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Number One Reason for Developing an Eating Disorder

Hundreds of people have asked me why someone develops an eating disorder. Of course many issues are involved, but from my exploration of this field over the years, I have concluded that there is one outstanding theme that runs through every person with an eating disorder whom I have encountered.

Early in their lives, people with eating disorders have experienced, on a sustained basis, relentless boundary invasion on every level.

When their physical, emotional, psychological, intellectual, sexual, and creative boundaries are consistently ignored and penetrated, people experience total boundary invasion. With no control and no way to end, protest, or, often, even acknowledge such invasions, these persons feel helplessness, despair, and a certainty that they are worthless to themselves or anyone else.

The consequences of such total invasion are vast. One consequence is an eating disorder. Having had so many boundaries disregarded, a person has no knowledge or skills in recognizing or honoring boundaries herself. She will eat or starve for emotional relief.

She may eat vast amounts of food for comfort value alone. She may deprive herself of food until her life is in danger. She has no internal regulator that tells her when she has reached her limit and experienced enough. Being oblivious to any boundaries means being oblivious to limits of any kind.

The compulsive overeater eats whenever and whatever she likes. She bases her choices on self-medication issues, not feelings of physical hunger.
The anorexic will not eat. There is no limit to her not eating. She will starve herself to death in search of relief from her emotional pain. She knows nothing of the experience of having enough. She couldn't say, "Enough," to an invader of her boundaries, and she can't say it to herself. The concept of enough has no meaning to her. She often feels that if she "disappeared," she might find some permanent relief.

I have heard countless anorexic young women talk ethereally, with a lost-in-a-beautiful-world-of-angels smile, of how wonderful it would be to become a vapor or a light dancing spirit in the clouds. Ah, such spiritual bliss, they imagine.

We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

Add a Comment204 Comments

Sysy92

I've had anorexia since I was 8, now weigh 84.8 lbs at 19 years old and 5'4'', and I have yet to find out the cause or "reason" for my E.D. though I would love to know. When I was in the hospital, they told my parents and I that it was "because I wanted to stay a little girl". And that was highly untrue in my mind. They also said that my parents are "making me feel like I have to stay a little girl". Which is also very untrue, my parents were and are great parents. I don't believe they had anything to do with it, and the doctors definitely made them feel guilty as well as myself. It's hard to believe how doctors will blame anyone and anything..especially when you've explained to them all your struggles and they totally eliminate everything you said, and then try to mentally feed you why they think you have it, and when you tell them they are wrong, they insist YOU are wrong.
The whole thing, is WRONG.

September 9, 2011 - 7:36am
EmpowHER Guest
Anonymous

I agree with the comments that the family should not be blamed. Our experience with out daughter was that she lost 20 pounds over a period of time and was at a healthy weight. But something biologically must have happened because it started to become an obsession and led to anorxia and then bulimia. We used the Maudsley method to refeed and fortunately she returned to a weight that medicine (fluoxetine-60mg which is effective amount for this disorder according to studies) would benefit her. It was a miracle. This was very biological. We wondered often if we were in any way the cause and she repeatedly told us and the counselor and the dietician that it was not the case. I think she had gotten an inbalance in her brain due to not enough fats, or hormones or something we may never know but it turned her obsessive about calories, exercise, and everything else associated with an eating disorder. Her personality was lost and the eating disorder controlled her. After medicine which went from 20mg to 60mg fairly quickly we saw the daughter we had really lost 2 years prior to that. Looking back there were signs that we would never have associated with an eating disorder but realize now they were just the beginning. I think saying that borders have something to do with so many eating disordered patients is harmful to the parents and also may keep them from seeing how very important the biological part of it is. I need to add though that it is very important they are not underweight when given the medicine as studies have shown it is not as effective in underweight patients.

December 3, 2010 - 11:07am
EmpowHER Guest
Anonymous

I agree with the comments that the family should not be blamed. Our experience with out daughter was that she lost 20 pounds over a period of time and was at a healthy weight. But something biologically must have happened because it started to become an obsession and led to anorxia and then bulimia. We used the Maudsley method to refeed and fortunately she returned to a weight that medicine (fluoxetine-60mg which is effective amount for this disorder according to studies) would benefit her. It was a miracle. This was very biological. We wondered often if we were in any way the cause and she repeatedly told us and the counselor and the dietician that it was not the case. I think she had gotten an inbalance in her brain due to not enough fats, or hormones or something we may never know but it turned her obsessive about calories, exercise, and everything else associated with an eating disorder. Her personality was lost and the eating disorder controlled her. After medicine which went from 20mg to 60mg fairly quickly we saw the daughter we had really lost 2 years prior to that. Looking back there were signs that we would never have associated with an eating disorder but realize now they were just the beginning. I think saying that borders have something to do with so many eating disordered patients is harmful to the parents and also may keep them from seeing how very important the biological part of it is. I need to add though that it is very important they are not underweight when given the medicine as studies have shown it is not as effective in underweight patients.

December 3, 2010 - 11:07am
EmpowHER Guest
Anonymous

Instead of arguing about WHY eating disorders happen ... what/who causes them ... isn't it better to focus on and educate oneself and others on HOW people can best recover from them?

Most of the experts agree that they really don't know what causes eating disorders, so what is the point of arguing?

"Boundaries" ???

So if one gets a 'fix' on how to set 'boundaries', that is going to be what SOLVES their eating disorder issues?
I think NOT. So what is the point of talking about 'boundaries'?
If well-meaning parents (particularly mothers) deprived their child at any early age in some way, so it's best that one separates themselves from their mother and other family members? And that's going to help - HOW?

I spent years blaming my mother for my eating disorder and other problems, until I finally figured out that my eating disorder and other issues had more to do about ME and how I was 'wired' than anything to do with what she did or did not do.
As far as her being 'controlling' in any way, nothing could have been further from the truth. My problems with my mother began when at an early age, I was so let down to find out that she did not meet my definition of 'perfect mom'.
Poor me. Now I realize that my mom had (and has) the right to be who she is. If who she is didn't match up to my expectations, too bad. She worked her butt off to do the best she could to give her kids a good life and never turned her back on us once when we went through difficult challenges. She was always there for us. Now that she is old, I realize how much she loved (and loves) me.

I am recovered now and have a daughter who has an eating disorder. Was I, in some way, the cause of that?
Sure. Genetics played a role and likely my 'less than perfection' at motherhood did, as well. Lucky for me, my daughter cuts me a lot more slack than I did my mom. And like my mom, I will never turn my back on my daughter. I will support her recovery in any way that I am capable of doing.

I read all the latest research, buy the latest books, listen to smart researchers and attend as many conferences as I can to learn as much as I can about what I can do to help myself, my daughter and others.

Here is an example of a conference that sounds interesting upcoming on Dec. 3 at in Corning, NY.
If I lived in or near NY, I would attend.

"Inside the Brain/Outside the Box"

"The goal is to better understand how starvation affects the brain and explore alternative therapies and how they maximize the brain's inherent potential to heal, said registered dietitian Carolyn Hodges Chaffee, the owner of the Elmira eating disorder treatment centers.

Robarge died in 2000 after a long struggle with an eating disorder. She was 13.

Dr. Richard Levine, the keynote speaker, will discuss the impact starvation has on the functioning of the brain. Levine, a nationally recognized expert, is a professor of pediatrics and psychiatry at the Pennsylvania State University College of Medicine.

Levine is also chief of the Division of Adolescent Medicine and Eating Disorders at Pennsylvania State Children's Hospital and the Milton S. Hershey Medical Center in Hershey, Pa.

Jeannetta Burpee, an occupational therapist at St. Joseph's Hospital in Elmira, will discuss the role sensory integration -- the neurological process that organizes sensations from one's own body and the environment -- plays in the treatment of eating disorders.

Psychotherapist Andrew Seubert of Corning will highlight recent findings about the functioning of various areas of the brain in eating disorder patients. He will also discuss nutritional and non-pharmacological interventions that can restore brain balance and health.

Clare Brown, program director of the Sol Stone Center, will discuss and demonstrate the use of art therapy, yoga, meditation and other alternative therapies in the treatment of eating disorders.

A panel of patients who have used alternative therapies will talk about their experiences to conclude the seminar, according to a news release.

The seminar begins at 8 a.m. Dec. 3 with registration and concludes at 4 p.m. Registration is $75 before Nov. 26 and $100 after Nov. 26. Family and group rates are available upon request."

http://www.stargazette.com/article/20101018/NEWS01/10180340/1113/Seminar...

October 18, 2010 - 9:27pm
Cary Cook BSN RN (reply to Anonymous)

Thank you so much for sharing this information. Part of the problem, in my opinion, is that eating disorders are as varied as the people who have them. Each sufferer is different, each of the families is different, and that means while dynamics may have commonalities from person to person the cause and solution is specific to the person. There have to be many modes of treatment, because there are many differences among people with eating disorders.

It is wise of you to keep up on all the new information. You never know what kernel you grab from something is going to be just the thing that clicks for you and your daughter. I wish you both the best. Thank you so much for writing.

October 19, 2010 - 6:24am
EmpowHER Guest
Anonymous

See Dan Siegel's wonderful talk on the developing mind and how issues of early attunement and connection affect a child's development and ability to cope in their adult life.

http://fora.tv/2009/06/30/Dan_Siegel_The_Brain_and_the_Developing_Mind

October 18, 2010 - 5:22pm
EmpowHER Guest
Anonymous

Cary Cook,
I am healing and I can thank many people for that - including good therapists, wonderful doc/psychiatrist, nurses, RD, my parents' dedication - and God.

I am sending you healing vibes, too, with hope that your challenges with RA become less.

Regards!

October 15, 2010 - 6:28pm
anne57

Back one last time with evidenced-based research to support family-based therapy as the intervention of choice in most instances. As MOST eating disorders start in adolescence or the teen years, this information is critical to get into the hands of families. It is also critical that families ask for it as only then will clinicians begin to offer it on a more widespread basis.
--ANNE--
The Wall Street Journal
OCTOBER 5, 2010

Parental Role Aids Anorexia Recovery
By SHIRLEY S. WANG

Anorexia patients' families, once considered partly to blame for adolescents succumbing to the dangerous eating disorder, are increasingly being incorporated into the solution.

In the strongest evidence to date to suggest families should be involved in treatment, a 121-patient study published Monday found that a therapy in which parents remain present at each meal until an anorexic child eats appears to be more effective in fostering recovery than when a child works solely with a therapist.

The so-called Maudsley model—developed at Maudsley Hospital in London more than 20 years ago—calls for parents to take charge of feeding a severely underweight child, "making it impossible not to eat," said Daniel Le Grange, one of the study's authors and director of the Eating Disorders Program at the University of Chicago.

Patients with anorexia nervosa, a sometimes deadly disorder, often refuse to eat because of a fear of gaining weight and develop abnormally low body weight as a result. The condition was once thought to be related to a patient's desire for independence and it was believed that treatment required separation from parents.

Even now, a popular criticism of the Maudsley method is that it "runs roughshod" over adolescents' need to develop independence, according to Dr. Le Grange.

While anorexia tends to develop in teenage girls, the illness can also affect males and people of other ages.

The study, conducted by researchers at the University of Chicago and Stanford University, showed that one year after treatment ended, patients who received family therapy were more likely to reach and stay in recovery compared with those treated one-on-one by a therapist.

The difference in effectiveness became more pronounced over time. At the end of the year-long treatment regimen, about 42% of patients in the family-therapy group were considered in remission—that is, within 5% of their healthy body weight—compared with 23% of those in the individual-therapy group, though the difference wasn't deemed statistically significant. But 12 months later, nearly half those in the family-treatment group were in full remission, which was significantly better than the 23% in the professional-therapist group.

The study appeared in the Archives of General Psychiatry.

"This is additional evidence that involvement of the family can be a very effective way in helping kids overcome their problems," said B. Timothy Walsh, an eating-disorder researcher and professor of psychiatry at the New York State Psychiatric Institute, Columbia University Medical Center, who wasn't involved with the study.

When Rina Ranalli began using the Maudsley approach for her then-13-year-old daughter in September 2008, she was skeptical. But Ms. Ranalli and her husband tag-teamed to sit with her through three meals and three snacks daily. For the first two months "it was hell," said Ms. Ranalli, who said she told her daughter over and over, "This is your food, this is your medicine, this is what you're eating, no question."

By November, her daughter was gaining weight consistently, the meals weren't as prolonged and Ms. Ranalli started "seeing sparks" of her daughter's personality again. The girl was able to reach her target weight by January.

"It's just a very difficult thing to endure emotionally," said Ms. Ranalli, a stay-at-home mother in Chicago, but "when you can actually be part of the solution, it empowers you."

Write to Shirley S. Wang at shirley.wang@wsj.com

October 15, 2010 - 5:43pm
EmpowHER Guest
Anonymous (reply to anne57)

Thank you for posting this article about the new research, Anne57.

I just returned from the NEDA Conference in NY, and this exciting research was the talk of the place ... as was the other latest research that completely refutes old-fashioned and harmful notions about 'boundaries' and the like held by old-school therapists like Johanna. Most of the sessions/workshop presenters at NEDA were very 21st century with today's knowledge of causation and appropriate treatments. I did sit in on one where the therapist showed us photos of babies and told us that anorexia and other eating disorders begin in infancy - with poor bonding with mothers.

It's pathetic, really - and quite harmful.

I spent time in treatment facilities where therapists tried to tell me that my parents were responsible/to blame for my getting anorexia.
It did me no good but a great deal of harm.

The good news is that parents AND sufferers are getting a lot of good information today which help them understand the need to stay away from people like Johanna and to go to treatment providers who really 'get it' for help.

Hopefully, we can put a stop to the blaming of parents and other family members for causing eating disorders. This is false.

I love you mom and dad!

October 15, 2010 - 6:13pm
Cary Cook BSN RN (reply to Anonymous)

Thank you so much for sharing your experience. I hope this means you are healing.

October 15, 2010 - 6:21pm
Cary Cook BSN RN (reply to anne57)

Thank you for posting this article, Anne. It was my experience working on an eating disorder unit that family therapy was crucial to healing. Eating disorders are so difficult to treat. We need evidence based information, not old fashioned ideas with no basis in fact.

Thanks again.

October 15, 2010 - 6:10pm
EmpowHER Guest
Anonymous

Shelley,

You are welcome. I am glad to share the video.
I wish you continued good health, peace and happiness.
You are doing an amazing job of self-care.
Blessings!

September 6, 2010 - 5:56pm
EmpowHER Guest
Anonymous

Shelley,

Eating disorders are NOT addictions ... the recent research/evidence supports that they are BRAIN disorders.
The notion that 'dysfunctional families or parents' cause people to develop eating disorders is nonsense and frankly, 'old school'.
If you had a dysfunctional family or poor parenting, the %'s are the same as with non-eating disorder sufferers.

I am glad that your eating disorder is in remission and I hope today that you have a good relationship with yourself, your body and your family.

I came across this short but powerful video featuring Dr. Craig Johnson of Laureate.

He speaks on the high recovery rate of people with anorexia (70-80%)
and tells us that in treating very difficult patients, "our best years are ahead of us".

He tells us that the answers for successfully treating very difficult patients and being able to shorten their recovery time will likely come not from psychotherapeutic research but from bio-genetic research, as anorexia is a disorder of the brain and genetics

Worth your three minutes:
http://www.bulimia.com/client/client_pages/johnsonvid.cfm

September 6, 2010 - 2:10pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Dear Anon,
To state that EDs are a “brain disorder“, and thus, by apparent extension, proceed forward to the additional assertion that experience and environmental factors ( such as parenting, as a pertinent example) can play no role in the disorder’s development, may be an example of drawing unwarranted conclusions. I suspect that any " new school" psychologist or neuroscientist worth his salt would support, with little hesitation, the statement that experience and environmental factors can and do produce significant physical changes in brain structure. Changes in structure that may tip the scale, in combination with other admitted factors such as genetics, and result in expressed psychological conditions that could also be properly labeled as “brain disorders.”

For example, it’s been conclusively demonstrated that psychological trauma and abuse correlate with quite substantial and measurable structural changes in the hippocampus and amigdala , changes that are (admittedly, also by extension) thought by many to underlie the pathological symptoms of PTSD, a condition that as most would agree, might also be labeled a “brain disorder.”

And while it's confoundingly true that EDs often show up in the families of good parents, EDs remain mysterious, and to then proceed to the conclusion that parenting, no matter what it's form, could have no possible effect on the development of EDs remains akin to the argument that since many trauma victims do not go on to have PTSD, experienced trauma can play no possible role in the development of those who do, and that's it's existence in a victim's background is a mere and unrelated artifact of coincidence.

To close, I suspect that most neuroscientists would agree that simply labeling a current condition a “brain disorder” does not, by extension, preclude the very real influence of environmental factors on the disorder’s development. And that the drawing of such conclusions, no matter what comfort they may provide to honestly and authentically good and caring parents ( or to others who, in truth, may not be that good ) is by all current scientific accounts and standards, unwarranted.

September 6, 2010 - 10:34pm
Cary Cook BSN RN (reply to Anonymous)

Well said, Anonymous. Thank you for your well-reasoned comments.

September 7, 2010 - 6:10am
pixie (reply to Anonymous)

Interesting video... I'm so glad they're learning more and more how to treat eating disorders!

For me, personally, my eating disorder is the exact same as my alcoholism, which is considered an addiction (even though alcoholism also is a brain disorder). The behavior patterns are identical for me. Bulimia (purging) releases chemicals in the brain similar to a drug, hence my personal opinion that it's an "addiction" for me. The exact same stressors that cause me to drink, can also cause me to purge instead. (Maye that's a study someone should do.)

I cross-over my recovery methods, use the AA 12-steps for my eating disorder, and I use visulization/relaxation and psychotherapy drugs under a doctor's care for my alcoholism recovery. It's what works for me! :)

Life for me is all about balance and normalcy. No, every day is not perfect, we all have "stuff" to deal with on a daily basis. That's what living life is. I'm in a really good place right now, today. I'll face tomorrow when it comes. I've learned to live in the present moment. The desire to purge is still there sometimes, just like my desire to drink. The key is, I have the tools that I use when those desires creep into my head.

Thanks for sharing the video!
Shelley

September 6, 2010 - 3:15pm
pixie

I haven't posted to this board in a while, mainly due to the ugliness and close-mindedness of the comments made towards Joanna Popink. Her article fits me, personally, to a T. I'm 47 years old, at age 44 developed full-blown, out-of-control bulimia. I should have died during that time. I'm what's referred to as a "restrictive bulimic", can starve myself for days, eat and immediately purge whatever I've eaten.

Thankfully, with the knowledge I've gained from many many sources (including Joanna), I've managed to regain my control and am now in remission. This disease is no different than any other "addiction". I've been under the care of my doctor, long-time therapist (5+ years now) and a nutritionist who specifically treats eating disorders. My counselor and my nutritionist are recovering anorexics.

Thank you, Joanna, for your article!!! :)

Warmest regards to all,
Shelley

September 6, 2010 - 1:30pm
EmpowHER Guest
Anonymous

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January 2, 2010 - 11:21am
EmpowHER Guest
Anonymous

This woman and some of the other so called 'professionals' who are praising what she said are really scary! Go back to school, do your homework, keep up with the times/research - people. You can do a lot of harm. Parents do not cause eating disorders. Period. Sheez.

November 16, 2009 - 5:54pm
EmpowHER Guest
Anonymous

"But, the problem with attributing an eating disorder to a biologically based predisposition toward it is that testing is done AFTER the ED sufferer has developed the ED."

Exactly. PLUS, who's to say that some of the brain malfunction might not be caused in part by chronic malnutrition? It's like asking whether the chicken or the egg came first. We don't know if the ED behaviors are a CAUSE or a result of these brain malfunctions. Malnutrition is known to wreak havoc on the brain and body.

November 2, 2009 - 8:32pm
EmpowHER Guest
Anonymous

Ronin,

I suffered from anorexia and never experienced ANY emotional, sexual or other abuse from my parents or anybody else.

My parents were/are loving and wonderful people.

Keep your day job!

November 2, 2009 - 8:35am
Ronin

I don't doubt that there is evidence that those suffering from an ED have some type of malfunctioning brain circuitry. But, the problem with attributing an eating disorder to a biologically based predisposition toward it is that testing is done AFTER the ED sufferer has developed the ED. I suspect that it is far more likely that the relentless environmental stress these women have been subjected to caused the brain to malfunction. I've read articles that demonstrate that, following successful therapy, brain scans of individuals who had recovered from a mental illness no longer suffered from any brain abnormality.

The "biologically based predisposition" argument can leave sufferers of any mental illness believing that they are genetically flawed and that full recovery is not possible. And, again, I don't buy that argument. It also possible that attributing an ED to genetics could discourage ED sufferers from confronting the emotionally based hostility/fear at that the root of the ED. Worse, parents that have failed their son or daughter, can cite the predisposition argument to absolve themselves of blame and, tragically, continue mistreating their child. I suspect that one reason that individuals find it so difficult to overcome an ED is that those who caused or contributed to the development of these EDs refuse to amend their behavior toward the ED sufferer. Indeed, the unfortunate behaviors that accompany an ED may very well cause bad parents to treat the ED sufferer worse. How difficult must it be for a person suffering from an emotional illness to recover, despite therapy, if those that made the individual sick fail or refuse to amend their ways? Now, the person suffering from a emotional illness is subjected to the same unhealthy environment while having to grapple with the "shame" of being labeled with a disorder.

While my friend who suffers from anorexia can be difficult to reach, it is not her fault. How could it be different? How difficult must it be for someone who has been so relentlessly emotionally abused to trust anyone? To not fear exposure of her most inner most pain and subsequent rejection and abandonment when the people who should have cared for her repeatedly let her down? And how much more difficult becomes the task of establishing a foundation of trust with her if well-meaning, but misguided, experts tell her that she's just a genetically flawed individual? My friend is not genetically flawed -- she's in pain, encased in a protective shell, and, I believe, hoping someone she can truly trust will come along to help extricate her from her pain.

November 2, 2009 - 8:28am
EmpowHER Guest
Anonymous (reply to Ronin)

For goodness sake many physically illnesses have some genetic predisposition. We don't talk in terms of the individuals being gentically flawed and give up on them. Hopefully they will receive evidence based treatment for whatever their illness and taught how to look after themselves to keep themselves healthy. They are made to feel "ashamed" by a society that isn't presented with current research. Many many parents ( yes I agree not all) who love their children have been made to feel guilty and "ashamed" of so called creating a child with an eating disorder. That is a disgrace.

Your friend is not "genetically flawed" because she has an eating disorder, neither is my son who has a kidney disorder, nor are the children I work with who have inherited dyslexia or language disorders. But yes they have inherited the genes that predispose them to these difficulties. It does not make them any less a loved, valued member of the community and their families. Please do not suggest that having a genetic predisposition makes you somehow a flawed individual. Knowing one has a gentic predisposition to any disorder or illness is valuable information whether it's breast cancer, heart failure or a learning disability. I wish your friend the very best. I hope like my two young adult children she will recover from her illness and learn how to maintain her mental and physical healthy from then on.

PS There is an increasing amount of research identifying those "at risk" PRIOR to the onset of an eating disorder and encouraging early intervention.

January 3, 2010 - 4:55am
EmpowHER Guest
Anonymous

Take good care of your precious self, Anony.

November 1, 2009 - 11:32am
EmpowHER Guest
Anonymous

Okay, thanks for your post Anon. I don't quite agree with you but I believe you're a sincere person.

November 1, 2009 - 11:27am
EmpowHER Guest
Anonymous

Oh, just to clarify, I have dx of EDNOS, depression, and anxiety. Even though I talked about PTSD in my post I don't actually have PTSD.

November 1, 2009 - 11:24am
EmpowHER Guest
Anonymous

Anony,

A lot of people have a terrible childhood but they do not suffer from ED.

Sorry ... I believe that blaming a bad childhood or parents for an ED disorder is just misguided.

Why don't you take your psychiatrist's advice and go to a therapist that she recommends?

Best of luck to you!

I don't know if you suffer from BN OR AN, but I can tell you from personal experience - you CAN recover completely from an eating disorder.

May you find recovery and peace!

November 1, 2009 - 11:16am
EmpowHER Guest
Anonymous

Good post miscortes.

November 1, 2009 - 11:14am
EmpowHER Guest
Anonymous

Actually, no I've never been in therapy even though I obviously need it (not everyone can afford expenive therapy or fancy treatment centers). I just see a psychiatrist and she tends to push the biological theories, although she did refer me to some therapists. I believe in the BIOPSYCHOSOCIAL model of mental illness, not a strictly bio-bio-bio approach or a strictly psychosocial model. Don't assume I'm a brainwashed tool. Please, I'm not that stupid. I am capable of thinking critically and doing research and I don't discriminate when it comes to criticizing people. And you have NO idea what my childhood was like.

November 1, 2009 - 11:09am
EmpowHER Guest
Anonymous

To the person who posted above this, you sound like you have anger issues.

Perhaps you have spent too much time in therapy/treatment with the misguided people.

Time to rethink your future recovery approach?

I am a recovered restrictive anorexic who does not blame my parents in any way for my issues with arorexic and depression.

I came to that conclusion on my own.

Best of recovery success to you!

November 1, 2009 - 10:02am
misvives HERWriter Guide

I must agree that any scientific information can be construed the way the reader wants the information to be interpreted. Statistics right? Mathematics that you can draw your own conclusions to.

I have never had an ED although several very close friends of mine have. Two things that anonymous wrote are spitting images of what my two friends contributed their EDs to which was abuse and Post Traumatic Stress Disorder (PTSD). Both friends of mine had horrible and traumatic upbringings that you would think were only in the theater. Both friends were drugs addicts later in life and had EDs although one has changed her life for the better at the ripe age of 36. I commend her.

I believe that anonymous has a strong point here and people from the outside (like myself) should consider all the issues surrounding the person dealing with this disease.

November 1, 2009 - 9:59am
EmpowHER Guest
Anonymous

It's interesting how most of the commenters are PARENTS and not ED sufferers themselves. I wouldn't necessarily say I had "boundary" violations, whatever the F that means. "Boundary violations" sounds like some New Age liberal white hippie term. That being said, I did have some abuse issues going on. I find it VERY telling that the parents of children with EDs are screaming so loudly and shrilly here. Why not allow some ED sufferers to have a voice? I wonder why it's the PARENTS who are being so publicly loud and histrionic while the ED patients are messaging this author privately to have discussions. Do you people have attention or ego issues?

I think eating disorders are caused by a combination of biology and environment. I FIRMLY believe that genetics is ONE important factor, but NOT the ONLY factor in eating disoders. I think some people are genetically more vulnerable to being more anxious, depressed or obsessive and that stress (which does not necessarily have to be rooted in bad parenting, btw) can trigger an ED or some other mental illness. And to the snotty parents who dismiss the psychosocial factors and talk about how "science" proves that EDs are biologically based illness, I would like to say, ever heard of EPIGENETICS. There is so much SCIENTIFIC research showing that LIFE EXPERIENCES can leave PHYSICAL imprints on the brain. Ever heard of PTSD? The brains of PTSD patients look very different from the brains of "normal" controls. There are so many other scientific studies out there.

It's funny how you lambast this author for being a crackpot who ignores science yet some of you seem to conveniently ignore the science yourselves or you interpret scientific journal articles to your own liking.

November 1, 2009 - 9:34am
EmpowHER Guest
Anonymous

Is this still going?

October 31, 2009 - 5:43pm
pbutts

Ronin-

I'm sure you do your homework when it comes to representing your clients; I encourage you to do the same when it comes to this very serious disease. The research on the biological basis for eating disorders is very clear. One place to start would be this literature review from Massachusetts General Hospital : http://www2.massgeneral.org/harriscenter/about_an.asp

Several other good links appear in the comments on this article. Criticism of Ms. Poppink's thesis is in no way intended to invalidate the experience of her patients or others who have commented on this post, but treatment must be evidence-based which her article is not.

October 31, 2009 - 3:53pm
Joanna Poppink

Dear Ronin,

Thank you for presenting your perspective and your experience. I am glad you wrote and appreciate your response very much.

Since this article came out on Empoweher it has evoked a stormy public reaction from parents. I am concerned for the people suffering from eating disorders who feel overwhelmed by this parental outcry. Women with eating disorders have written to me privately for support. I have also received private posts from people voicing their agreement with what you say.

Your post is clear and public. To me that means that people with an eating disorder in their history can find what you've written and be reassured that if indeed they experienced boundary violations, they can be heard, believed and understood.

Thank you again.

best regards,

Joanna

October 31, 2009 - 2:43pm
Ronin

I have a friend with anorexia and her boundaries as a child/teen/adult have been repeatedly and aggressively violated by her parents, her father in particular. As a criminal defense lawyer with 20 years of experience, I have represented hundreds of clients with mental health issues. In each and every case, the parents failed their son/daughter. And every young woman I've represented with a mental health problem had an unhealthy relationship with her father. I, therefore, have difficult time believing that anorexia is a biologically based disease. Many parents that fail their children would like to blame a psychiatric condition on genetics or some other such nonsense. It I suspect that the negative reactions from the parents responding to this article are based mostly on denial.

October 31, 2009 - 2:22pm
Ginna

Eating disorders can be many things but they are always extreme. It is thought that most eating disorders surface during adolescence but more recent data has indicated that it could be much earlier or later. One important fact About Eating Disorders is that almost all cases are females with males accounting for well under 10%. Similar to addiction, eating disorders are also a disease but they are treatable. They are caused from very complicated psychological and biological underlying causes. For more related information visit the link below,
http://www.cliffsidemalibu.com/eating-disorders/about-eating-disorders/
May be it is useful for the readers.

October 22, 2009 - 11:03pm
EmpowHER Guest
Anonymous

Considering Ms. Poppink's article and the debate it has generated, this is a timely and dispassionate article:
http://www.time.com/time/health/article/0,8599,1904999,00.html?xid=rss-t...
I hope everyone reading and posting here will take time to read it.
Very best wishes,
Zeri

June 19, 2009 - 8:52pm
KristineM

Here is a link to a Time magazine article that came out today called "A Genetic Link Between Anorexia and Autism" http://www.time.com/time/health/article/0,8599,1904999,00.html?xid=rss-t...
quotes:
""[Anorexia is] highly heritable, it runs in families, and it's clear now that it's affected by a cluster of [early life] vulnerabilities like anxiety and perfectionism. If you don't have those vulnerabilities, you are very unlikely to develop anorexia," says Dr. Walter Kaye, director of the eating-disorders program at the University of California, San Diego.'

"Essentially, Treasure and her colleagues have abandoned the idea that family dysfunction causes eating disorders and instead enlist the family to help guide patients' recovery. Most recently, the Maudsley method has also incorporated a new type of cognitive behavioral therapy, based on the autism connection, which aims to broaden the narrow thinking routines of people with anorexia. "

"Treasure's colleagues at the Maudsley Hospital say current treatments are equally obsolete. In the late 1980s, the British researchers published the earliest studies describing what has become known as the Maudsley method of treating anorexia in teens — and it remains the only therapy that has proved effective in controlled trials. Unlike traditional treatment, which assumes that anorexia is caused by environmental factors and low self-esteem and often involves intense therapy at residential treatment centers, the outpatient Maudsley method does not focus on psychological therapies or on "parent-ectomy" — removing the teen from the home."

My D had anorexia and has a different ED now. My sister's S has autism. As far as we know, no one in our family before us or contemporary with us has had an ED or autism. Don't know where these disorders came from, but one thing is very clear -- we have both done everything in our power to love, support and help our kids, and we have never in any way been either neglectful nor have we inflicted pervasive boundary penetration on our children.

June 19, 2009 - 12:35pm
EmpowHER Guest
Anonymous

Sorry, I didn't mean to repeat post the above. Not sure how to undo it now.

June 19, 2009 - 12:26pm
EmpowHER Guest
Anonymous

OMG, say it's not so!

Joanna has a book coming out.

From her Twitter blog:

"Tweaking my book contract with publisher. Yes, my eating disorder recovery book sold and will come out in 2011. Hooray!"
...

Heaven help us!

Well, she has garnered some publicity for her book, for sure, but I am not sure that it is really the type of publicity that a professional would want.

June 18, 2009 - 11:42am
EmpowHER Guest
Anonymous

Anne, great info! Thank you for posting that.

June 18, 2009 - 10:12am
EmpowHER Guest
Anonymous

Here are two pertinent quotes off the Mayo web site concern their Maudsley treatment approach:

"Children who have eating disorders are typically from loving families. They are very responsible, accomplished, and well-behaved. That's what makes their eating disorders so baffling to the people who love them," says Leslie Sim, Ph.D., clinical director of Mayo's Child and Adolescent Eating Disorders Program. "We don't know what causes eating disorders, but we do know that parents play a huge role in helping their children recover."

and

"For those who commit to family-based therapy, the treatment success rate is excellent. Nearly 96 percent of patients treated with FBT at Mayo since 2004 (about 50) have successfully recovered. Less than 5 percent have needed to re-enter treatment programs. This compares to a long-term recovery rate of about 50 percent for patients in standard treatment programs, which commonly include multiple hospitalizations and long-term treatment. The FBT program often eliminates the need for follow-up programs and helps patients adjust more quickly to their outpatient program."

I commend Mayo for offering parents this treatment option. I hope others follow suit.

anne

June 18, 2009 - 9:57am
EmpowHER Guest
Anonymous

For those of you who continue to suffer from ED, you need NOT be subjected to therapists who feed into your 'victim' mentality.

Erin Gates, a recovered anorexia sufferer, talks openly and candidly about her journey through ED and to recovery and a successful life.

http://www.huffingtonpost.com/erin-gates/my-time-inside-a-celeb-re_b_831...

This, too, can be you.

Do not waste your time trying to find 'cause' and placing 'blame'.

Getting the right help early on seems to be the key to successful recovery and a fulfilling life free from ED.

June 18, 2009 - 8:29am
EmpowHER Guest
Anonymous

While I know nothing about the program other than it exists, Mayo Clinic uses Maudsley and reports a very high success rate.

http://www.mayoclinic.org/eating-disorders/familytherapy.html

Also, I totally interpreted the comment to Shelley about daughters differently than you all apparently did. I did not interpret any hint regarding her being an abusive mother, period. I took from the question that the writer was asking because of the genetic risk of passing on traits that predispose towards these illnesses. That, certainly, no one is in control of or blamed for. When I read it, I felt the writer was simply trying to make a point about genetics, not accuse anyone.

anne

June 18, 2009 - 4:44am
EmpowHER Guest
Anonymous

Carol-THANK YOU! You summed up what i wanted to say so succinctly that I'm not going to bother responding. You're right and thank you for standing up for many voiceless people.

Shelley-I've been enjoying your contributions to the discussion. For the record, I think you sound like a wonderful mother (definitely NOT abusive) and if you had had daughters, I believe that you would have raised them well and been able to keep them out of the whole ED mess.

I'm disgusted by whoever it was who said that an eating disordered mother is "abusive" by virtue of having an ED. Shame on you. An eating disorder does not make an abusive person, rather eating disorders are likely to be responses to abuse. People do what they have to in order to survive abuse and sadly that can include an eating disorder. A person with an eating disorder is more than likely a survivor, NOT an abuser. An abuser is someone who would throw around such inflammatory and false comments about mothers with eating disorders. I have known mothers who suffer from eating disorders and they are wonderful, caring parents who would do anything to prevent their sons/daughters from falling into EDs and have been successful. These parents are not only more likely to notice early signs of depression/EDs/mental distress in their children but also more likely to believe their kids and take quick action. Their kids feel that they're able to confide in their parents and find acceptance and understanding. All of these mothers I have known have been actively seeking healing and how inspiring is that for a child to witness. A child eventually has to accept the humanity of their parents-to be able to see them as flawed, see them cry/feel scared or vulnerable/struggle with problems-and come to terms with it and see them as people as well as Mom or Dad. Similarly, parents must come to terms with and accept the humanity and personhood of their kids. A parent who struggles with an ED or mental illness shouldn't lie about it or go to great lengths to deny it despite evidence to the contrary because the kid knows something is wrong and its better for them to know the truth. Watching this parent struggle and move forward is probably one of the best lessons they could ever learn and if it keeps them from falling into that path or prompts them to come forward and ask for help if they became depressed themselves then all the better.

-Jera

http://www.fatanorexicreflections.blogspot.com

June 17, 2009 - 11:33pm
EmpowHER Guest
Anonymous

Mayo Clinic

Causes of Anorexia

http://www.mayoclinic.com/health/anorexia/DS00606/DSECTION=causes

It's not known specifically what causes some people to develop anorexia. As with many diseases, it's likely a combination of biological, psychological and sociocultural factors.

Biological.

Some people may be genetically vulnerable to developing anorexia. Young women with a biological sister or mother with an eating disorder are at higher risk, for example, suggesting a possible genetic link. Studies of twins also support that idea. However, it's not clear specifically how genetics may play a role. It may be that some people have a genetic tendency toward perfectionism, sensitivity and perseverance, all traits associated with anorexia. There's also some evidence that serotonin — one of the brain chemicals involved in depression — may play a role in anorexia.

Psychological.

People with anorexia may have psychological and emotional characteristics that contribute to anorexia. They may have low self-worth, for instance. They may have obsessive-compulsive personality traits that make it easier to stick to strict diets and forgo food despite being hungry. They may have an extreme drive for perfectionism, which means they may never think they're thin enough.

Sociocultural.

Modern Western culture often cultivates and reinforces a desire for thinness. The media are splashed with images of waif-like models and actors. Success and worth are often equated with being thin. Peer pressure may fuel the desire to be thin, particularly among young girls. However, anorexia and other eating disorders existed centuries ago, suggesting that sociocultural values aren't solely responsible.

.......

For those of you who are interested in causes of eating disorders, it is best to check with EXPERTS on the subject.

June 17, 2009 - 9:51pm
EmpowHER Guest
Anonymous

Here's a research article well worth reading:

Family therapy in the treatment of adolescent anorexia nervosa: current research evidence and its therapeutic implications. June 2008
Cook-Darzens S, Doyen C, Mouren MC.

Department of Child and Adolescent Psychiatry, Hôpital Robert Debré, Paris, France. solange.cook@free.fr

From the outset, the systemic and family movement has expressed an interest in eating disorders, more specifically anorexia nervosa, establishing causal links between family functioning and aetiology and advocating family therapy as the treatment of choice for this disorder. Because of high consistency between its explanatory and therapeutic dimensions, this model continues to dominate our conceptualizations and clinical practice, IN SPITE OF A LACK OF EMPIRICAL EVIDENCE. This article summarizes present empirical evidence concerning both family functioning (explanatory dimension) and the effectiveness of family therapy (therapeutic dimension) in anorexia nervosa, and describes resulting changes in theoretical and clinical perspectives. A model of evidence-based family therapy is presented and several unresolved issues are raised. Overall, this overview of the literature supports the use of therapeutic models that are more flexible and normative, less guilt-inducing, more diversified (eclectic and integrative), and more rooted in the empirical literature.

PMID: 19169071 [PubMed - in process]

Caps are mine because I can't underscore or italize

anne

June 17, 2009 - 8:34pm
EmpowHER Guest
Anonymous

"I'm not sure if it ever occurred to you, calling someone else a bully is, in fact, bullying behavior.
It is possible to disagree with another person's point of view without disparaging them. "

How is it bullying behavior if you're calling out someone for bullying? Not all of the parents on here were rude but I can think of two individuals who made offensive comments on here. Granted one of them did apologize.

So if someone is offended by another individual are they not allowed to speak up?

ja

June 17, 2009 - 10:40am
KristineM

Jera, I am very sorry that you suffered so much, both from boundary violations and from an ED. I hope you got the treatment you needed and that you are now physically and mentally/emotionally healthy. No one should have to go through what you did.

Most families of children who manifest EDs are, however, loving and supportive of their children. They are close enough to their children to prevent boundary violations by others, or to treat the ill effects if that should happen temporarily to their child. Most families will do whatever they can to bring a child to health from any illness, physical or mental. Certainly there are abusive parents who do nothing but harm to their children, but that is just not the case in the vast majority of families. EDs can and do manifest in both kinds of families. The healthy families can literally save their children's lives. It is very sad that you had to save yourself, but a good thing that you were able to do so. Many other children have died as a result of either getting no treatment for an ED or not receiving successful treatment.

Whatever the causes are of EDs, the word needs to be spread that there are very successful treatments out there, that don't take many years and hundreds of thousands of dollars. These treatments can be done outpatient in much less time, with the help of devoted families in addition to the mental and physical health care professionals. I would have given much for the following link back in 1999 when my D was starving in front of my very eyes. http://www.maudsleyparents.org/whatismaudsley.html

June 17, 2009 - 9:25am
EmpowHER Guest
Anonymous

Please, empowher management!

Speak to real experts such as those at Rogers Hospitals, Walden/MA, Remuda Ranch, UCLA, and other professionals for their opinions on what this woman has to say about ED causes.

Do NOT hold this woman up as an "expert" on eating disorders. To do so does a great disservice to the public at large.

June 17, 2009 - 6:44am
Joanna Poppink

Dear Jera,

Thank you for this most moving and articulate post. You think deeply and obviously have done a great deal of successful internal work.

Thank you for your patience in reading through this discussion and speaking so thoroughly and gracefully on many of the issues raised. I appreciate hearing from you.

Joanna

June 16, 2009 - 10:59pm
EmpowHER Guest
Anonymous

Dear Joanna,

Thank you for your article. It's very difficult to read articles/books where they discuss the whole boundary issue. A lot of people are afraid to touch that because they don't want to be accused of '"blaming families", or, god forbid, suggesting that eating disorders are about more than just food and weight. I know that in my case, boundary violations were what started and kept my anorexia going for many many years. It wasn't a "biochemical imbalance", heredity (no one in my family suffers from EDs, depression, or anything like that. just me), or a "diet gone wrong". I had no control over my life, no defense against the boundary violations, and no one to stand up for me and my ED literally saved my life. It was the only thing that helped me get through those things and survive. Forcing me into some family therapy or "Maudsley approach" would have led me to suicide or simply exacerbated the boundary violations that were already happening. Certainly those approaches can be effective, but not in all cases.
I'm sorry that so many people are misunderstanding what you are trying to say and attacking you. I found it to be very articulate and compelling. As for those who were accusing you of being self promoting or not supporting people trying to recover (e.g. that ridiculous accusation that you were a therapist who sought money through keeping someone ill and therefore in treatment for a long time), I'm sorry that they're so narrow minded and I feel sorrier for any ED sufferer who has to deal with them.

As for that horrible comment someone made about ED sufferers and how their thinking is "twisted" and that they're "manipulative" and therefore lying if they allege abuse, that smacks of misogynistic victim blaming. I am an abuse survivor. Many of those same things are said about abused women who are trying to press charges against their batterer or keep her children safe from him. People often justify trying to take over an abused woman's life because-by virtue of her having been abused-they think she is stupid, not thinking clearly (even when the decisions she makes, if taken within the context of the environment she is trying to survive in and the obstacles she is up against, are very logical and sensible courses of action) and that because she "let him do that" she is therefore untrustworthy, weak, and prone to hysteria or lying.

Thank you Joanna. I shall be saving this post, thank you for it.

-Jera
http://www.fatanorexicreflections.blogspot.com

June 16, 2009 - 10:27pm
EmpowHER Guest
Anonymous

From Joanna's Twitter page ...

"Just became eating disorder expert and will do Q & A for empowher.com."

Now that is a scary idea.

June 15, 2009 - 4:24am
EmpowHER Guest
Anonymous

Peter, I agree that the article should be withdrawn - by Ms. Poppink or the editors of Empowerhr.

Very well thought out post, by the way.

... Suze

June 14, 2009 - 10:10pm
pbutts

I have struggled with my decision to contribute to this debate. I have questioned my motives and worked to clarify my purpose for writing and my intended audience. What I have realized is that these are all things that you, Ms. Poppink, failed to do before you submitted this article. I have read a number of your various posts and blog entries across the Internet and find most of them to be well written and positive contributions to the Internet community. However, this article and particularly this article on this site which claims to be "a unique online resource dedicated to helping women improve their health and well-being. We provide up-to-date medical information, access to leading medical experts...." is extremely dangerous.

I'm unclear as to who your audience is--is it ED patients themselves? is it treatment professionals? is it friends and caregivers...the "hundreds of people (who) have asked (you) why someone develops an eating disorder"? Are you posing a new theory asking for dialog and feedback? What you fail to make clear to your readers is that this is a new theory, without any research base. That's fine if you are honest about it, but your writing is so over-the-top with broad, sweeping generalizations and black and white thinking that it couldn't help but polarize readers. The headline is not "One Reason for Developing an Eating Disorder" it's "NUMBER ONE Reason for Developing an Eating Disorder."

You write "from my exploration of this field over the years, I have concluded that there is one outstanding theme that runs through every person with an eating disorder whom I have encountered. Early in their lives, people with eating disorders have experienced, on a sustained basis, relentless boundary invasion on every level." Your word choice leaves no room for discussion; "one outstanding theme," "every person," "sustained basis," "relentless boundary invasion," "every level" are all extremely aggressive, all-or-nothing phrases that don't belong in a serious scientific discussion. If they had been supported with evidence from the literature and research, the hyperbole might be forgiven.

On your Twitter page you express surprise to have generated such a violent response, but your own emotionally charged words have set up this response. To use the language of DBT, this "black and white" thinking has led to a response that comes from readers' "emotional mind." If you had proposed your theory a bit more cautiously, the discussions might have come instead from readers' "wise mind."

But here's my personal concern. For the past 15 years I have worked as a teacher and librarian with students and their teachers, helping them to become savvy internet users. We are fortunate to have access to a wealth of peer-reviewed research articles in various commercial databases, but many students still take the easy path of Google and Wikipedia and often rely on this kind of questionable scholarship. In this case, if they had followed my advise and checked out the Empowher "Terms of Use" link, they might have read the following statement "content is created by experts in the medical community or submitted by members of the site. The Content we write or commission is written by medical and health experts and reviewed by medical experts before it is posted." They would be led to believe that this is a reliable source of information. Of course, they would be wrong, since clearly no such peer review of this article took place. (I emailed Empowher about this and as yet have received no response.)

In consideration for the information needs of young women and men struggling with eating disorders, I would strongly recommend that you withdraw this article, re-craft the first three to four paragraphs, and then re-post it on your own blog.

I would also like to briefly comment on two generally excellent articles that you've posted elsewhere. I found the article "For Parents of Children with Eating Disorders" (http://www.trans4mind.com/life-coach/life-challenge5/poppink.shtml) very helpful, though it did concern me that you don't remind parents to think of the eating disorder as separate from the child. And finally in your otherwise excellent article "For Teens: When You Discover a Friend is Bulimic or Anorexic" (http://www.something-fishy.org/doctors/doc_article015.php) you neglect to encourage teens to tell a trusted adult. This is standard advice for dealing with suicide, should an eating disorder be treated any less seriously?

Best of luck with your book project.

-Peter

June 14, 2009 - 9:19pm
EmpowHER Guest
Anonymous

I'm greatly offended by this article. It makes people with eating disorders sound like spoiled manipulative brats.

Maybe it's the title that gets to me. Number One reason? Maybe if it was titled "One of the Reasons People get Eating Disorders" I'd be less offended.

I can understand why parents of children with eating disorders are offended by this article. I can understand why people with eating disorders are offended. I have an eating disorder and I'm very offended.

That being said.....

I think some parents on here are very narrow-minded--almost fanatical. This whole idea of "we're a healthy loving happy family and our child developed an this disease....It's a brain disorder. We're not to blame."

It just reminds me of my own family. They're not abusive. They're not horrible people. But despite what they believe, they are not perfect and wonderful parents. They have done things to hurt me.

I feel there are two extreme sides here.

There are the psychologists who want to blame EVERYTHING on the parents. As a parent myself, I hate that. I feel no matter what I do, I'm going to end up screwing up my child forever.

On the other side there are the parents who want to believe that it's impossible that they have hurt their child. These people remind me of my own parents. The message I have always gotten from them is that we have a close, loving, wonderful family. People compliment my family all the time. We look picture perfect. We're funny. We smile. We're entertaining. We do fun stuff together. And my family IS great to an extent. But we DO have our problems.
And some of those problems may have led to me eventually having an eating disorder.

Yes, biology and genetics might have played a role as well. But to discount environment in my opinion is as narrow minded as putting all the blame on parents.

June 14, 2009 - 5:44pm
Bob J.

I'm going to weigh in on the side of those who have felt hurt by some of the posts in this thread. While none of this material has been directed at me, I've felt discomforted by some of the posts too.

I'm on several other message boards and it's been my experience that things rarely move in this direction when people are required to take responsibility for what they write through signing their posts.

It's hard to ignore the fact that, despite previous mention of this issue, some of the post's I've found most unsettling continue to be posted anonymously.

Just my 2c,

Bob J.

June 14, 2009 - 3:45pm
EmpowHER Guest
Anonymous (reply to Bob J.)

"It seems to me that you are one of the clinicians that are viewing eating disorders as a diet that's gone wrong - at least to some degree. When this is done those that view it as a mental illness have trouble arguing points, because as Laura Collins put it we're doing an apples and oranges comparison.

If you're viewing it as a diet, then you are putting it into a category where someone can just quit doing whatever they're doing. You're saying that certain things can be the absolute cause of it. Really though, they're not causes rather catalysts that set off this predisposed mental illness.

If you're not predisposed to have that mental illness then no matter what circumstances surround you, you aren't going to develop an eating disorder.

If we were to focus on your article and the belief that people whose parents have no boundaries, then why doesn't everybody with a horrid child - whose parents behaved in that matter - develop an eating disorder?

It's because they're not predisposed to the development of that mental illness.?

was my, Kat's, post

June 14, 2009 - 10:03pm
EmpowHER Guest
Anonymous

Shelley,

I'm not sure if it ever occurred to you, calling someone else a bully is, in fact, bullying behavior. It is possible to disagree with another person's point of view without disparaging them.

None of the parents who have responded to this article have attacked the author or those suffering from eating disorders. Rather, every parent has been at pains to point to scientific advancements in our understanding of causative factors and modern approaches to treatment. The days of blaming and shaming patients and families are at an end. The days of trapping families in paralyzing guilt, while forcing them to stand on the sidelines and watch their children descend into an endless well of sadness, pain or even death-are over.

Our daughter spend years in the very treatment paradigm this author espouses.
It nearly cost her life, twice. When she was 21 we began family based treatment for her anorexia with the support of staff at the University of Chicago. Today she is a graduate student, has lived free from this cruel disease for nearly 3 years, and we are thrilled for her.

Eating disorders have the highest mortality rate of any mental illness.
Recovery is possible within the context of a loving determined family, and the right professional support. Every sufferer and every family deserves to know that.

June 13, 2009 - 9:27pm
EmpowHER Guest
Anonymous

Peace be among us all.

To those who suffer from ED ... whether actively or in recovery ... and those who love and care for sufferers of ED ... let us not stand separately on different sides of the street ... but rather let us join together in understanding, empathy, support, love and forgiveness.

May we all be at Peace.

CathyVeester

June 13, 2009 - 8:07pm
EmpowHER Guest
Anonymous

I didn't mean to invalidate your experience, sorry. Only you have the power to do that, really. Sorry you took my post so personally, I truly apologize. I was speaking of my own experience helping my young daughter recover from a devastating eating disorder. During her illness she thought she was fat when she was grossly underweight. She thought she was hated by her friends, when she was loved dearly by them. She thought her parents were trying to kill her by making her eat more than 200 calories a day. Now? If you ask her, she will tell you herself that the illness, the eating disordered voice in her head, made her believe these things. She truly believed them. Now she is healthy, happy and vivacious.

I don't want you dismissed, but I do want you to get the best, evidence based care available. I would want you (if I was your mom) to get the best care, from people who were up on the current research and who would treat you with compassion and care. I would want them to take you seriously as a patient, but to also let you know that you could recover and how the illness controlled your mind. I would want only the best for you. I would want full and authentic recovery for you.
Erica

June 13, 2009 - 4:34pm
EmpowHER Guest
Anonymous

"Their brains are so twisted by chronic malnutrition, and their clinicians are so willing to accept without question what these patients are telling them. "My mother controlled me. My father molested me." Maybe it is the ed talking, and not the real patient. "

Now that is just arrogant. Okay, maybe our perceptions have become distored by our illness and we might be prone to misinterpret or exagerrate things. An overprotective but loving mother might be misinterpreted as "controlling" or "domineering" by someone who is in the depths of an eating disorder. But if a patient complains about something specific like, "My father used to say I was a fat ugly cow" or "My father molested me" she should NOT be dismissed as just another "crazy" patient who is making it up.

How dare you invalidate our experiences like that! You are extremely arrogant and narrowminded ERICA!

June 13, 2009 - 11:49am
EmpowHER Guest
Anonymous

It seems to me that you are one of the clinicians that are viewing eating disorders as a diet that's gone wrong - at least to some degree. When this is done those that view it as a mental illness have trouble arguing points, because as Laura Collins put it we're doing an apples and oranges comparison.

If you're viewing it as a diet, then you are putting it into a category where someone can just quit doing whatever they're doing. You're saying that certain things can be the absolute cause of it. Really though, they're not causes rather catalysts that set off this predisposed mental illness.

If you're not predisposed to have that mental illness then no matter what circumstances surround you, you aren't going to develop an eating disorder.

If we were to focus on your article and the belief that people whose parents have no boundaries, then why doesn't everybody with a horrid child - whose parents behaved in that matter - develop an eating disorder?

It's because they're not predisposed to the development of that mental illness.

June 12, 2009 - 11:47am
EmpowHER Guest
Anonymous (reply to Anonymous)

"If you're viewing it as a diet, then you are putting it into a category where someone can just quit doing whatever they're doing."
I may have missed it, but I have not read anywhere here that anyone views an Eating Disorder as a diet. A diet may bring on the malnutrition that leads to the ED in a susceptible individual, a disorder which affects the mind and body, both a mental and physical illness.

I could post a list of studies here but instead will quote from a reliable source, NEDA, National Eating Disorders Association USA.

"Dieting can lead to an eating disorder.
Many studies and many health professionals note that patients with eating disorders were dieting at the time of the development of their eating disorder.
Dieting may not cause an eating disorder, but the constant concern about body weight and shape, fat grams and calories can start a vicious cycle of body dissatisfaction and obsession that can lead all too quickly to an eating disorder"

I like the use of the word "catalysts", I think it fits very well.
Predisposition + catalysts can equal ED.
You can't change the predisposition but you can avoid the catalysts, in most cases you can avoid the malnutrition.

June 13, 2009 - 12:08pm
EmpowHER Guest
Anonymous

It seems that all of our experiences with ED whether as a patient or as a parents have been stressful and highly emotional not to mention completly scarey so we have developed each of our own strong views. As with many disorders different treatments may be appropriate.

I think we are all agreed that abuse -physical or emotional or dyfunctional families do not always cause eating disorders. When they do, they present a much more complex picture that needs to be dealt with. No one doubts the enormous difficulties faced by those trying to recover. Those working to recover have my utmost admiration and respect. However perhaps the research about genetics is providing some light as to why although all those abused have problems not all develop an eating disorder.

Those of us who speak emotionally here about parents being blamed have also had extremely traumatic experiences but it has been in the therapy. When I look around at my friends I see families no different from my own or indeed much more authoritarian and controlling and yet their children did not develop eating disorders. Yet instead of including me, advising me how to modify my behaviour or help me provide a supportive to recovery envronment the doctors actively looked to blame. "Er no you're not too controlling, perhaps you don't do enough er no well obviously it's Dad then" For 5 years I stepped back and watched my daughter decline and attempt suicide. I watched my son in intensive care. I was devastated. I work with families with disabled children. I adore my family. Yet now not only am excluded as I wouldn't be if they had cancer because my children were going to die and it was actually apparently all my fault.

Desperate I did step in and support refeeding actually not through Maudsley but through the Mandometer program. Once nutrition started to make a difference we could see that we all had anxieties and issues which together may have been a trigger but wouldn't have been with another child or in another family. Yes for my daughter depression is a co-morbid problem and for my son and husband anxiety and I am burnt out - we all continue to receive therapy support. As with all families we continue to be a work in progress. Thankfully in recovery, they no longer blame me and I certainly don't blame them or think they were manipulative etc in any way. Eating Disorder is a terrible illness which affects the whole family.

So again anyone with an eating disorder trying to recover has my utmost respect whether parent or patient on this blog we all know how hard and traumatic the treatment process is. But I'm trying to point out the trauma that a sub group of eating disorder families go through when they are blamed and accused without ever knowing what they did wrong compared to non eating disorder "normal" families that might cause the death of their child. So yes we are thrilled our children including the adults like mine are alive and doing well. The newer research on biology and genetics is helping us all make some sense of it all.

But families are so important in life. Please wherever possible lets help families work together for recovery.

My best wishes to every family battling this disease.
Linda

June 11, 2009 - 5:42pm
EmpowHER Guest
Anonymous

I suffered from anorexia for many years, and then in my forties, began to really embrace recovery.

I am ashamed to say that during my 'active ED' years, I blamed my parents for so many things - to the point of thinking that I didn't care whether they lived nor died and thinking that I would not even cry at their funerals because, in my mind then, my parents caused my 'terrible childhood'.

During my 'active ED' years, my memories of my childhood and my parents treatment of me was skewed by my disease.

Now, in recovery, I realize that my parents were good parents - did their best - my problem was not them, but rather my own "stuff" ... genetics, personality traits, etc.

My dad died just months ago and I gave the eulogy at this funeral.
I celebrated the wonderful man, American, military hero and dad that he was.
But I am sad to think how many years my 'mixed up' mind had me thinking negatively of him.

My mom is still alive and just recently - in tears - I said to her:

"Mom, did I ever tell you how much I appreciate that - through all my challenges - you and dad were always there for me ... you never gave up on me."

She calmly answered:

"That's what mothers do."

I love my mother and my father and though it took me to recover from a mental illness to come to that realization, I am so glad that I finally DID.

God Bless you all!

CathyVeester

June 11, 2009 - 2:41pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Thank you dear Cathy for posting. I am so sorry you have suffered so long and the pain you have felt. I am thrilled you got to express to your parents your love for them and see the whole picture clearly. I know 1st hand the pain they must have felt and your words must have been balm to their souls.
Blessing on you and good health.

June 11, 2009 - 6:39pm
pixie

Thank you, thank you, Carol and Hannah!

You both expressed exactly how I was made to feel by many (not all) of the comments posted on this blog. Yes, the anxieties I felt were caused by the many extremely disrespectful comments made directly to me, that did indeed cross my personal boundaries. No one deserves to be attacked in this conversation. We all have a personal right to our own opinions. It's always so much more constructive when disagreements are handled in a polite and respectful manner. Attacking someone only makes the attacker appear to be insecure with themselves, and their own opinions.

There've been some very, very good and interesting comments posted (on both "sides") on what has turned into a "debate." However, there have also been some very ugly and hurtful comments personally directed at me. Talk about kicking someone when they're already down! Knowing I still suffer from EDs, being so rude to me with words, crossing my boundaries verbally - well that's what bullies do. I would feel extremely ashamed of myself if I'd acted like that, towards anyone.

I've repeatedly tried to be so consciencious in the way my words come across, so as not to be mis-construed by anyone reading them. Contrary to many negative comments directed at me, I have intentionally attempted to show my compassion and sympathy - while trying to tell my very personal story of my own struggles with EDs, which I seems to have fallen on deaf ears.

I was planning on not commenting to anyone else on this blog, but I wanted to thank you both for stating exactly how I was made to feel by so many (not by everyone, but by many of the other posters).

Bless you Both!!!
Shelley

June 11, 2009 - 2:12pm
EmpowHER Guest
Anonymous

For some reason I feel like much of this whole conversational debate could have been avoided if Joanna had included some reference to the current research. Maybe talked about genetic predisposition and malnutrition as triggers coupled with psychological stressors. All the boundary violations in the world happening daily won't cause an ED unless one is predisposed to it. It just sounds WRONG, given all the research that's going on right now, to put up this theory that excludes biology from the mix.

June 11, 2009 - 11:43am
EmpowHER Guest
Anonymous

Hi Hannah, Carol and Shelley--

I realize this topic is emotion-ladened for all--parents and sufferers alike. Parents reacted because the article, the way it was written, sounded as though it was blaming the family environment of sufferers 'in general' and that it was true in all cases (e.g. 'with every person suffering an ED').

From a parent's perspective, this is hurtful, harmful and--even if none of us are perfect parents (and we aren't)--it is most often not true. That is not to negate anyone's individual feelings about their families, but our perceptions and understanding of this illness are colored by our own personal experiences. Recent research is shedding so much new light on ED's. No one need feel 'to blame'. When blame is eliminated, it frees everyone to concentrate on recovery.

I didn't want a family new to the experience of having an eating disorder in their midst, to read this article and instantly feel tremendous guilt and shame. I wanted families to know there was a way--a treatment method--that would help them reach out and help heal their very much loved one. I also didn't want anyone suffering from an ED to feel blamed or be forever searching for causes when they could get on with healing their body and mind. This is not to say talk therapy is never useful--it can very much be for co-existing anxiety and depression. Do families never have personal issues that need resolving? Of course not. Do most families want to function well and see their loved one healthy? Of course. FEAST believes nutrition has to be first and foremost and that what supports the family will support the person suffering. I also believe that coming from a position of blame helps no one move forward.

So, I want to reach out and say I am sorry if any of you are feeling blamed. It is not the intention of anyone to project that towards sufferers or family members affected by an ED in their family.

To the contrary, we very much understand how that feels, and the Maudsley approach blames no one. It is an illness, the same as you would view other illnesses.

If nothing else, this exchange demonstrates the upset that the perception of feeling blamed can cause (and I doubt, really, that that was even the intent--but how one sends a message, and how one receives it can be two different things!). I might add, the reason I wrote some words in caps in past posts is because I couldn't figure out how to underline or italicize on this blog. I was not intending to yell (except for the one comment about 'the emperor'), but to emphasize. I can't do it in a real 'voice', other than change the lettering.

I, also, am leaving this conversation at this time as I have expressed what I felt I needed to.

Thanks,

anne

June 11, 2009 - 11:38am
EmpowHER Guest
Anonymous

The more I read, the more I have to agree with Carol – not because I believe that parents cause an ED, but because the parents in this thread basically make it about them, and them only, thereby completely invalidating anyone else's opinion. I find it kind of disheartening, even though I understand that having your own child succumb to such an illness must be terrible. It's just that it seems so … familiar. It's always about someone else, about what they do, about they help. All of which is appreciated, all of which is also exhausting, all of which is stifling me in the end.

Oh well, maybe I am manipulating or unable to cope here or whatever form of judgment I'll have to face now. It's the same kind of farce that always seems to happen – everyone's good intentions ultimately just lead to a lot of bickering about how to best proceed, but no real progress is ever made, and it all goes right over my heads and the only thing I get is that I am somehow responsible for turning everything into such a bloody mess. It always makes me want to apologise, for not being perfect, for not being like everyone else… and here we go. It's a funny thing, a family.

No offense intended, none taken. I mean it.
Hannah

June 11, 2009 - 9:41am
EmpowHER Guest
Anonymous

Where is the evidence to support this theory that "boundary issues" are the number one cause of eating disorders?

I have never read or heard that from eating disorder experts/medical information anywhere.

No scientific evidence to support this theory coming from a person who practices therapy specializing in treating people with eating disorders.

And you wonder why people are upset to read this article?

June 11, 2009 - 8:15am
EmpowHER Guest
Anonymous

Carol,

Sorry if you find some comments RUDE.

What many are saying is that PARENTS are NOT THE "Number One Reason" Why People get Eating Disorders.

Any therapist who holds that point of view stands alone among what 21st century professionals/experts know about causes of ED.

Any therapist who tells you that is doing YOU and others more harm than good.

Sorry.

I wish you well, too.

June 11, 2009 - 5:57am
EmpowHER Guest
Anonymous (reply to Anonymous)

Hey there Anonymous,

You just proved Carol's point. The article says boundary violations are a prevailing theme in the lives of people with eating disorders. The article never says, in your shouting caps or in small type, that parents are the number one reason.

The article discusses varying kinds of boundary violations and their consequences.

Did you identify with those boundary violations? Is that what is so upsetting to you?

Any why would you attack Carol and try to undermine her recovery work?

Do you try to undermine others, perhaps even your child, when they say something that you disagree with or something that points to a possible flaw in your beliefs?

Just wondering......

June 11, 2009 - 6:20am
EmpowHER Guest
Anonymous (reply to Anonymous)

To the person who questioned my reference in bold caps to "Number One Reason", did you even bother to read the TITLE of Joanna's article???

Just wondering ...

June 11, 2009 - 7:08am
EmpowHER Guest
Anonymous (reply to Anonymous)

From the opinion piece above: "Early in their lives, people with eating disorders have experienced, on a sustained basis, relentless boundary invasion on every level."

Who is it suggested did this supposed "boundary invasion", WHO is the most likely causative factor according to this statement?

Just wondering....

I wish you well in your recovery.
MS

June 11, 2009 - 6:54am
EmpowHER Guest
Anonymous

I think this entire conversation validates Joanna Poppink's conclusion from years of practice with eating disordered adults that boundary violations are a common theme in those who develop eating disorders. Those of you who are dogmatic, vociferous proponents of the "Maudsley Method" and F.E.A.S.T have violated the boundaries of those of us who did experience these boundary violations and did develop eating disorders. It is not surprising to me that the mothers completely deny that they may have in any way contributed to their child's issues, except to concede some kind of genetic predisoposition. Your disrespect for those of us who are/were children who had/have eating disorders that is at some level connected to our parent's relationship with us only reinforces Joanna's point. You can't know what you aren't willing to acknowledge in yourself.

Any treatment modality that states that parents are never to blame completely denies the experience of what I can only imagine are millions of women and men who suffer from eating disorders.Maybe you just need to drop the word blame - it's too loaded and doesn't even begin to address the nuances of a complex relationship that involves love and compassion as well as mistake and injury. You condescendingly deny and question my reality which leads me to the conclusion that you don't respect boundaries and that you have to be right.

I'm not willing to read this arm-twisting, narrow-minded, rude conversation any more. I wish your children well....

Carol

June 10, 2009 - 10:36pm
EmpowHER Guest
Anonymous

To the parent of the college student eating noodle dishes, google 'amino acids' and read about the essential 8 in particular and their role in brain health. The '8' can not be stored; they must be consumed daily.

If one is predisposed for eds and has a slipshod diet, look out. And, of course, many college students, active teenagers, new moms, busy adults, athletes, work-a-holics, etc etc. have incomplete nutrition.

I so identify with the 'forgot to eat' comment. 'Forgetting' is so common and yet can not be afforded by our predisposed kids. About a month ago, I 'forgot' to eat lunch one day. I had made a beautiful roast beef & cheddar toasted sandwhich and set it on the counter to cool. Suddenly, life exploded in our busy household of 3 teenagers. An hour or so later, I went to the kitchen hungry enough to eat a table leg and discovered the sandwich and commented out loud that I had "forgotten" to eat it. While I was eating it, there was another interruption, and my recovered daughter came into the room and told me 'I've got it; you need to eat your lunch.' Music, sweet music :-)

Z

June 10, 2009 - 6:31pm
EmpowHER Guest
Anonymous

Shelley wrote:
"I have a very large family on both sides. I am the only one I know of who has struggled with EDs. If my EDs are genetic, I do not know where they come from."

From what I understand, and I am no scientist or clinician, one can be 'predisposed' and never trigger. It was only after my daughter's illness that my sister told me she experienced bulimia as a teenager & very young adult (she purged w/laxatives); our family never knew this, and my sister said she didn't realize that was ed behavior until more than a decade later.

To deny that there is a biological component to eating disorders - and I'm not saying Shelley is because she was 'speaking' to her situation specifically - is to deny current, up to date research. The genetics aren't fully understood yet (someday?), but I would think that understanding that malnutrition is the trigger for eds vs eds triggering malnutrition would be received as good news....because surely we all know the proper treatment for malnutrition is full nutrition.

And a well nourished brain can reason and work through any possible comorbid 'issues' more readily than one that is starved/semi-starved.

Anyway, parent prepared, served & supervised full nutrition and healthy weight restoration saved my daughter's life where 'traditional' therapy failed. She is, once again, a total delight to all who know her, living her own life, preparing for university in the fall, and she has on more than one occasion thanked me and her dad for saving her life. We were grateful to be God's Hands in the situation.

For an adult who is still struggling w/an eating disorder, I would encourage them to read the newer studies and find a physician who embraces evidence based treatment and work with them. Perhaps the adult has family or friends who can help with food shopping and meal prep to relieve some of the anxiety?

Being the loved one trying or wanting to help an adult recover can surely be complicated....which is additional motivation for parents with ill children to seek out evidence based treatment and recover your child ASAP.

I hope my post is helpful to someone, and I offer my very best wishes to all.
Z

June 10, 2009 - 6:15pm
EmpowHER Guest
Anonymous

http://www.shanguisinger.org/wp-content/uploads/2008/03/guisinger-an-pr-...

An excellent piece of work by Shan Guisinger on the development of Eating Disorders. Well worth the read with many theories and much scientific evidence presented.

MS

June 10, 2009 - 4:45pm
EmpowHER Guest
Anonymous

The point about malnutrition as a trigger is interesting.

My daughter's anorexia began while she was away at college and got her own apartment.

She said that it was common for the students to live on Rami noodles and light snacks for meals as they studied away - and that is what she did.

Her mini-meals became such a departure from the substantial meals we served up at home.

In IP, she told the doc that she basically "forgot" to eat .... and frankly, there is some truth to that.

Whether the start up was all about 'forgetting' to eat or numbing herself to the stresses she was coping with ... probably a combination of both and so much more ... malnutrition definitely played a role in triggering the start of this horrid anorexia.

It didn't help, either, that she inherited the anorexia gene, in that I, too, suffered from anorexia during my college years.

June 10, 2009 - 3:13pm
pixie

This is in response to the Anonymous, unsigned post above, 10 June, 8:37 am.

The 17 years I've been in therapy/counseling (off and on, mostly on) were not for EDs. I was learning how to conquer other issues that I'd had in my life (survivor of childhood sexual abuse, raised in a religious cult that demanded perfectionism, many fears and phobias, the daily/normal stresses of being a divorced single mom of 2 young children, not being able to live near any family for emotional support, rejection/trust issues, the trauma of witnessing a plane crash at age 9, being date-raped as an adult). Then, in 2007, I developed serious, full-blown bulimia - that was when I began therapy for EDs with the therapist I'd already established a relationship with (who is a recovering anorexic). She, along with my other "helpers", literally saved my life. During this time, I was extremely successful and functional. I received 3 promotions at work and was given much higher responsibilities. I also took 2 college classes, 2 nights a week and received A's. Not many people knew how sick I was during that time.

I have a very large family on both sides. I am the only one I know of who has struggled with EDs. If my EDs are genetic, I do not know where they come from.

I am a great mom, always doing the best I know how for my children. I have 2 boys, now ages 16 and 18 (no daughters). I've raised them on my own for 15 years. I've been told many, many, many times over the years (by school teachers, school counselors, school principals, family members, close friends, therapists) that I am a great mom.

You asked, "How will you feel about your motherhood skills should one of your daughters become a suffer of an ED?" I would still believe that I am a great mom, and I would seek out the best treatment possible for her. I would look to myself, to see where I possibly made mistakes that could have caused this disorder for her. While I know that I am a great mom - I am in no way a perfect mom (none of us are - it would be completely unrealistic to believe we were). I would be open to how I could have (unknowingly and unintentionally) contributed to her ED. And I'd want to know what else could have contributed to her development of an ED.

You then asked, "If your daughter developed ED, would you then question your motherhood skills? Would your opinion of yourself as a GREAT MOM suddenly shift to your thinking of yourself as an abusive mom?" Again, while I am in no way a "perfect" mom, I am still a great mom. Looking to myself to see how I could have possibly contributed to her ED is a far cry from being an "abusive mom." I'm not an abusive mom, just because I unknowingly and unintentionally make mistakes in the raising of my children.

We, as parents all make mistakes with our children! Children don't come with an owners manual! Most of us do the best we know how and only want the best for our kids. Even so, we could still possibly contribute their development of an ED.

In response to your last sentence: I've repeated stated in other posts that I cannot imagine what parents of a child with an ED (a life-threatening illness) go through. I don't know how else I can say it! If you were to read some of my other previous posts, you will see where I've repeatedly stated just that. How is it that you want me to put myself "in the place of mothers who thought they were great moms until ED came on the scene with one of more of their daughters" when you know I have not experience it myself as a mother? You most respectfully have my sympathy and compassion! Unless I've lived through something you have lived through, exactly like you did, that's all I can do - sympathize and attempt to show my compassion for you.

Please understand that I mean no disrespect whatsoever! I admire all parents who has had to endure the awful tradgedy of having a child suffer with a life-threating illness. Thank God so many of them have gotten better!!!

Shelley

A note to all: I posted last night I am feel like I should "pull out" of this discussion, which seems to be mostly made up of parents with adolescents who have EDs. The fact is, my situation and perspective is different from yours. Honestly, I have felt challenged, attacked and judged by many of the posters on this blog. I have in no way meant any disrespect to anyone, by anything I've said. I've stated my opinions, told what worked for me, stated that I support Joanna Poppink 100%, and that's really all I can say. Anything else would be just repeating myself. Everyone, respectfully, has a right to their own opinion.

With that I will now "bow out". I respect myself too much to allow to be a participant in this discussion any longer. I'm so glad, because of Joanna, I have found this wonderful web site! Maybe I'll run into some of you on other discussion blogs.

Peace, Blessings, and Healing Light,
Shelley

June 10, 2009 - 3:01pm
EmpowHER Guest
Anonymous

From Z "with causes of that malnutrition being myriad and often inadvertent."

One can become malnourished in many ways, sickness, trauma, dieting, rapid growth, purging, drug or alcohol abuse, bariatric surgery, uncontrolled malabsorption issues, and I'm sure I've missed some.
The point is that Eating Disorders are triggered by malnutrition, many of the paths to malnutrition are not a choice, being genetically susceptible to an ED is not a choice.

***********These are diseases not choices************

June 10, 2009 - 2:58pm
EmpowHER Guest
Anonymous

I left off, but may I add that all forms of abuse, violence, and loss could certainly cause loss of appetite, and haven't we all read/heard of some people experiencing abusive nutritional deprivation? Not all go on to 'trigger' eds; there is an as yet not completely understood biological (genetic) element.

Mounting evidence is pointing to malnutrition as the 'trigger' for underlying eating disorder predisposition....with causes of that malnutrition being myriad and often inadvertent.
Z

June 10, 2009 - 2:34pm
EmpowHER Guest
Anonymous

From one of Shelley's posts:
"Does the Maudsley Approach teach that recovery is permanent, and that your daughter does not ever have to be on guard, or be aware, if her eating disorder starts creeping back into her life?"

Shelley (and others), many of your questions can be answered by reading about the subject. Information is widely available. Please read 'How to Help Your Teenager Beat and Easting Disorder' by Drs. Lock & LeGrange and 'Eating With Your Anorexic' by Laura Collins. You can also check out the websites of the Universities of Chicago and San Diego and the work of Dr. Walter Kaye. The work of Dr. Ancel Keys with the Minnesota Starvation Study is also eye opening and a summary can be read here http://gunpowder.quaker.org/documents/starvation-kalm.pdf

Anything that causes malnutrition could 'trigger' an eating disorder in one who is predisposed. In the case of my own 18yo daughter (recovered for more than a year now), she understands that full nutrition for life is necessary to keep her healthy.

What does that practically mean? She must take extra care not to become malnourished. Think of all the situations where one might become malnourished....a growth spurt, 'losing the appetitie' for whatever reason, stomach bug, oral surgery, pregnancy/recovery from pregnancy, too busy schedule which doesn't allow for proper nutrition & rest, traveling or relocating to an area where the 'diet' is different to what one is accustomed, 'making weight' for a particular sport/activity, dieting, adjusting to chronic illness such as diabetes.....the list is probably endless.

We consider our daughter completely fully recovered from her bout with a triggered eating disorder; so does she. HOWEVER, we fully understand she could 'trigger' (or 'trip the wire') again if she becomes malnourished and loses weight; she understands this as well. But our family refuses to be held hostage by this disorder; it can clearly be treated with full nutrition, so we will not be afraid of 'it' again. Once it is understood that it's malnutrition that triggers the ed vs the ed triggering malnutrition, parents/caregivers can more confidently intervene nutritionally.

We do not look at eds as boogey-men that jump from behind bushes or beneath beds. My husband and I believe triggering eds is preventable, and we (now) confidently parent accordingly. We have children other than the daughter who became ill, and considering there is a biological element to this disorder (although not fully understood) and since there is no genetic testing at this time of which I am aware, we are assuming all of us (mom, dad, children) have the predisposition for eds and live accordingly....meaning we take extra care to avoid malnutrition....which basically means we enjoy meals & snacks together, and we support one another during times of illness and/or stress. Sounds pretty loving and 'normal', don't you think? ;-)

I hope this has made sense and is helpful to someone.

Best wishes.

p.s. I don't mean to post as 'anonymous', but, technically challenged as I am, I don't know how to change that. So, I'll sign here: Zeri

June 10, 2009 - 1:52pm
EmpowHER Guest
Anonymous

Assesment of social support dimensions in patients with eating disorders.Quiles Marcos Y, Terol Cantero MC.
Departamento de Psicología de la Salud, Universidad Miguel Hernández, Alicante, Spain. y.quiles@umh.es

The aim of this study is to assess social support dimensions (providers, satisfaction and different support actions) in patients with eating disorders (ED), looking at diagnosis, socio-demographic and clinical characteristics, and self-concept. METHOD: A total of 98 female ED patients were recruited. The ages of participants ranged from 12 to 34 (Mean = 20.8-years-old, SD=5.61). Patients have a primary DSM-IV-R diagnosis of anorexia nervosa (61.2%), bulimia nervosa (27.6%) or an unspecified eating disorder (11.2%). Social support was assessed using the Escala de Apoyo Social Percibido (EASP). This scale measures social support providers, satisfaction and specific social support actions, which can be grouped into informational, emotional and practical support. Self-concept was assessed using the Cuestionario de Autoconcepto (AF-5). RESULTS: The two most frequent providers for these patients were mothers (86.7%) and partners (73.1%). Patients' satisfaction with social support was high and they reported that they received informational support more frequently than emotional and practical support. Family self-concept showed positive relationships with social support dimensions. CONCLUSION: These results show the importance of the family network in connection with these disorders and its relation to self-concept.

PMID: 19476235 [PubMed - in process]

Looks like the evidence is mounting that families are not to be rejected but embraced, with all their quirks, into aiding ED recovery.
MS

June 10, 2009 - 9:48am
EmpowHER Guest
Anonymous

To the person who posted above me.

My apology.

You are so right. Sons do get ED, too.

My concentration on talking about mother/daughter is based on my own experiences in the multi-family therapy group.

But no doubt about it - we need to all remember that males get ED, too.

And ED can come into one's life - either gender and at any age.

My brother, who is 57 years old, has developed an eating disorder. He lost a great deal of weight after my dad had a stroke and they both gave up drinking. Dad died and that put a great deal of stress on my brother. He seems to have taken on ED as a way to cope with this stress. People have told him OK Carl, it is time to stop losing weight. But he shrugs those comments off and continues to diet strictly/lose weight.

Much has been learned and needs to be learned about ED.

June 10, 2009 - 8:06am
EmpowHER Guest
Anonymous (reply to Anonymous)

The statement here is that your brother lost weight due to the stressful situation of losing his father. A very normal reaction . However if he has an underlying brain disorder that renders him susceptible to anorexia as little as 5 or ten lbs below his set wt. can trigger AN. That is why saying "Carl you must eat" doesnt work. The disease wont let him make that choice. His irrational thinking is caused by the ED. The only hope he has is to be re-nourished . . Unfortunately it is hard to do since he is an adult and cant really be forced into being refed. Carl has a disease that is not his fault and has nothing to do with willpower or the desire to kill himself .He wouldnt have quit drinking if that was his goal. Now that he is a prisoner of an undernourished brain obsessions and depression will rule him.
That is the most frustrating part.{ There is some evidence and studies that suggest using short term atpical antipsychotics can help them see more rationally }
That is why when a child develops ANOREXIA it is up to the parents to make sure that they are re- fed asap. Then the underlying comorbid conditions if present can be addressed in therapy etc.after their brain has been renourished . I e anxiety /esteem issues etc.
So if a therapist or "eating disorder specialist" is blaming the parent or tells the parent/ family of a child to stay out of the food issues and leave it up to them, dont walk out on their office RUN!
Jane

June 10, 2009 - 12:37pm
EmpowHER Guest
Anonymous

Shelley,

You mention that you are a more than three decade sufferer of ED, with recent flare-up of restrictive bulima; you have been in therapy for more than 17 years; and you defend Joanna and her theory which has no scientific data to support.

Many of the mothers in our multi-family group therapy that we attend with my daughter who suffers from ED - many of these mothers had/have ED themselves. And generally, if the mom had/has anorexia, the daughter has anorexia; mom has bulimia, daughter has bulimia. I'm referring to the mothers/daughters in our group. There is a clear genetic component.

You also mention that you are a great mom.

Do you have female children?

How will you feel about your motherhood skills should one of your daughters become a sufferer of an ED?

If your daughter developed ED, would you then question your motherhood skills? Would your opinion of yourself as a GREAT MOM suddenly shift to your thinking of yourself as an abusive mom?

Just curious.

I would love for you to put yourself in the place of mothers who thought they were great moms until ED came on the scene with one or more of their daughters.

June 10, 2009 - 6:37am
EmpowHER Guest
Anonymous (reply to Anonymous)

So well said!

A note though, the genetic link could well make a son more vulnerable to this awful disease. Watch out for your sons too!
From PubMed:

http://www.ncbi.nlm.nih.gov/pubmed/11262504?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=2&log$=relatedarticles&logdbfrom=pubmed

June 10, 2009 - 7:54am
EmpowHER Guest
Anonymous (reply to Anonymous)

Shared genetics, again from ED experts, Dr M. Strober, Dr W. Kaye et al on PubMed:
http://www.ncbi.nlm.nih.gov/pubmed/10698815?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=1&log$=relatedarticles&logdbfrom=pubmed

FACTS we do know:
1.The rates of ED's are higher in families with a shared gentetic pattern.
PubMed.
2.An equal number of ED sufferers to that of general population have suffered abuse. PubMed.

Joanna, I have to ask,
how can you substantiat the hypothesis you present here?

If it is simply on cases you have seen, how can you dismiss experts, yes experts, such as Laura Collins, who I would sugest has had contact with many more acknowledged experts in the field of ED's and probably as many families and sufferers as yourself, when she questions the vaildity of your hypothesis?

I would like to see your evidence posted here. I respect this is your theory but others, vulnerable sick ones and their faimlies could be very damaged by your theory.
Without evidence, this is, just a hypothesis, not fact.
MS

June 10, 2009 - 9:06am
pixie

I posted this earlier, but with so many posts (I cannot seem to get to them all), what I'd written may have been missed by some.

I know in my heart that a big part of the reason I have ED's is that I was sexually abused by my father, in my own home, at ages 11-12. My mother had no idea (I determinedly kept it a secret from everyone), and she was a great, very loving mother (she still is!). Being sexually abused is the ultimate crossing of a child's boundaries. That is what happened to me. I'm in no way at all saying that is the reason for any other people developing ED's! I'm only telling my own, very personal story.

I, too, completely respect the exchanges of thoughts from all who have posted. Again, as an adult with ED's (not an adolescent with a loving family to help me in my recovery) I had a very difficult time finding the help I needed; the help that would work for me.

And again, I completely respect the parents who have a child that sufferes from this disease. It is a tragedy that I cannot comprehend, or even imagine!!!

My posts are only meant to show who I am, as a grown woman, and to express the compassion I feel for parents who feel so desperate and helpless in helping their children to get well. That is all I mean to do.

It's difficult to express oneself in this type of forum. If we were all sitting in a room in a circle, facing each other, I believe it would be so much easier to be understood in the way we intend.

It seems like this particular blog is mostly parents of adolescents who have suffered from ED's. Maybe I should just pull out and not post here anymore. I'm really feeling like I'm an isolated island in the middle of an ocean.

I've told my story. I hope that maybe someone can gaine some sort of inspiration from it. That is all I can do.

Shelley

June 9, 2009 - 9:17pm
EmpowHER Guest
Anonymous

I respect the recent exchange of messages that are authentic, validating and demonstrate the human aspect of the emotions brought up here. A synthesis is that all consumers, parents/caregivers, etc. deserve the choice of what treatment providers and approach will most effectively meet their needs. The only way to do this is to have such dialogues and to make resources/research available. There is no such thing as the best approach or one that works for everyone and in every situation. However, each person/family needs to know what their options are and to know that recovery is possible and does happen. ED is mean, vicious and relentless so arm yourselves with a golden fork! (wink/wink) SBM

June 9, 2009 - 7:38pm
EmpowHER Guest
Anonymous

Shelley--

Whenever one writes publicly online (be it the author of an article or people who respond to it), you take a personal risk. You expose yourself to praise or criticism for your views.

In the end, my hope is that this back and forth discussion provides new information and ways of looking at ED's. I hope it helps therapists know how it feels to be sitting in the shoes of a parent. It's pretty obviously an emotional topic for many of us. Some of that emotion comes simply from the nature of the illness. Some comes from the way it is sometimes treated (or maybe I should say families are treated).

I don't know Ms. Poppink personally, so in a sense am 'attacking' the theories she presented and that I feel are very outdated. You are defending a person you like (and that I don't even know). Maybe this is a fine line, but in my heart, I can't support a perspective that smacks of blame or finger pointing. Simply put, it just doesn't help anyone get better.

I know many people from the Around the Dinner Table's parent group who's children have recovered with the Family-Based Therapy Approach (Maudsley). If a relapse does happen, parents step right up again to help. They have the know-how to do this. And, the 'outcomes' of Maudsley treatment are pretty impressive. That's why its the recommended treatment of choice for adolescents.

Thanks for writing,

anne

June 9, 2009 - 7:23pm
EmpowHER Guest
Anonymous

Shelley I can see that you are upset by the previous person's comments. I have watched my children (and my son did not get AN until an adult) and they both completely lost emotional perspective. As another person mentioned all families have issues if you dig deep enough. My son was correct when ill saying his Dad was very busy and had high standards. BUT these were no more and a lot less than many of his friends fathers. The issue was that my son's innate anxiety combined with huge weight loss following mono made his emotional reasoning very black and white and over sensitive. However this thinking was a reality for him at the time- a real and genuine belief. He was not and is not manipulative by nature. However, because he genuinely and truely believed it does not make it true. He was also (and continues to be)a top law student, very intelligent and articulate with empathy for others and even honest to a fault. For him the pressure from his Dad may have been one of the triggers but in most families this would be considered quite normal.

It is the combination of the trigger and the individual at risk which is the problem. I work with families with children with servere language and learning problems. Except in a very very small minority of cases (actually I haven't seen any in 20 years) parents do not cause the problem certainly not stuttering or autism, language disorder etc. However, by getting the family to work together creating an environment in which the child can learn more readily they can make huge strides and progress and yes even overcome a disorder. God forbid that we should start taking all these children away from their parents.

Of course the younger the better, so that appropriate patterns can be laid down in the brain. Stuttering can be eliminated in the young child but after 6 years the child has to learn to 'manage" the stutter. They see the world through the eyes of a stutterer. We do know that early intevention is also more effective in eating disorder and that the patterns and thinking become more entrenched with time.

The issue of boundaries is certainly a chicken and egg situation and I believe is there for any illness. Any family member who is ill may have others intrude more than they would like.

Nothing is clear cut and there are degrees from severe emtional physical abuse to the normal caring loving families. However, if imperfect families are the cause than 100% of the population would have an eating disorder. They don't. So except with the extreme cases lets move past this blame game and help families work together to create an appropriate healthy environment for their loved one to recover. I do mean actually recover and not just help their loved one accommodate an eating disorder. This doesn't mean that the patient will like it at the time any more than they would like chemo if they had cancer!

Thankfully my son and daughter now see us parents for what we are. Loving, caring imperfect beings with our own fears and anxieties and old fashioned opinions that they may disagree with but who always did what we felt was right at the time. In their eating recovery they continue to see a therapist to build up their resilience and deal with their anxities. They both have learnt that regular meals and keeping above an individual (personal to them) minimum weight is essential for their physical and mental wellbeing.

I wish you the very best Shelley.
Linda

June 9, 2009 - 7:10pm
pixie (reply to Anonymous)

Hello Linda,

No, I honestly am not upset by anyone's post. For me, this is a great open dialog that I hope will ultimately bring more awareness for those who are looking for answers!

I will admit I am definitely "defensive" when it comes to Joanna Poppink, because she has helped me so much, personally.

I truly am so glad your son survived his ED experience and received the treatment he so desperately needed! And I'm also glad that it seems to have ultimately "helped" your children to see you "as parents for what {you} are, loving, caring, imperfect being with {your} own fears and anxieties...." That is truly a miracle! How wonderful! :)

Shelley

June 9, 2009 - 9:31pm
EmpowHER Guest
Anonymous

Take advantage of your professional degree and talk to some people who are real experts in eating disorder treatment. Boundary violation? Like having a diary read and having laundry done by a parent? If so, it's a wonder every single person in the world doesn't have an eating disorder!
I can't believe, given all the research that's been done, that you would even post this; it makes you look quite uninformed.

June 9, 2009 - 6:55pm
pixie

Hi Anne,

Oh boy, I cannot imagine the desperation you were feeling when your daughter was so ill - in crisis - and how overwhelming you must have felt at the time, to save your daughter's life!!! What a horrible nightmare you went through!!! The only way I can even come close to relating to what you must have been going through at that time was when my youngest son was unexpectedly hospitalized for a serious, life-threatening staph infection in his leg at age 9. He could have DIED!!! I remember being in the hospital with him and thinking what my life would be without him in it. It was so devestating and heartbreaking (thank goodness he fully recovered and is now 16 - during that same time his daycare teacher died from a staph infection, which magnified the seriousness of his illness even more to me).

I most definitely agree with you that parents must be allowed to choose the treatment that they think is best for their child - after being fully informed of all of their options!!! I am so sorry that you had to face decisions that had to be made, basically on the spot, in order to save your daughter's life! That was so wrong of the professionals to not take you aside, and calmly fully explain out all of your options available. And I'm sorry for the trauma you daughter, you and your family went through by putting her in a facility that would not let you see your child, or participate in her therapy sessions. I don't know if their way is right, or wrong, but I would have felt exactly like you and wanted to go in there and drag my daughter out of that place! I don't know if that would have been the best thing for my child, but it's what I would have done if I'd been put in your position at that time. It's in the past now, and it sounds like everything has turned out good for your daughter and your family, so far. I hope your daughter's recovery continues, and that her eating disorders to not come back. Does the Maudsley Approach teach that recovery is permanent, and that your daughter does not ever have to be on guard, or be aware, if her eating disorder starts creeping back into her life? I hope it doesn't, but please be aware that maybe it could (at least in my opinion).

I have an ex-sister-in-law who was in a treatment center for 4 weeks when she was in college for anorexia. She is now 45 years old, and her anorexia has reared it's ugly head again in her life, just in the past two months. All that time, and it's back. She has been through so much in her life over the past few years, and I think it's subconsciously her only way of coping. Even though she lives in another state, I am in close contact with her (we relate well to each other, both single moms, etc. - she opens up to me and shares about her ED struggles - we consider each other "soul sisters"). I'm loving her and giving her all the support I know how to give. But I cannot "cure" her. She is an adult. Besides therapy, where else is she supposed to turn? She has children to raise! Oh, I feel her pain... I have been there, too. I know that pain and desperation, always hoping and praying that I do not emotionally "damage" my children in any way because of my disease. (As far as I know, my boys do not know about my bulimia. They're kids and I don't want them to "worry" about their mom.)

Personally, for me, it helps to know that my "helpers" (therapist, nutritionist) have also suffered from eating disorders themselves. As the adult patient, it is such a relief to have someone else there who has "been there," and who knows exactly what I was feeling and going through! These two women that I was so blessed to be led to have shared so much of their own personal stories with me, and that actually helps me in my healing and recovery process. No, my situation and "story" is not exactly the same as theirs, and I do not always agree with everything they say! That is my right not only as their patient, but as a human being! I take what resonates for me, and leave the rest (and I tell them that!). :)

I've always used my strong intuition when I need to, especially as a mother. When my older son went through so many tests as a young toddler and into his elementary school years, I remember thinking, "I cannot ever give up! I must continue to educate myself, learn everything I can, learn all of my options, and then make the best decision I can for my son." I know that learning disabilities cannot compare to any life-threatening illness of a child! I'm just trying to express to you that I do know what it's like to be a good mom, the best mom I can possibly be for my two boys, always only wanting the best for them, and feeling so heartbroken to see them suffer and struggle. We'd all, as parents, trade places with our children in their sufferings if it were possible!!!

These women who I refer to as my "helpers" are stable professionals, personally experienced in my disease, and open up to me with their own personal stories. I feel so blessed (I know I just used that word - but it's how I feel!) to have them in my life, helping me to get well. And they have both shared the struggles they still, personally have with their own disease. For instance, they know their food "triggers" as do I, and they stay away from those triggers in order to stay well. It gives me "hope" to learn from them. They are wonderful, strong examples to me. This is what works for me, and it probably would not work in the same way for a younger person, adolescent or child - I don't know for sure. I just have to keep looking forward and relying on the support that I have in them!

Anne, I owe you an apology. It's been nagging at me all day. I was pretty hard on you yesterday in my original post to you about Joanna. I feel very defensive of her because she, too, has helped me so much because of her knowledge and her own personal experiences. I "reacted" and I should not have done so in the manner that I did. It was disrespectful of me to act like that towards you, and the others who I felt were "attacking" her. Please accept my humble apology (that goes for everyone else, too). I still love Joanna and support her (she's an adult, like me, and her experiences give me "hope" also, like my other "helpers"). I personally relate to her and appreciate her and the help she's given me.

Love and Light,
Shelley

June 9, 2009 - 6:42pm
EmpowHER Guest
Anonymous

http://maudsleyparents.org/bulimianervosa.html Books on the approach should be available at your local library for loan if you're interested.

June 9, 2009 - 5:52pm
EmpowHER Guest
Anonymous (reply to Anonymous)

The above was meant for Shelley, who asked about bulimia.

June 9, 2009 - 5:59pm
pixie (reply to Anonymous)

Thank you so much for your response back to me.

I saw that there were a few books that they recommend. Doesn't it seem like they're really about treating anorexia in adolescents? And not much about bulimia? That's what I thought, anyway, when I went to their site. And what about treating the "adult" with eating disorders? I feel like I'm in a very small minority, sometimes. It's been very, very difficult for me to find much information for those of us who develop out of control eating disorders in their 40's, 50's, 60's, etc.

Although I've had eating disorders since I was very young, bulimia became completely out of control, and life threatening, two years ago - when I was 44. Talk about feeling like a minority! I know there has to be more people like me. Maybe they don't seek out treatment/help to get better? I don't know. I just know that sometimes it's hard for me to relate to others who experience ED's. I can remember what it was like as an adolescent (with no help or treatment) and into my 20's and 30's - but I always managed to keep it a "secret." And I survived, both physically and emotionally.

If I lost weight and was "thinner" everyone commented on how great I looked. They didn't know I'd starved myself to get that way. Even two years ago, when I lost way, way too much weight from starving, and purgeing (throwing up) ANY food I ate, SEVERAL people (especially the women) I work with would tell me how GREAT I LOOKED!!! I looked like a walking corpse. My own mother did not recognize me when she came to visit - she was so shocked by my awful appearance. I was dying. I was literally gray. My hair didn't grow for over a year and then started falling out - and the women at work were telling me I looked great! How SICK is that? How sad...

Shelley

June 9, 2009 - 6:56pm
EmpowHER Guest
Anonymous

Several thoughts flashed through my mind as I read the last few posts.

First and foremost, as is evident by the many posts, people have varying views on how best to treat ED's. As a parent, when you first go for help, this dichotomy of approaches should be fully explained. Parents need to be made aware of the differing viewpoints and ALLOWED TO CHOOSE their path of treatment. This didn't happen for me and my family and I think that's a very common experience. As for 'different approaches work for different people'--Richelle, these were the EXACT WORDS a highly regarded ED nutritionist said to me when I first sought help and asked about evidenced based practice for adolescents. Perhaps in a highly theoretical way this is true, but I needed specific, concrete help in a big hurry--we were in a huge crisis. I needed RESEARCH driven information. I needed phone numbers. I needed a how-to manual. I needed support. And I needed to know specific options. I am certainly smart enough to figure out what is best for my family. When I asked questions (and they were good questions)the answers seemed so vague. And, it left me reeling...was ED treatment really this fuzzy? (FYI, this was back in 2003)

Second, I have heard (and Shelley, you've verified through your own personal experiences for me) that therapists and nutritionists often have a history of past ED's themselves. If this is the case, I think it's an extremely important piece of information they should share with parents seeking services. Why, you might ask? (and you might say that this is a 'boundary violation' itself). However, having had a past ED might strongly predispose a person to one viewpoint of cause and treatment over another. And, while such a person might indeed be a dedicated, caring therapist or nutritionist and very sympathetic with their clients, it could also be that they share only their personal perspective on cause and treatment. And, I'd certainly want to know that they had no lingering illness themselves. Sort of a case of "full disclosure".

a late dinner is calling...

anne

June 9, 2009 - 5:42pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Anne,
Thank you for all you have shared about your experience. I have a few comments:

"As for 'different approaches work for different people'--Richelle, these were the EXACT WORDS a highly regarded ED nutritionist said to me when I first sought help and asked about evidenced based practice for adolescents. Perhaps in a highly theoretical way this is true, but I needed specific, concrete help in a big hurry--we were in a huge crisis. I needed RESEARCH driven information. I needed phone numbers. I needed a how-to manual. I needed support. And I needed to know specific options. I am certainly smart enough to figure out what is best for my family. When I asked questions (and they were good questions)the answers seemed so vague. And, it left me reeling...was ED treatment really this fuzzy? (FYI, this was back in 2003)"

I completely agree. I understand your comment is in reference to a nutritionist (for whom my comments are even more applicable), but I'd like to speak from my experience as a recent medical school graduate. Unfortunately in my medical training we received one 50 min lecture on eating disorders from a psychiatrist who does not specialize in EDs, were tested on the acid-base/electrolyte and other homeostatic imbalances that can result from vomiting, laxitive abuse and starvation, and perhaps some comments about EDs may have been made during a pediatric lecture. In clinical rotations, I found the same lack of up-to-date knowledge among many practicing doctors and often patient-doctor communication could have been improved. Obviously, we must be taught a vast amount of information and skills in a limited time, however I think this is grossly insufficient given that ~50% of my school's graduates go into primary care. Many people start with their family physician or pediatrician for referrals or if the ED is unknown, it is the doctor's responsibility to notice signs. We do get a lot of additional training in residency, but on the whole, knowledge about EDs and mental illness in general needs to be emphasized and valued more in the medical community. Recovery is "vague" because different things do work for different people, but we should be able to give you a list of options and the most current research just as we might give you statistics for any other illness.

"As a parent, when you first go for help, this dichotomy of approaches should be fully explained. Parents need to be made aware of the differing viewpoints and ALLOWED TO CHOOSE their path of treatment. This didn't happen for me and my family and I think that's a very common experience."

Again, I agree. Unfortunately, for a number of reasons I assume, patients are not informed of the "dichotomy of approaches" for many illnesses. Often, you are not told why we chose one antibiotic over another or are referring you to one specialist over another. Of course, it is impractical to explain the reasoning behind every decision and for decisions that can have a very significant impact, the patient must be informed. I think you bring up very good points, and in my opinion, we need better training on how to create a partnership with patients rather than the traditional doctor-knows-all model. Again, all of my comments come from a medical training perspective.

I also agree with you that professionals need to be aware of their own biases and if they favor one approach over another standard approach the patient should be informed. I think mental health professionals do receive a good deal of training in this area. It has also been discussed a number of times in my training. Disclosure of personal experience with an eating disorder cannot be enforced, just as you are not required to inform your employer, clients, customers, etc of your medical history. Obviously treating eating disorders while not in recovery is an ethical issue. From my limited knowledge, most ED treatment centers require a certain length of recovery for those working in contact with patients. I am sure the other professionals contributing to this thread have more knowledge and experience in this area than I do.

Richelle

June 9, 2009 - 7:40pm
EmpowHER Guest
Anonymous (reply to Anonymous)

It was interesting to hear your experiences as a medical student, Richelle. As a parent, I started out fully expecting the experts to lead the way and know the answers. That didn't entirely happen. I found myself forging my own way.

Unlike other illnesses, anorexia nervosa is one where parents often meet with exclusion or blame...we are in the waiting room while our children have nutrition appointments, doctor appointments, therapist appointments. We can feel very dis-invited and disempowered in our role as parent. It can leave us so in the dark.

I think if I were to ask the 'why' of a particular antibiotic, most doctors would give me a logical answer. The protocol would be standard and published. The 'why' of ED treatment seems a lot less clear and upfront as well as less uniform across care providers.

And, when the bills are what they are (my daughter's illness cost well over $100,000), parents need to have rights--to know what is going on, what services we are getting for our money, and how effective are those services.

anne

June 9, 2009 - 8:04pm
EmpowHER Guest
Anonymous

Hi Richelle,

You raise a very interesting point. Unfortunately, relapse after discharge from inpatient programs seems common. There's more to family-based treatment than refeeding. I think a lot of attention is given to the first phase of Maudsley treatment, perhaps because parental control of nutrition contrasts with other treatments for anorexia nervosa. But weight restoration is only the first of three stages of treatment, and even in the early part of treatment there are psychological factors at play (parents present a united front, there is a non-critical stance toward the ill child, the illness is externalized.) The final two stages of treatment revolve around re-establishing independent eating and getting back on track with healthy adolescent development. Lock and le Grange's Treatment Manual for Anorexia Nervosa and Help Your Teenager Beat an Eating Disorder are the best resources for people who'd like to learn more about family-based treatment, but this article offers a brief overview. http://maudsleyparents.org/whatismaudsley.html

Jane Cawley
http://maudsleyparents.org/

June 9, 2009 - 4:55pm
pixie (reply to Anonymous)

Hi Jane,

Until this blog, I had never personally heard of the "Maudsley Approach." I went to their web site, read through everything, and came away feeling like it all seems pretty vague to me (but that's just me). It was difficult for me to "relate" to what I read because my main eating disorder is bulimia, and I am an adult, not a child. It seems like they don't really say much about the indepth specifics of their entire program. I guess I would have to pay money to learn more about it? Their web site seems like a short summary of their approach to treating adolescents with anorexia (very little is mentioned about bulimia, and for some of us the two go hand in hand).

I think that when I was a teenager (and I did have eating disorders at that time), if my parents forced me to eat food, I would still find ways to purge it. Most of us with bulimia are extremely adept at hiding it from everyone.

I understand that their "Phase I" is to make the child eat like a "normal person." But, what happens when that child goes back out into the world (school, friends' houses, etc.)? How do these parents know for sure that they're not throwing up? There is no way to know if their child is bulimic. The vast majority of bulimics are either of "normal" weight, or even slightly overweight.

Just a thought that came to mind...
Shelley

June 9, 2009 - 5:24pm
EmpowHER Guest
Anonymous

Lydia,

Excellent points you make!

......................................

Richelle,

I don't claim to be an expert on the Maudsley Method, but from what I have read, it's origins began in Great Britain when parents adopted the refeeding approach at home being done by
compassionate nurses in the hospital.

Many parents in different parts of the world simply do not have the money nor the insurance coverage to pay the hefty fees of treatment centers and therapists.

I have read that Maudsley has a very high success rate and most of the children that are treated with Maudsley recover completely.

Fortunately, many of those children do not grow up to being adults who require lifelong therapy nor are they subjected to toxic therapists who tell them that their parents were/are their problem.

Those children did have (and do have) very caring parents!

June 9, 2009 - 4:49pm
EmpowHER Guest
Anonymous

An interesting question to ask would be, "do children who are refed in a hospital or other setting have the same 'cure' rate as those refed by parents at home with the Maudsley method?" If they are, then this would support the hypothesis that eating disorders are caused by a brain diseased triggered by malnourishment. I do not know the specific statistics, but I do know that refeding alone does not 'cure' most people with ED, although it is one of many important components for healing. Perhaps the Maudsley method of refeeding indirectly reteaches parents and child something about boundaries and/or some of the many other inter-relational skills that perhaps contribute to the development and maintainence of EDs.

The questions about ED etiology and treatment suggested by all who have posed are intriguing. As with addiction, depression and other multi-factorial mental/brain illnesses we may never have an evidence-based "best" treatment. Different approaches work for different people. But the more we know, the better able we will be to identify the cause(s) of a particular individuals ED and offer the most appropriate treatment. This discussion has certainly encouraged me to keep reading, researching, and an open-mind when it comes to treating patients and continuing with my own recovery process.

Richelle

June 9, 2009 - 4:31pm
pixie (reply to Anonymous)

Thank you Richelle! Very, very well said, especially "different approaches work for different people."

There are many different strong and emotional opinions when it comes to eating disorders (treatments, causes, etc.), especially when it involves a young person who is still dependent on their parents. Understandably, people are very passionate about this topic, especially the parents who are so desperate to help their sick child, who can die from their illness!

I completely understand that parents who have used a specific treatment that "worked" for their child would initially tend to feel that "their way" is "the only right way." It's what has saved their child's life, to this point! I'm sure I would feel exactly the same way if I'd encountered what these parents have been through!!! These parents have been through hell (a hell I cannot imagine!), and they most definitely mean well in stating their thoughts and opinions. They are only trying to help others, by sharing their stories of what worked for them.

I do, however, think it's so important to always keep an open mind. Not everyone of us are the same. Some of us have used different approaches that have worked for us. It does not mean "our way" is superior to what worked for these parents; it's only what worked for us and may also work for someone else (just like "their way" worked for them).

Personally, I believe that eating disorders are a "reaction" to certain stresses in life (no matter what age - everyone has stresses in their lives, even young people!). As a woman who has suffered from eating disorders for decades, I know what has worked for me. And I believe that I've had eating disorders for so many, many years that I need to be prepared for it to rear it's ugly head at any time. I must be prepared for this, so that if/when it happens, I'll recognize it for what it is, and not allow it to get out of control again.

Unfortunately, my own eating disorders began at age 12 and my parents did not recognize it for what it was (in the mid-70's). Now, as a grown woman and a parent myself, I've lived independently on my own since I was 18, I am fully responsible for myself and my own emotional/physical health and well-being.

What works for me? I've been seeing the same counselor/therapist every week for the past 4 years. She is herself a recovering anorexic (she's 54 now, but was hospitalized at age 13 in a communist country). She understands exactly what I go through in my life (I've been a single parent for 15 years, she was a single parent for 14 years). Sometimes, it's as if we've lived the same life! She's not only my counselor, she is my friend, my advocate, my no. 1 cheerleader!

Along with my wonderful, special counselor, I have an awesome family doctor (same dr. for over 14 years - who is not only open minded, but always well read and up to date on current treatment options, for everything), a great nutritionist who specifically treats eating disorders (also a recovering anorexic herself), and a psychiatrist who treats eating disorders and addictions (she used to teach at two well known medical schools).

Still, even with all the wonderful support I've managed to round up, I must always be aware of who I am, and that I could "react" to life's stresses by acting out in my eating disorders at any time. It's the way my brain was programmed for over 30 years. Through lots of hard work over the years, I know exactly who I am today.

I believe in not only being open-minded about eating disorder treatment options, but also researching and learning about it in every way I possibly can. Knowledge is power!

Peace to You All!!!
Shelley

June 9, 2009 - 5:13pm
Lydia

Let’s take a hard look at your hypothesis for this article:
“I have concluded that there is one outstanding theme that runs through every person with an eating disorder whom I have encountered….people with eating disorders have experienced, on a sustained basis, relentless boundary invasion on every level.”

Allow me to draw your attention to some very interesting developments in the realm of legal psychology. ‘Research on memory fallibility is now front and center, in the context of police investigations and jury verdicts. …Although juries and decision-makers place great reliance on eyewitness identification, they are often unaware of the danger of false memories.’

“Several studies have been conducted on human memory and on subjects’ propensity to remember erroneously events and details that did not occur. Elizabeth Loftus performed experiments in the mid-seventies demonstrating the effect of a third party’s introducing false facts into memory.” This study clearly demonstrated…”The introduction of false cues altered participants’ memories.” …”Courts, lawyers and police officers are now aware of the ability of third parties to introduce false memories to witnesses.”

“So what is an "original memory?"6 The process of interpretation occurs at the very formation of memory—thus introducing distortion from the beginning.”… “Every act of telling and retelling is tailored to a particular listener; …The act of telling a story adds another layer of distortion, which in turn affects the underlying memory of the event. This is why a fish story, which grows with each retelling, can eventually lead the teller to believe it.”

“Experiments conducted by Barbara Tversky and Elizabeth Marsh corroborate the vulnerability of human memory to bias.” Their research showed that “Memory is affected by retelling, and we rarely tell a story in a neutral fashion. By tailoring our stories to our listeners, our bias distorts the very formation of memory—even without the introduction of misinformation by a third party."
I’ve quoted liberally from this article: http://agora.stanford.edu/sjls/Issue%20One/fisher&tversky.htm

Your hypothesis is built on anecdotal experience, patients telling you what you expect to hear. The longer you base your practice on the assumption that “boundary invasion” is the key to understanding eating disorders, the greater the likelihood you’ll miss all evidence to the contrary. Of all people, I would expect you to understand how easily a therapist can influence a patient’s perceptions of their own past.

When we believe every problem is a nail, we never learn how to use anything but a hammer.

June 9, 2009 - 3:49pm
EmpowHER Guest
Anonymous

May I ask why your article constantly refers to the afflicted person as a "she" or a "her"? Is there a reason why you are being gender specific? Do males afflicted by these terrible diseases mean too little to even acknowledge? You do realise that as an "expert" with this style of writing you are contributing to a large proportion of silent males who are afraid to voice their problems?

June 9, 2009 - 3:23pm
EmpowHER Guest
Anonymous

Amy, there is no data to support the point of view put forth by Joanna.

Perhaps something from the 19th century but certainly nothing from THIS century.

June 9, 2009 - 3:11pm
EmpowHER Guest
Anonymous

I have read through these posts and may be missing something but I am still waiting to see the data that backs up the premise/title of this article. I find it unfortunate that an article like this would be thrown out there without the appropriate data to back it.
-Amy

June 9, 2009 - 2:33pm
EmpowHER Guest
Anonymous

I am an ED sufferer myself, and am currently 28, having an EDs on and off (mostly on) for the past decade or so. I went to several psychotherapists, and may have even read this article when it was first published. I spent years looking for what might have "caused" my eating disorder. My mom and I were enmeshed. She was too dependent on me. Or maybe my dad wasn't involved enough. My brother had learning disabilities- did I feel the pressure to be everything to my family?

Maybe. Maybe not.

It was only when I started seeing a therapist who had me stop looking for the cause and start normalizing my eating that I began to make any progress. What I learned about family pathology was this: every family has it. If you spend enough time in therapy, sifting through enough memories and interpreting and re-interpreting enough scenarios, you will find boundary violations, you will find enmeshment, you will find that "emotions weren't always expressed freely." I've never met anyone who could emote freely, and most of them never had EDs. Now that I'm in recovery (not without lots of slips and bumps), I find that my family is probably less pathological than many. My parents could NOT have caused my eating disorder. Period. Full stop.

When you say "causation," there has to be a long line of epidemiological research to verify this fact. When we say cigarette smoking can cause cancer, we know the cellular mechanisms by which this happens--the components of the cigarettes that bind to the DNA and cause mutations, and which mutated genes can go on and spur unrestricted cell growth. Ta-da! Cancer. We don't know that with EDs. We do know that about 75% of your risk is GENETIC. We do know that dieting and/or malnutrition likely TRIGGER the eating disorder. Genes and environment, culture and chemistry, all combine in eating disorders and in every other illness out there. You can't separate nature and nurture. So to say that "boundary violations" cause eating disorders is a gross overstatement and not in line with the latest research. No, we don't know precisely what causes eating disorders but we do know that it's a hell of a lot more biology and a lot less parents/culture/something nebulous called "boundaries." EVERYONE has had boundary violations. EVERYONE has seen skinny models. Yet only a few develop eating disorders.

Carrie
www.edbites.com

June 9, 2009 - 2:29pm
EmpowHER Guest
Anonymous

Our 18 year old daughter has been fully recovered from her triggered eating disorder predisposition for over a year. She was very ill for several months and close to death at one point. We knew we couldn't have 'caused' the ed (diagnosis EDNOS)....we nor she fit any of the 'traditional' profiles for eds....but we were the dutiful parents of a child w/an ed, so we tried hard to find/figure out what was wrong with our family/us as parents ($$$) that could have caused our incredibly healthy, wonderful, happy daughter to make such a devastating 'choice'. FINALLY, we learned about the Maudsley Method and read current research.

We successfully re-fed our daughter at home in a very short period of time, and she has remained healthy since. She understands that she has a biological (genetic) predisposition to triggering an ed if she should become malnourished, and she takes full responsibility (as is age appropriate) for keeping herself fully nourished.

In hindsight, it is easy to see/understand how our daughter became inadvertantly malnourished during a late teen growth spurt which accompanied a typically busy teen schedule and an extended period of physical exertion through normal extracurricular activities. Once malnourished (which, by the way, isn't necessarily accompanied w/immediate weight loss), with the (unknown) predisposition for an ed, she crashed. A beautiful life went spinning out of control.

I want to encourage any parents reading this 'discussion' that your child can fully recover from an eating disorder with full nutrition, supervision (to ensure what goes in, stays in), rest and adequate time (and perhaps counseling) for the brain to heal. Full recovery isn't only possible, it is highly probable with your immediate nutritional intervention.

I remember wondering if my husband and I would have to be responsible for feeding our daughter forever. No. With full nutrition and stabilized healthy body weight, the brain heals. With that healing and cognitive maturity (which isn't fully realized until the mid 20s), our loved ones are not only able to take responsibility for their self care, they want to.

That was our familiy's experience with an ed, and I have learned that our experience is not unusual.

Moms and dads, it's not your 'fault'; our genes are our genes. Read, research, pray.....and nourish. Lose the guilt and get back to the table with your child asap.

I appreciate this 'discussion' and the opportunity to offer hope to parents/caregivers of triggered ed children/loved ones. Thank you.

June 9, 2009 - 2:11pm
EmpowHER Guest
Anonymous

A few years back, an article appeared in The Boston Globe.

Title: The ancestry of anorexia: Blame Biology, Not Parenting

http://www.boston.com/yourlife/health/mental/articles/2003/12/30/the_anc...

A "must read" for all ED specialists, parents/loved ones and sufferers.

June 9, 2009 - 2:09pm
EmpowHER Guest
Anonymous

I’ve been thinking about this ‘boundary’ issue. Between parent and child (or teen), the term ‘boundaries’ has a somewhat different connotation than it would between a therapist/patient.

Ideally, a parent needs to set, teach and model appropriate boundaries for their children in all areas of life--behavioral, verbal, physical, social, etc.

When a child ‘crosses a boundary’, the parent corrects the child in order to keep them safe, to teach them how to take care of themselves and how to negotiate and get along in life. Boundary ‘limits’ are set by parents dependent on the child’s age and developmental stage.

If you’ve a child, teen or even young adult that happens to show signs of a mental illness (an ED in the instance we’ve been talking about), what happens to boundaries? Do you perhaps violate a child’s boundaries by reading their diary if you fear they are self-harming, suicidal or abusing a substance? How do you handle issues around eating? Do you insist (lovingly) upon proper eating and full nutrition no matter what you see/hear from the child? Or, do you view it a ‘choice’ the child must make to eat—when, what, how much and even IF? In the case of a mentally healthy young person, there is room for flexibility, but even then parents typically give ‘controlled choices’ (boundaries/limits) within which children may make decisions. You may chose what you’d like to wear to school, but the ‘boundary’ is that it must be appropriate to the weather and appropriate to the school’s dress code. You may serve yourself what you’d like at dinner, but you must join the family for meals and must choose from among a variety of food groups. When a child/adolescent/teen becomes ill with an eating disorder, they regress both emotionally and physically. If depressed (and this is common) making even small decisions becomes very difficult and anxiety provoking.

At times (and this is a term I’ve heard somewhere, but maybe not in relation to parent/child relationships), you—as a responsible, loving parent--must cross boundaries. This is really different than an egregious violation such as verbal, physical or sexual abuse. Crossing boundaries is not necessarily a bad thing; in fact, in certain instances I would argue that it is absolutely crucial to the health and well being of an ill family member. If that member is incapable of setting their own boundaries and, as a result, is not taking care of themselves properly, is incapable of making decisions in their own best interest, and is held hostage by an illness (not eating, making themselves sick by purging, etc.), then crossing a boundary is the loving, right and ethical thing to do until that person is once again well enough to take on the job for themselves.

I don’t condone reading someone else’s diary. A confession here: I have done it once, at a time when my child began to withdraw socially from friends and family, when she began actively self-harming and starving and when she began making suicidal statements. Normally, this is not something I would ever do. I haven’t done it since (and there is no need, as she is doing much better). At the time, I was desperate for a better understanding of her mind. In reality, however, reading a few pages in her diary did not tell much more than I already knew with my own (disbelieving) eyes. The fact that she left her diary open, all over the house, seemed to me a not too subtle call for help in it’s own way. Did I feel good about it? No. Would I do it ever again? I can’t answer that. Each situation is so unique and presents it’s own ethical dilemma.

The closest I can come is to say that, inside me, I feel the difference between violating someone on a ‘sustained basis on every level’ and the real and urgent need to ‘cross boundaries’ for reasons of safety and health. Parents and family members need to be supported in doing this, and to do it both well and ethically. They also need to relinquish this just as soon as it is safe to do so.

anne

June 9, 2009 - 12:55pm
EmpowHER Guest
Anonymous

It is my unfortunate experience in working with many therapists over the years - that many who were educated in the 60's and 70's do not keep up with the latest research.

Not to keep up with the latest research does a great disservice to clients who put their trust in the professionals and deserve/need the best treatment that they can get.

June 9, 2009 - 12:23pm
EmpowHER Guest
Anonymous

REVIEW ON PUBMED:
Brown L.
Northside Clinic, Greenwich, New South Wales, Australia.

OBJECTIVE: The aim of the present paper is to review the available literature on abusive experiences and the development of eating disorders, with particular reference to the theoretical basis of the possible links between them. METHOD: The review covers the literature of both interpersonal violence and eating disorders, with special reference to that linking the two fields. Brief case reports and clinical experience from a specialised eating disorders unit are also described. RESULTS: Despite much theoretical speculation of a causal relation between abuse and eating dysfunction there is a lack of empirical research to confirm such theories, and a dearth of treatment suggestions to deal with the comorbid problems of the patient with an eating disorder and a history of abuse. CONCLUSIONS: There is a need for more clinical and experimental focus in this area, particularly in the study of aetiology and the management of dually affected individuals.

PMID: 9140625

If you wish to visit Pub-Med and do a search on this topic you can, what you will find is in all the reviews what you will see is lots of theories and no evidence to back it up. The rates of abuse and ED are in-line with the rates of abuse and non-ED sufferers. Thus it is totally unfair to think that all ED sufferers have suffered some form of abuse.

June 9, 2009 - 11:38am
EmpowHER Guest
Anonymous (reply to Anonymous)

As I re-read my own words above it strikes me that ED sufferers have and are suffering abuse, not from external sources (as many of them may perceive it) but from within the walls of their disorders. They are convinced they are, fat, ugly, unlovable, unworthy in every way as it tries to destroy them in every way. It puts walls between them and those most able to love and nourish them back to health. A very smart move for a disorder that wishes to kill them!

June 9, 2009 - 12:02pm
EmpowHER Guest
Anonymous

This topic has clearly facilitated intense emotions on both sides. Typically when there is conflict and intensity there is passion. The one thing to keep in mind is that nobody knows exactly what CAUSES eating disorders. However, research clearly is indicating that genetics/biology/things out of our control and out of the control and influence of parents do play a significant role. Something that I hope that we all, as clinicians, dietitians, providers, parents, family members, loved ones, etc. will keep in mind and close to our hearts and lips is that PARENTS DO NOT CAUSE EATING DISORDERS! Parents however need to be apart of treatment and the solution. As a previous post indicated, passing judgment & blame only pushes the patient and family away at a time when they are needed. The responsible thing to do is utilize available resources such as those provided at http://www.feast-ed.org to learn about current research, resources, treatment and support. SBM

June 9, 2009 - 9:59am
EmpowHER Guest
Anonymous (reply to Anonymous)

Hear, Hear!
MS

June 9, 2009 - 12:04pm
EmpowHER Guest
Anonymous

The view that interpersonal interactions within the family cause eating disorders was widely accepted in the 1970s and 1980s when Ms. Poppink was educated, but has been discredited in the modern era. For example, the official position of the American Psychiatric Association is that "It is essential that the clinician avoid articulating theories that imply blame or permit family members to blame one another or themselves for the patient's disorder. No evidence exists to prove that families cause eating disorders."
http://www.psychiatryonline.com/content.aspx?aID=138866
In addition, the National Eating Disorders Association has issued a press release saying "Misstatements and ignorance claiming that families cause eating disorders is like blaming parents for diabetes or asthma or cancer." http://www.nationaleatingdisorders.org/p.asp?WebPage_ID=918 The fact is that nobody, including the leading experts in the world, know what causes anorexia, bulimia, or other clinical eating disorders. Further, nothing is gained by speculating about cause. And much needless suffering has resulted from trying to uncover some hidden cause. When our family let go of the search for cause we were able to turn our energy instead to helping our daughter recover. We emphasized full nutrition and refeeding above all else. Today she is fully recovered from her bout of anorexia and as a family we are all back to where we were before the illness struck. The lesson for us was that, like other illnesses where cause is unknown, focus on the cure, not the cause. That's what I like about www.feast-ed.org and www.maudsleyparents.org

June 9, 2009 - 9:37am
Bob J.

Dear Hannah,

While I still come from the "there are many possible reasons for an ED" position, and feel that assigning cause to parents in many circumstances is inappropriate, I have certainly heard others relate the same themes that you mention. When you think about the nature of these sorts of inconsistent and shifting ownership issues , it is no surprise that one of the more common things you hear younger people with EDs say is...."It's the only thing I have that is really mine."

And with caring thoughts your way for the trust and worthiness issues that can come with therapy and reaching out. EDs are so often about being hard on one's self, it seems.

Bob J.

June 9, 2009 - 9:17am
EmpowHER Guest
Anonymous

Dear ja,

While I wouldn't hold my mother responsible for my illness, I can assure you that some children (I, for instance) find it very disconcerting to have nothing to themselves whatsoever – especially when it's been acknowledged that it would be private and then suddenly this changes upon a whim.
What's also kind of disturbing is when your boundaries aren't respected, but you have to respect everyone else's and when any transgression is met with erratic consequences. It was never 'If you do X, Y happens', but I always knew that were I to do X, something would happen, sometimes appropriate, sometimes not. The same goes for agreements on how long I could stay out, etc. that suddenly weren't valid anymore – without any prior notice. I never needed to test my boundaries, it was already being done for me, believe me.
All it taught me was to be very, very careful around people and not to trust them or depend on them too far – nothing I would see as a cause for my disorder, but something which isn't exactly helpful if you want to recover. I still expect to be turned down, rejected, shouted at in therapy for 'not feeling so well' or to be dismissed without any rhyme or reason to it.
I am sure my mum loved me and still does, I also know she never saw herself as this person and she used to outright refuse to even consider it, but that doesn't make it any less the case. I am glad to say, though, that her emotional well-being and our relationship improved a lot when she decided to start therapy and learn to cope with the, frankly, … shit hand she's been dealt in life.
Do parents willingly 'cause' an ED? No. Can they unwittingly contribute to it? Maybe so. Can they sometimes make it incredibly difficult for their children to recover or to develop enough resiliency to not succumb to it in the first place? Yes! And still, that doesn't mean they are to blame. It does mean, though, that everyone will have to be open and trusting enough to revisit all the old dynamics that have become so normal to all the involved.
So, I think we would have to agree to disagree. :-)

The 26-year-old woman from page 1, a.k.a. Hannah

June 9, 2009 - 1:04am
EmpowHER Guest
Anonymous

"When others deny her privacy, read her diary, borrow or take her things without permission, or use their ideas or goals or personalities to overwhelm her efforts in school or sports, that is a violation of her boundaries.

When others disregard or disdain her choices or deny her any control over her personal life, clothes, food, friends, and activities, they are invading her boundaries."

Seriously? These examples are hardly abusive or extreme. Honestly, it's insulting to suggest that reading your kid's diary is a serious "boundary violation" that is going to damage her psyche. My mother did things that were MUCH worse. And what's wrong with exerting some "control" over your kid? That's what parents are supposed to do.

Have you ever taken an anthropology class? That is one problem I have with people in the mental health profession. They are sometimes clueless about different cultures and beliefs.

I strongly believe that ABUSIVE parents CAN trigger eating disorders. However, I don't believe that parents can cause eating disorders simply by being too "controlling", whatever that's supposed to mean.

ja

June 8, 2009 - 8:39pm
EmpowHER Guest
Anonymous

Jane,

Thank you for the link to the Nurture research program at UNC. This kind of research is very encouraging. So many of us parents are struggling to know how to raise our children with healthy attitudes about food, weight and body image when we had very poor role models ourselves.

A couple of books that I've found helpful in this area are "you'd be so pretty if..." by Dara Chadwick and "Outsmarting the Mother-Daughter Food Trap: How to Free Yourself from Dieting -- and Pass On a Healthier Legacy to Your Daughter."

Thanks again,
Carol

June 8, 2009 - 8:03pm
pixie

Dear Anne,

I am so, so, so very sorry for the experience your daughter (and the rest of her family went through)!!!! As a mother, I cannot imagine how you felt. I probably would have wanted to react like you wanted to, and immediately remove my daughter from that situation!!!

While this is not exactly the same thing, I went through a lot with my oldest son, Johnny. He was diagnosed as "speech and language delayed" at age 18 months and went to a special education public school when we were living on Long Island, NY. At the time, I honestly could not see (or accept) that my son was not perfect. I was a new, young and inexperienced mother. My then father-in-law (who was an educator, and was then a school superintendent) told me that I had to listen to the experts, and do what they said regarding Johnny. He kept telling me that "something is just not right" with him. So I stepped out on faith and did. Turns out, after many years of never giving up, that my son had a very difficult form of ADD to diagnose (which was finally diagnosed when he was 8 years old). His school tested him for special education (at my request) and he qualified, based on their formula. Because he tested with a 125 IQ, as his mother I did not feel he would be with his peers if I allowed him to be put in the school's special education program. So, I chose not to put him in it, and instead I hired a special education teacher from another school in our town to tutor him once a week for 2 years. That turned out to be the best thing for my son - not what the "experts" recommended. We, as parents, so often know in our hearts what is best for our children. Thank God, I made the right decision for Johnny. He is now getting ready to enter his sophmore year at a major university (4 hours from home) and is doing AWESOME!!! It's been a long road with my son, but he is so wonderful and will be successful in anything he chooses to do with his life. He is a wonderful young man! I never expected anything from my two boys - other than they always do their best, whatever that "best" may be. When Johnny was struggling in those early years, and bringing home bad grades, I always took them out to a celebration dinner - to celebrate report cards - because I knew he'd done his best!!! :)

I cannot imagine having a child with a life-threatening illness. I greatly sympathize with you!!! I believe when our children go through a life-altering illness or condition, it must be the entire family who stands next to them to help guide them through it!!

Please do not view my post as sad, angry, and full of resentment. Joanna Poppink has helped me and many, many others tremendously. I guess I just feel very protective of her because I've been the recipient of so much of her genuinely caring help and assistance. She has made a tremendous, positve difference in my life and many others, too.

Shelley

June 8, 2009 - 5:15pm
EmpowHER Guest
Anonymous

This note is in response to Shelley's question asking whether I am an expert on eating disorders and the statement I made regarding boundaries. My only expertise in this area is two seriously ill family members, now recovered, work on a mental health unit and an undergraduate degree in social work, master's degree in pediatric occupational therapy. As far as I am aware, there is no specialty degree in eating disorders itself. If there is, I'd be very interested to know that. Joanna, maybe you can answer that?

If you go back again and reread what I said about boundaries, you will see that I never claimed boundaries don't get crossed in my (or any) family. What I said was,

"...Real love is seeing and knowing the boundaries and WHEN to step over them. Because, with eating disorders you MUST step over them, even when it feels uncomfortable and abnormal to do so, even when others are telling you not to--in order to save a life. Its often the only way to pull an ill loved one back from the edge."

When my daughter first became ill, I (like most parents) went straight to the experts. I had total trust. However, I soon realized a number of things. First, I had a difficult time even finding referrals to experts (and I live in a medically reknown city). I did almost all of the work myself, putting together my daughter's team. I also had to dig hard for evidenced-based 'best' practices. I was stunned (that's rather putting it mildly) to be ushered out of most of her doctors/nutritionist/counseling sessions. I felt fairly left in the dark. We are talking about a very ill 14 year old here, not an adult. Gradually, over time--through experience and much reading, I began to realize there were very divergent views on how to treat this illness. How one treated it depended on how one viewed it's basic cause. None of this was stated up front. For so many illnesses, you might be given recommendations and choices (e.g. mastectomy vs. radiation/chemo, etc). But not here. It felt pretty mysterious. And, I felt pretty left out. I couldn't quite imagine this happening had my daughter been stricken with cancer or some other serious illness.

As for genetics, yes this is a moderately heritable illness based on Swedish twin studies. If you've a family history of anorexia, you are 12x more likely to get it than the average joe (or jessica) on the street.

And, I'm well aware I can't be with my daughter every second of her life. No one could. But, in all the years of treatment she has had, she's always vehemently denied any sort of abuse. At some point, I've got to believe that. And, I started believing it long ago.

I totally admit to a mix of feelings when I read a post such as this--upset, anger, sadness, despair. For me, the saddest part was that my daughter started to believe that we, her family, were overprotective, over-involved, over-everything. That we didn't listen to her. That we violated her boundaries. When she was at her most ill, she was told that staff would help her discover why she chosen to stop eating. She was told, "It's your Dad" at one point. Then, "your mom doesn't listen to you".

I was in shock and angry that this would be 'fed' to an ill young person. The very people who had insisted she get help, had trusted the experts, had slepted on her floor for many a long night to keep her safe, had held her through rages, were suddenly now the #1 suspects.

This is not healthy for anyone. Parents need to know there are treatment choices--options--out there. Parents needs to be aware that views can differ greatly. Parents need to think about, interview therapists and sort out for themselves which treatment philosophy best fits their family. To me, the choice is crystal clear as I'm still struggling with the fall out from 'traditional' therapy vs. the newer, family-centered Maudsley approach.

I would hope this thread might give everyone something to think about--the effects of therapists' assumptions ahead of time about families/parents; the widely varying approaches out there today in the treatment of ED's which are confusing for families; the feeling by many (still) that this illness is not about food, but about emotions and that it is emotional work that must be done. I do agree that, in the case of my daughter, she is very socially anxious. Is this a) my fault? b) My husband's? c) Her's? d) None of the above. E) All of the above via genetics? Fault is maybe a bad choice of words. But, I do believe that genetics played a significant role. Children come differently from Day 1. Any parent can, and will, tell you that.

I might end by adding that Maudsley is currently accepted 'best practice' for adolescents with anorexia. It is also being pioneered with bulimia and with young adult anorexics. I am very hopeful for it's success.

anne

June 8, 2009 - 2:27pm
EmpowHER Guest
Anonymous

Hi,

I've been researching how children with eating disordered mothers are impacted. Unfortunately, there is very little research out there, but I did find Dr. Allen Stein at Oxford University who studies how a parent's psychopathology (including bulimia) can negatively impact a child's development. His studies are very compelling, and, he has completed a study testing out an intervention with mothers with EDs who have young children. With success.

My focus is narrow because this is my experience, having been the daughter of a bulimic mother (my sister and I developed eating disorders despite our differing personalities and different biological fathers) but I hope someone can get something out of this.

In my dream world, I would like to see treatment professionals take this into account when assessing EDs. Eating disorders are very complicated and multi-faceted, but I think it's important to look at the whole family, not just the individual.

http://www.neuroscience.ox.ac.uk/pubs/psychiatry-publications/SteinEtAl2006

http://www.neuroscience.ox.ac.uk/pubs/psychiatry-publications/SteinEtAl2...

Maybe someone out there can answer this question - when a parent seeks treatment for an ED, do the treatment professionals assess the impact of the the parent's ED on the children in the home?

Thanks,
Carol

June 8, 2009 - 12:58pm
pixie (reply to Anonymous)

Dear Carol,

I cannot give you a "professional" answer, but I can tell you that my mother was always obsessed with her weight. My entire life, there was always a small piece of paper on the kitchen counter with the calories written down on it that she'd consumed that day. Usually it was 400 or 600 calories per day.

When I began to overeat (compulsive eating) as an adolescent, and I started gaining weight, my parents tried everything they could think of to help me to lose weight. They offered to give me $1 for ever pound I lost. They offered to "buy me a new stereo" if I lost weight. Keep in mind that this was in the mid-70's. Not much was known about eating disorders back then. They were only doing what they thought was best for me, but they were actually causing more harm to me and driving me into full-blown eating disorders. They didn't know any better at the time.

My mother was always around 128 pounds, and she was 5'3" tall. That is "normal!" But she always "felt fat", like she should be "skinny" (I hate that word - skinny). When she looks back at pictures of herself today, during that time, she talks about how "normal" she looked! She says, "I wasn't fat!!!"

Shelley

June 8, 2009 - 4:49pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Hi Carol,
I don't know the answer to your question, but UNC-Chapel Hill has some interesting research going on. The Nurture program is designed to help mothers with histories of eating disorders with their parenting.
http://www.psychiatry.unc.edu/eatingdisorders/research%20eating%20disord...
Jane Cawley

June 8, 2009 - 4:00pm
EmpowHER Guest
Anonymous

Shelley,

I am sorry that you have been battling ED for all these years.

What saddens me more is that you don't believe that you can ever completely recover.

Hopefully, you will completely recovery and along with that full recovery, as so many others have done, let go of the anger and resentment you have toward your parents.

God Bless!

June 8, 2009 - 12:38pm
pixie (reply to Anonymous)

I do not have any anger or resentment towards my parents (who are still married, by the way)!!!!! I am blessed enough to be in the minority of adults who are survivors of incest (and "survivor" I am, no longer a "victim!) - and my relationship with my father has been healed, with lots and lots of work on both sides, over the past 14 years! My sexual abuse is no longer a secret in my family. Everyone knows and it's discussed; it's out in the open and talked about. Thank God there are no more secrets in my family.

Because of the hard work we've done as a family, I now have the father I always deserved. My dad has done everything he can possibly think of to "make up" for what he did to me as a child. Of course, he can never un-do what he did, but he loves me greatly (as I do him), and there is nothing he would not do for me - he would give his life for me in a second, without a single thought! Just like a father who loves his daughter should.

My family was only able to get to this point through tremendous forgiveness on my part (and the rest of my family), and "communication!" I believe that is a big key: Communication, lots and lots of open, non-judgmental communication.

My father happens to be an alcoholic, and the day my mother confronted him about molesting me as a child (22 years later), he stopped drinking and has never drank any alcohol since that day.

I have been in counseling/therapy for most of the past 17 years. I've had many counselors who also suffered with eating disorders. It is like an addiction for me. It is something that I know without a doubt that I will always have to keep in check. Maybe it's because, for me, it started at age 12 and still occasionally rears it's ugly head at age 46? That's a very long time...

It does not matter why it will always be something that I will need to be aware of and keep in check. I have many other emotional and psychological issues in addition to the bulimia (I'm also a recovering alcoholic). For me, it's another "addiction." I'm heavily involved in recovery work with my AA group and I spend a lot of time helping others in their recovery.

If I came across to anyone as having "anger and resentment" I was completely misunderstood. Unfortunately, it's sometimes difficult to write out words to be taken in the way we mean for them to be taken.

God Bless all of You!!! :)
Shelley

June 8, 2009 - 4:42pm
EmpowHER Guest
Anonymous

Kristine,

Right on!

June 8, 2009 - 12:25pm
EmpowHER Guest
Anonymous

Shelley,

Yes, the title is "The Number One Reason . . .", which doesn't necessarily mean she believes it is the only reason. But then Joanna says "I have concluded that there is one outstanding theme that runs through EVERY PERSON with an eating disorder whom I have encountered. Early in their lives, people with eating disorders have experienced, on a sustained basis, relentless boundary invasion on EVERY level."

It doesn't get much clearer than that. EVERY PERSON with an ED that she has encountered has reported this total invasion or neglect. If she doesn't mean that it is the only reason for manifesting ED, then she should say so, otherwise how are we to understand her position? It would appear that she thinks it so for at least the vast majority of cases. If anyone knows of any well-researched studies indicating that total boundary invasion or neglect are involved in a major way in the etiology of EDs, I'd love to hear about them. Ideally, the invasions/neglect would involve as much outside verification as possible, since ED sufferers have such disordered perceptions, especially involving those who are trying to help them.

There are plenty of people well along in their recoveries from EDs, or who are recovered, who will report that they had very normal childhoods, without total invasion or neglect.

Kristine

June 8, 2009 - 11:53am
pixie

I was referring to the first responder to Joanna's blog, the initial ranting post.

Joanna is not saying that "all" parents caused their children's EDs by crossing boundaries, neglect, etc. The title of this blog is "The Number One Reason for Developing Eating Disorders." It's not the "only" reason. There are many different reasons.

Lots of parents think they have a wonderful home for the children to be raised. My mother genuinely thought so, too. However, she did not know that my father molested me at age 11 - I kept it completely hidden, "a secret" from her (I told her when I was grown). That was a serious boundary that was crossed - and my mother did not know! She was an excellent mother!

And like I said before, we never know what happens to our kids when they are not with us. Anything can happen to anyone, at anytime.

I'm so glad your daughter was able to get well! In all my years of studying, exploring and reading about the causes and treatments of eating disorders, I have not read about a reason for an eating disorder to be a "brain disorder." Your daughter having a brain disorder would definitely not fall under the heading of Joanna's blog "The Number One Reason for Developing an Eating Disorder." Actually, when I think about it, eating disorders "are" brain disorders in themselves (they are psychological disorders).

Shelley

p.s. If anyone doesn't want to appear "anonymous" all you have to do is register on this site. Just takes a minute.

June 8, 2009 - 9:59am
EmpowHER Guest
Anonymous (reply to pixie)

For those of you who continue to suffer from ED, you need NOT be subjected to therapists who feed into your 'victim' mentality.

Erin Gates, a recovered anorexia sufferer, talks openly and candidly about her journey through ED and to recovery and a successful life.

http://www.huffingtonpost.com/erin-gates/my-time-inside-a-celeb-re_b_831...

This, too, can be you.

Do not waste your time trying to find 'cause' and placing 'blame'.

Getting the right help early on seems to be the key to successful recovery and a fulfilling life free from ED.

June 18, 2009 - 8:27am
Bob J.

Dear Shelly,

Yours was a particularly thoughtful and moving post. But one thing you said (which I tend to agree with) does seem to bear on some of what people have seemingly been talking about :

"...I believe that every single family has boundaries that get crossed. I am a very, very good mother and yet, I know I've unintentionally crossed boundaries with my children. We, as parents, do the best we can - but we are not perfect. To make a blanket statement that a family has never had boundaries crossed is completely unrealistic. Crossing boundaries does not mean you're a "bad" parent. It just means you're not a perfect parent (no one is)...."

How one could read this is that even normal and regular old "good enough" quality parenting involves boundary violations. Which may be true. I suspect most people would agree with you that even the most healthy parent is not always perfect.

And yet if we want to take this one step further, and apply some of Joanna's contentions, we could theoretically say that things that make up normal healthy parenting are also "The Number One Reason for Developing an Eating Disorder."

I don't know: No one has gone as far as to say that yet, but perhaps that really is what is being said ?

If so, if even good old-fashioned healthy parenting can contribute to the development of an ED, when we take a step back and look at the situation (only a small percentage of kids develop EDs), it would seem obvious that some kind of additional intersecting "Number One Reason" would also have to be in play ?

Anyhow, just some thoughts...

Bob J.

PS, I don't mean to insult Joanna's title. While we may not all be in full agreement with it, it has brought a lot of positions to this discussion, and for that alone it is probably a good one.

June 8, 2009 - 9:52am
EmpowHER Guest
Anonymous

I apologize for leaving my name off my last post (about parents of eating disorder patients being pretty much like everyone else out there). I did not mean to - I've never encountered a blog that did not have identifiers.

I'm sad, very sad, that such a chasm exists between understandings of this illness. That's not good for patients. I am glad to see that the eating disorder world is leaving behind some of the older ideas, just as had to be done with schizophrenia and autism - and ADHD and ulcers. When parents first started to stand up against being blamed and marginalized with those illnesses they were also accused of denial and self-interest.

I hope those who make these assumptions about cause and families will try to imagine what it is to have to fight desperately for a loved one's care and then be told to back off. To be blamed and chided despite the evidence, and to be accused of self-interest or denial when standing up for other parents.

Parents are never perfect (and some parents are truly bad), but when you falsely accuse or undermine parents you don't just hurt them - you hurt patients. I would gladly have taken full responsibility for my daughter's illness, but it wouldn't have helped because that wasn't the cause. She was ill because she had a brain disorder. She is well now because we treated her brain disorder with food and love and time and clinicians who believed in our whole family. Families deserve clinical support based in well-grounded understanding of the illness, good research, optimism, and human kindness.

Laura Collins
F.E.A.S.T.
www.FEAST-ED.org

June 8, 2009 - 9:13am
EmpowHER Guest
Anonymous

Shelley,
I am glad you are getting help for your EDs, and am sorry that you have had to suffer from such illnesses.

I'm not sure which mom you are talking about in your post, but i want to reply to you. You state "I think the issue isn't WHY your daughter became anorexic - it's HOW you can get her the best help." The blog post by Joanna explores her perception of the WHY, and that was what we are responding to. Joanna states that "Early in their lives, people with eating disorders have experienced, on a sustained basis, relentless boundary invasion on every level." This is very different from acknowledging that all children have their boundaries crossed sometimes by their parents, which is what you said. I agree with you. I don't agree with Joanna that all ED sufferers had either constant inappropriate penetration of boundaries OR constant neglect. She says this is a theme that runs through all ED victims.

I, like most other parents of children with EDs I'm sure, have worked hard to make sure my child had the best treatment available. We don't like, however, seeing negative blanket statements about how we treated our children before ED manifested. Joanna doesn't know what went on in our house. And, believe me, it was a nice life. Our very normal college-age son had the same parenting and environment.
Kristine

June 8, 2009 - 9:13am
EmpowHER Guest
Anonymous

I am a 46 year old female who has had eating disorders (anorexia, bulimia and compulsive eating) since around age 12. I developed full-blown, out-of-control "restrictive bulimia" at age 44. In my earlier years, I would swing back and forth between starvation and over-eating. My weight has flucuated between 104 pounds, and 204 pounds, at different points in my life. I have sought out professional psychotherapy for most of the past 17 years and have found that what helps me, personally, more than anything else is relaxation hypnosis and EMDR (you can google EMDR to learn more about it). In addition, I taken an anti-anxiety medication (lots of eating disorders are anxiety-driven). I realize that my eating disorders will always be there and it's my responsibility to learn how to control them and keep them in check.

I am a parent, and I believe that every single family has boundaries that get crossed. I am a very, very good mother and yet, I know I've unintentionally crossed boundaries with my children. We, as parents, do the best we can - but we are not perfect. To make a blanket statement that a family has never had boundaries crossed is completely unrealistic. Crossing boundaries does not mean you're a "bad" parent. It just means you're not a perfect parent (no one is). Perfectionism is extremely harmful to everyone involved. And I know a lot of people with eating disorders are perfectionists. Because of extensive psychotherapy, I now consider myself a "reformed perfectionist." I cannot be a perfectionist and be emotionally healthy.

An eating disorder is a psychological disorder - and it has absolutely nothing to do with food. Food is not the issue. Not feeling in control of one's own life is the issue. I do not believe it is genetic. I believe it is most definitely environmental. It could be caused by the pressure of strong feelings of family expectations, peer pressure, a reaction to abuse (especially sexual abuse) - which is the ultimate crossing of boundaries, or yes, even boundary issues within families.

Joanna has a wonderful web site concerning eating disorders. She has helped hundreds (probably thousands) of individuals suffering from eating disorders. She truly cares about her patients and strives to provide the best possible therapy for them. She has devoted her life to helping people with eating disorders in their recovery.

To the mother who initiated this thread: Are you an expert on eating disorders, like Joanna? I don't think so. To state that boundaries have never been crossed in your family is unrealistic. And what about boundaries that have been crossed in your daughter's life when she's not been with you? Many times, things happen to our children when they are not with us. And many times the child blocks out the incident (as sometimes happens with sexual abuse) and has no memory of it. It's one of our brain's defense mechanisms. I think the issue isn't WHY your daughter became anorexic - it's HOW you can get her the best help. As parents, sometimes we have to listen to the "experts" and do what they tell us, whether we agree with them at the time or not. I've had to do this with my own children over the years for different issues - and I can now look back and see what a positive difference it made in their lives, and that I did the right thing for them, even though I didn't understand it from the expert's point of view at the time. I did the right thing, thank goodness.

To "attack" Joanna the way you did was completely out-of-line and unnecessary. There was no reason why you could not have made your point in a more dignified and respectful manner. You would have come across with more credibility if you had, instead of sounding like someone who is out-of-control, and desperate, themselves. I would suggest you seek counseling for yourself as you go through the process of helping your daughter to get well. You are obviously under a tremendous amount of pressure and emotional stress due to your daughter's illness. You'd be of much more benefit to her if you were emotionally well and stable yourself.

I wish your daughter all the best in her recovery,
Shelley

June 8, 2009 - 8:46am
EmpowHER Guest
Anonymous

Thank you to everyone who has contributed to this thread. The variety of comments, from the personally passionate to the plainly informative, has been extremely valuable to me on a personal and professional level. As a new physician beginning residency, it is helpful to hear the diverse and at times conflicting experiences of those who suffer with EDs and those who are parents or children of those who suffer. Unfortunately, both medical training and our medical system are still greatly lacking when it comes to integrating physical, emotional and spiritual models of disease and treatment. Cooperation among the various professional fields, clinicians and researchers is impeded by inefficiencies, funding, politics, tradition, and much more. Our medical model is also traditionally based on the exclusion of the patient and/or family. No doubt, the public needs to be better educated and informed of their choices. I do hope that the changes we will inevitably need to make in our health care system will serve to increase cooperation at all levels and lead to better understanding and treatment of EDs and other complex mental and/or brain diseases.

Ultimately, the cooperation necessary to make these advances relies to a great degree on our individual abilities and willingness to acknowledge our personal mistakes and responsibilities. It is my personal experience, both suffering with an eating disorder and as the daughter of a mother with an eating disorder, that has led me to arrive at this opinion. I, like some of the others with EDs who have commented, can identify with the "invasion of boundaries" described by Dr. Poppink, however I did not interpret her article as necessarily placing blame on parents. Having fault or having contributed to one's own or another's emotional or physical pain, while almost unbearable to acknowledge, is not necessarily an unwelcome reality. In many cases, it means that there is something over which one has power and responsibility and therefore can change. My mother and father (who was an addict and alcoholic) may have influenced the development of my eating disorder with their inability to provide or model ideal boundaries. However, as we have all learned to be more honest with ourselves and each other, we have also contributed to each other’s recovery and improved relationships within the family. Likewise as a professional, I will need to remain always aware of the biases inherent in my limited experiences and to be quick to recognize that I can never attain complete knowledge of the diseases I treat, even if practicing in a highly specialized field.

By sharing this personal example, I do not dismiss the likelihood of genetic or other biological factors contributing to my eating disorder. Nor do I wish to negate the possibility that "boundary invasion" may play little to no role in the etiology of some eating disorders. Prior to medical school, I worked for a child and adolescent psychiatrist specializing in brain SPECT imaging. I was introduced to Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS), a controversial syndrome characterized by symptoms suggestive of OCD or tic disorder following a streptococcal induced autoimmune reaction affecting the basal ganglia. A rare PANDAS associated form of anorexia nervosa (PANDAS-AN) has also been proposed, in which the resulting obsessive/compulsive symptoms include fears surrounding food and body weight. ( Linda, I am curious if this was the diagnosis for the AN your son suffered following “glandular fever”.) However, research and evidence are still lacking to prove or disprove the validity of PANDAS and an associated PANDAS –AN. The following review articles can provide more information on this topic:

PANDAS anorexia nervosa--endangered, extinct or nonexistent? Puxley F. Midtsund M. Iosif A. Lask B. International Journal of Eating Disorders. 41(1):15-21, 2008 Jan

Pediatric autoimmune neuropsychiatric disorders associated with streptococci (PANDAS): update. Shulman ST. Curr Opin Pediatr. 21(1):127-30, 2009 Feb

I feel fortunate to be beginning my career with the resources and technology that are allowing more information and voices to be shared so readily. The scientific discoveries are also bringing more hope for all affected by EDs and other complicated mental/brain disorders. Perhaps, as suggested by previous comments, we will be able to specifically identify various etiologies for EDs and one day may be able to more precisely individualize treatment and referrals, avoiding the frustration and danger of unnecessarily prolonged misdiagnosis or ineffective treatment. Let's continue this discussion here and elsewhere for the benefit of all.

Richelle Hammond D.O.

June 8, 2009 - 12:13am
Bob J.

Issabella,

I'm with you, in that it would be nice if people added a name to their posts.

Even if they were simply screen-names, it would help keep track of who's opinions belong to who.

The idea that folks seem so opinionated and yet at the same time appear mindfully unwilling to identify themselves feels kind of...unsettling to me, I must admit.

Just my 2c,

Bob J.

June 7, 2009 - 8:19pm
EmpowHER Guest
Anonymous (reply to Bob J.)

Hi Bob J.
I am sorry if my anonymity was unsettling, as I certainly didn't mean for it to be so! I am the "big swing" mom, and I am very new to replying to blogs - have only been doing it for a couple of weeks. I am still trying to figure out the "how to's" and think I am doing pretty well for someone in her 60's. I would like to be able to do what you did - have a screen name appear at the top of my comment, but the way I signed up, it shows the beginning of my email address, which includes my last name. I can't figure out how to change that, but from now on, if I reply again to this blog, I will add the name "Kristine" in my reply.
Kristine

June 8, 2009 - 8:45am
EmpowHER Guest
Anonymous

isabella again.

that is an interesting study - thank you. like many studies of this kind, it contributes a little piece of the puzzle. however, the results do not suggest that sexual abuse is not a risk factor for anorexia; rather, the authors say "we found only equivocal evidence of an association between report of multiple episodes of CSA and the partial syndrome of anorexia nervosa". we may note that the study itself is good-sized; however, the cases of anorexia and bulimia they looked at were only about 60 altogether.

June 7, 2009 - 6:28pm
EmpowHER Guest
Anonymous

Re Isabella Mori's suggestion that Maudsley supporters views should be taken with a grain of salt, I would point out that the views (and shrill tone) of many of the individuals who've posted here may not represent all parents who use family-based treatment. They don't represent me, any more than some organization I've never heard of represents me as a parent of someone with an eating disorder. I hope people won't make assumptions.

I would further add that family-based treatment doesn't suggest any single cause for an eating disorder.

June 7, 2009 - 6:07pm
EmpowHER Guest
Anonymous

This is an interesting good-sized study that looks at childhood sexual abuse and eating disorders.
http://archpedi.ama-assn.org/cgi/content/full/162/3/261
The results suggest that childhood sexual abuse is a risk factor for bulimia, but not for anorexia nervosa.

June 7, 2009 - 5:55pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Thank you for this contribution. I hope others will share related research as well.

I followed the url to the study.

It stated:

Conclusion Childhood sexual abuse seems to be a risk factor for the development of bulimic syndromes, not necessarily mediated by psychiatric morbidity or severe dieting.

Childhood Sexual Abuse and Eating Disorders in Females

Findings From the Victorian Adolescent Health Cohort Study

Lena Sanci, MBBS, PhD, FRACGP; Carolyn Coffey, BSc, Grad Dip Epi; Craig Olsson, PhD; Sophie Reid, PhD; John B. Carlin, PhD; George Patton, MBBS, MD, FRANZCP

Arch Pediatr Adolesc Med. 2008;162(3):261-267.

June 7, 2009 - 6:20pm
EmpowHER Guest
Anonymous

too bad that we can't have names here, it's a bit confusing to reply to "anonymous" when most of us have that name.

so this is isabella mori again. i agree with the last commenter that it would be nice to have some evidence. do you have it, joanna? perhaps from your case notes?

however, it is interesting that the last commenter asserted that ED patients have had horrific childhoods "but only in the same percentage as the general population". i personally haven't seen any evidence of this, either. and if that evidence comes only from maudsley supporters then, with all due respect, i am inclined to take that with a grain of salt.

reading that first the daughter said her parents were horrible and now she says she's had an ideal childhood ... hmmm ... in my experience, many recovered people would not swing that far.

why can't we just say that we don't know (yet) what causes this condition? psychology is such a young science, we really don't know that much yet. and in humans, there is really rarely something that is THE cause. we are infinitely complex, and events interact in ways that are often hard to untangle.

what we DO know, in individual cases, is what seems to work. so why not concentrate on that for now, helping people with eating disorders heal one person at a time ...

June 7, 2009 - 5:49pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Hi! I am the one whose daughter did the big swing from being very angry with us, thinking we were horrible, to an adult who appreciates fully everything we did for her in the past and for our strong relationship today. It has been my experience that people with EDs are a study in extremes. When in the depths of their illness, sufferers lives are completely, extremely different from what they were before manifestation. If they are lucky enough to get the treatment they need, then everything swings completely in the other direction, towards health. My daughter's realization that her previous thinking was totally out of line with reality doesn't seem that far-fetched to me.

June 7, 2009 - 6:35pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Yes, I see similar responses in young girls who get their recovery in residential treatment centers. If they truly get some recovery they are amazed at how off track they were in their illness.

The touching part of this story is that they often have great compassion for others who are still stuck in the disorder.

At such times the recovered person may need help and support so she doesn't devote more energy and time than she can afford in trying to be therapist
(or Maudsely parent) to her friend.

Have you seen this?

Joanna

June 7, 2009 - 6:41pm
EmpowHER Guest
Anonymous

Joanna, your statement indicating that “the number one cause of eating disorders” is either consistent penetration or neglect during childhood of a person’s “physical, emotional, psychological, intellectual, sexual and creative boundaries” is problematic in a number of ways. First, there is no evidence that your statement is true. It would be big news to eating disorder professionals and researchers if it were. Second, by trumpeting this false statement, you perpetuate old stereotypes and lead people astray from the really important new and evidence-based information about eating disorders that could actually help sufferers and their families.

The good news is that in most cases when family-based Maudsley therapy is used, there is full recovery-not the nebulous half-life of being able to function but not at a truly healthy weight and with all the disordered thinking still present. We should all be shouting this from the rooftops instead of spending any time on statements such as yours. And, yes, it is more difficult to treat adult sufferers, precisely because they are independent and in most cases cannot be forced into treatment that their eating disorder doesn’t want. So let’s catch it early, cure it early, when parents are around and are indeed legally obligated to do the heavy lifting when their children are ill.

There is increasing evidence that malnutrition for any reason in genetically predisposed people is what triggers an eating disorder. It was certainly the case with my daughter. She was about to enter puberty, wasn’t happy with her body and decided to “go on a little diet and lose a few pounds” (without telling her parents, of course). She didn’t go through puberty for another 7 years. The current culture’s definition of beauty includes increasingly thinner body types. So more people go on diets, become malnourished, and those who are predisposed to manifesting an ED are at grave risk of getting one.

And, Joanna, I would be very careful about believing everything your adult clients say about their childhoods. ED sufferers are known for their twisted thinking and perceptions. You say that your clients are medically cleared for outpatient therapy and that all eating disorder sufferers are not malnourished. My daughter had outpatient therapy with a BMI of 11. Adults are not going to seek treatment unless they are desperate and unhealthy. And all people with eating disorders are malnourished, unless they are already on the big upswing, have been fully restored to optimal weight, continue to get full, daily nutrition and are in a stage where their recovering brains and thinking are catching up to their well-nourished bodies. My own daughter complained for years about how horrible we treated her and how much she hated us. Now, she will testify to anyone about just what an ideal childhood she had and how my husband and I are the greatest parents ever. I am not saying that some ED patients didn’t have horrific childhoods, but only in the same percentage as the general population.

June 7, 2009 - 4:24pm
pixie (reply to Anonymous)

Your comment "And, Joanna, I would be very careful about believing everything your adult clients say about their childhoods. ED sufferers are known for their twisted thinking and perceptions." is extremely close-minded and made me feel highly offended.

Talk about sterotyping! You are obviously not someone who suffers from any type of eating disorder (you'd be referring to yourself as being "manipulative" and having "twisted thinking").

I can assure you that I am in no way "manipulative" and everything I say about my own childhood is true. God, I hope I'm not "known for [my] twisted thinking."

Good grief. I happen to be honest, clear-headed, intelligent, successful, a great mom, and many, many other positive things. To place such terrible, negative labels on people with eating disorders is a disgrace.

Shelley

June 8, 2009 - 5:53pm
EmpowHER Guest
Anonymous

hi joanna, this is isabella. as you know, i have a lot of respect for your work. i wonder about two things here:

you say that boundary violations is the number one "theme". are you implying that boundary violations are the cause? or was boundary violations simply something that you wanted to focus on for the purpose of this article?

the other thing is that you refer to the person with eating disorders as "she". this goes a bit with what alysiak said. granted, more woman than men have eating disorders but i think the fact that men suffer from them as well needs to be discussed more often. remember when there used to be this idea that only women had experienced childhood sexual abuse? it makes it so hard for men to come to terms with these things when there is an implication that they don't count. i'm sure you didn't want to imply that.

having said all this, i think it's important for all of us parents to look the fact in the eye that sometimes our behaviour, or our lack of doing something, CAN have serious consequences for our children. as you said, it's not a popular thing in parents boards to talk about.

we ALL need to heal. and we all CAN heal. how can we help BOTH parents and their children to do that?

June 7, 2009 - 4:03pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Dear Isabella,

Thank you for your questions. I'm glad for the opportunity to respond.

What clearly comes through in this passionate discussion is the love, fear, anger, agonies and grief of so many parents. I can well imagine the heartache and feeling of helplessness in seeing the most precious person in their lives, a young child, waste away and risk death before their eyes.

I have children in my life and I would do anything necessary, sacrifice anything to keep them out of harm's way.

Finding a way that actually restores health to a child has got to be a glorious feeling that
stirs relief, gratitude, and respect for everyone involved, loyalty to the system that made it possible and incredible appreciation for having their child healthy.

Boundary violation is the topic of this particular article. In my experience as a clinician adults developing the ability to recognize boundaries is an essential theme in eating disorder recovery work.

Knowing what boundaries are, which ones to respect, which ones to negate and which ones to build and honor for their own well being is vital to recovery and healthy functioning in life. In my experience women with eating disorders are unaware of healthy
boundaries. They can’t set them and don’t know how to use boundaries for self protection.

My article is about women. That doesn't mean men don't exist. It simply means that I am writing about women.

At the risk of setting off another controversy let me say that in my experience the few adult men who have consulted with me about an eating disorder present a different clinical picture than women. I don't have enough knowledge or experience to discuss the issues men have to deal with in eating disorder recovery. I refer them, when possible,
to resources that can better serve them than I.

In terms of children, I see young anorexic girls (not in my practice) who are adamant about maintaining their eating disorder and who speak and write from a mind distorted by starvation.

I think most people involved in this discussion know the horrors of the pro anorexia sites where such distorted thinking seems to be rock solid.

And I see young girls come out of residential treatment centers (where they were admitted despite high protest) with a deeper appreciation of health and a generous and loving support for their friends who have gone through the program with them.

Yes, people also report that extreme dieting can trigger an anorexic mind set that propels the person into a sense of power through food deprivation. Perhaps nutritional deprivation stemming from certain illnesses can do the same.

Love, generosity and care coming from wisdom and knowledge compose the foundation of eating disorder recovery. If parents can provide that to their children, I think that's wonderful.

Some parents can't. Some parents are abusive and life threatening. Some parents are neglectful. Some parents are loving and don’t recognize how they neglect a child. Some are too ill or need to focus most of their time on earning a living to support their child. Some parents don't exist, either because they abandoned their children or because they died. Some parents are children themselves and don’t know how to care for a child. I wish all parents loved their children and were willing to provide whatever it takes to help them be well and strong and capable of living a healthy life.

Some children come from healthy and loving homes but meet with harsh and tragic
circumstances in life that can elicit an eating disorder response.

None of the above environmental conditions create a straight line to the development of an eating disorder. I’m not going from cause to effect. Many effects can arise from such conditions. I’m looking at what the adult woman with an eating disorder has to face
and reinterpret so she can develop a sturdy sense of self and become competent as she moves into a healthy life.

Blame is not a recovery issue. Recovery issues are based on what is, now, in the person’s experience. Yes, I listen to what my patients say. I don’t listen as a judge or prosecutor.
I don’t even listen for accuracy. I listen as a psychotherapist, with my mind and my heart, to how my patient sees, feels and understands her own experience. I am always looking for the pathway that will help my patient develop beyond her (and the people I see are women) current limitations and find health.

Yes, there is much we don’t know about eating disorders, both cause and cure. I feel such
joy when a person comes to me for recovery work. I know she usually has to draw
on personal courage to bring herself to treatment. She’s about the enter the unknown and
that can be frightening for someone whose defenses have so much to do with control.

I also have a sense that the people who do NOT seek treatment far outnumber the people who do. The pro anorexia sites have vast followings. Lately I’ve been feeling that the
people who seek treatment are like refugees escaping a harsh totalitarian system.

And please, readers of this discussion do not interpret that last statement as an indictment of parents. The harsh totalitarian system consists of the demands, rules and regulations of the eating disorder itself. An adult woman doing her recovery work is very much like a
revolutionary, rebelling against a system that is intolerable yet requires courage to combat or leave.

Thank you for entering the discussion, Isabella. My hope is that a continual airing of as many issues as possible, with all the passion that may involve, will help all of us
Get a more complete picture of the issues involved in eating disorder recovery.
If we can do that then we have a good chance of being able to work together.

Recovery work is not a one size fits all. The more dimensions we can see the more
compassionate and capable we all will be. I know I’m learning through this discussion.
I hope others are too.

Warm regards and by all means, Isabella, write again if more occurs to you.

Joanna

June 7, 2009 - 5:56pm
EmpowHER Guest
Anonymous

Dear Joanna

I appreciate that as a therapist, and as a caring human being, you want only to do what is best for your patients. That is why I read and re read your column trying to understand your perspective. However, in the end, I came away saddened and disheartened. I am the Mother of a young women who is in recovery from restricting anorexia. Without taking anything away from her bravery and courage in her recovery I can tell you with 100% certainty that what she said when she was in the grips of this terrible disease often bore little resemblance to reality. Her interest and ability to regain her health in order to lead a full and independent life was almost non-existent. You point out that all your patients have been cleared medically for outpatient care and that their perceptions are not altered from malnutrition. I can tell you for my daughter it took many months, and a weight well above the minimum defined as medical stability for her thinking to clear up.

Your premise that children develope anorexia because of abuse, boundary invasions and failure to recognize the child as a unique individual is insulting and without scientific evidence. The fact that children who are abused are more likely to develop mental health issues does not mean that the majority of those who suffer from mental illness have been abused. You assume that the involvement of parents in the well being of their young adult children is evidence for the assumption that these parents were over-involved. I can assure you that I, and most of those I know whose children have suffered from this horrible disease, want nothing more than for our young adult children to be able to lead healthy and independent lives. Parents of adolescents and young adults with cancer, severe heart disease, and other life threatening illnesses also assist their adult children in the search for appropriate medical care. And, like myself, they will step in to assist their adult child if their child starts to relapse. You may call it it invading a boundry--I call it saving a life.

I encourage you to look at the research done at Stanford and the University of Chicago on parental roles in recovery; Dr O'Toole of the Kartini Clinic would also be a good resource for you. There is also a lot of good recent work on the genetics of restricting anorexia.
I do not discount the fact that your patients may, in fact, experience their parents as over involved. Their families probably run the usual gamut of parents who had different levels of capability of dealing with a child or young adult with very unique medical and psychological needs. Most parents I have met would be very open to looking at anything they could do to help create an environment that was healthy for their children; working from that perspective might be much more fruitful than working from a perspective of blame.

Given that your work is with adults and not children and adolescents you may believe that most of what I have to say is not relevant to your patients. You may also be assuming that it comes from a defensiveness on my part. Most research has shown that coming from a close and loving family actually supports, rather than hinders, the ability of adults to function independently and to create their own intimate adult relationships. Your patients, and our children, deserve that opportunity. By vilifying the Mothers as both having initially caused the disorder, and then as having helped to maintain the disorder may be creating a family situation where future positive relationships are difficult. If the worst should happen, and the patient starts to relapse, it could also create a situation where the parents are unable to provide needed assistance leading to tragic results. The statistics for recovery from restricting anorexia using traditional psychotherapy and leaving patients to make their own decisions about food and recovery are grim. Only a slight majority fully recover, between ten and fifteen percent die, and the rest live a half life between sickness and health.

Maudsley treatment and other forms of intensive support which also include the family and emphasize full nutrition (such as the Kartini Clinic) have a much higher recovery rate. I hope you will take the time to learn more about them as well as to study some of the recent work on genetics and eating disorders.

I wish you the best in your important work.

sc

June 7, 2009 - 12:47pm
EmpowHER Guest
Anonymous

"Early in their lives, people with eating disorders have experienced, on a sustained basis, relentless boundary invasion on every level.

When their physical, emotional, psychological, intellectual, sexual, and creative boundaries are consistently ignored and penetrated, people experience total boundary invasion. With no control and no way to end, protest, or, often, even acknowledge such invasions, these persons feel helplessness, despair, and a certainty that they are worthless to themselves or anyone else"

I am sorry, but I would like to know where you base this on? Does this have any evidence based theory. Please enlighten me on where you have developed this theory or model of care.

I am currently living and caring for a child with a significant eating disorder for over a year. According to FBT approach, she will not be a sufferer for her lifetime. Yes, she may need to always monitor her eating in a sense, that she does not lose weight during illness or time of stress. Looking at her development now approximately 16 years, she has not experienced "total boundary invasion" and she would tell you so herself. She is now weight restored and is healing... the key... she is not malnourished, therefore her brain is able to now reason and she is actually telling me how greatful she is to have a mom like me.

The parent blaming game needs to stop. You are hurting people when the average person who may read your article may stick to the old theories of controlig mother etc. No where in your article does it indicate that this is about older women with eating disorders who may never have received proper care.
By the way, FEAST is not only for the few insightful or caring parent...it is for all of us and I am by no means a Superparent! I am just a loving mom who will fight for her child and so glad there is evidence TODAY in the literature for her recovery from a brain disorder. It is not her choice, or her fault. It is not her environment.

June 7, 2009 - 11:15am
EmpowHER Guest
Anonymous

Joanna,
In one of your posts, above, you say that "brain structure physically changes during deep psychotherapy," and you cite to Allan Schore.
I have researched Schore's work and don't see that he has studied anorexia nervosa or other eating disorders. Why, then, cite him as an authority on treating these illnesses? It makes no sense.
Second, assuming that "deep psychotherapy" does in fact change physical brain structure, why assume that it's for the better? How do you know that in the case of anorexia nervosa it doesn't do more harm than good?
How do you know that it's not like going into the brain blindly with a scalpel? If you wanted to change brain structure with a pharmaceutical drug, you would need to prove to FDA that the drug was both safe and effective. If you want to alter someone's brain structure with your brand of psychotherpy, however, you don't need to prove either. Do you inform your patients and their families that you are conducting experiments on them, using untested methods? Have you done peer reviewed long-term outcome studies on your patients and their families?
Informed consent and systematic study of treatment models are standard procedure for the treatment of all other illnesses. Why don't sufferers from eating disorders deserve the same?

June 7, 2009 - 10:53am
EmpowHER Guest
Anonymous

To the 26 year old woman who posted such an articulate and heart felt reply, you are a courageous, wonderful young woman.
Kudos to you!

I sense that some of these therapists rely on making their living by KEEPING women IN therapy for a very long time ... by feeding into the misguided "family is the fault" concept that I hoped had died with the dark ages (but apparently not).

June 7, 2009 - 8:12am
pixie (reply to Anonymous)

I can tell you that Joanna Poppink is definitely not one of those "therapists relying on making their living by KEEPING women IN therapy for a very long time........" I believe that most all therapists go into the field because they want to help people - not because they want to make a lot of money (just like any other profession that helps others).

Joanna maintains a wonderful website devoted to helping those who suffer from eating disorders, and those who love them. She has tons of useful and helpful information on her site that help people world-wide! I know this takes a very big part of her time - and she does not get paid for it.

Her life is devoted to those who suffer, to assist them in any way she can to help them to overcome their eating disorders, and to assist those who love them. I know that she is not "in it for the money." It is her calling in life, and she has decades of experience.

She has personally helped me tremendously, many times over - and I live on the other side of the country from her.

Healing Love and Light,
Shelley

June 9, 2009 - 12:14pm
EmpowHER Guest
Anonymous

I apologize for not having read all the comments, but I would like to add my opinion all the same:

First: As a 26-year-old woman whose onset of an eating disorder lies past her teen years (at 22), I would like to say that I find your explanation as to the cause of the illness somewhat, well, simplified. While I agree that my mother may have invaded my personal boundaries sometimes, and while I agree I found this highly distressful as a child / adolescent, she is still a loving person who cared for me and my siblings as best as she could and without absolving us of any responsibility for our actions (rather the opposite). And let's not forget my father, whose calm and steady advice I could rely upon until the day he died and who actually believed in me. So: My family may not be perfect, but generally I would consider myself as very lucky for having (had) this kind of support system, and I would have to completely disagree if someone tried to tell them that they are in any way to blame for my history of depression, anxiety, self-harm or ED (all of which they aren't aware of, except for the ED, and I intend to keep it that way).

Second, and that is my main point, I find your evaluation of 'girl with an eating disorder's character (for that is what it is, no men, no grown women) highly disturbing. Even though at the end you call them 'courageous', my overall impression is that somehow you see these individuals (and I guess I ought to include myself here) as irresponsible, manipulating, weak and irrational. This, in my opinion, is a very damning assessment and I can only say that, had I had the good luck to end up with you as a therapist, I would not only refuse to apply it to myself, but also therapy altogether.

Yes, I may suffer from depression and ED, yes, there may be pain that I cannot always identify, yes, I may be hard to by around sometimes, but: No, I do not manipulate people into caring for me, I take responsibility for my actions and my life, I've just finished my MA, I'm involved in theatre and charity work, I was a first-year tutor at university, I've spent one-and-ahalf years abroad, I've been in a steady relationship for five years, my friends seem to get along with and I don't impose myself or my whims on them or my family at all times, and except for my mood and my relation to food I would consider myself not out of the ordinary in any way. I certainly do see myself as the helpless and deceptive little girl that you portray. I am a person, with a history, with interests and passions and dislikes and opinions, I am not a vessel that has to be either filled, broken or shattered. I can learn, develop, trust, love and reject, no one has to pick up my pieces, glue them together and paint me hir favourite colours.

Excuse me if this commentary is getting rather long-winded or personal – by no means do I mean to insult you – but I am still furious. I really am. And I would have to agree with Anne: Proper treatment, first and foremost, is FOOD. When I started eating, forced myself not to throw up or starve (and yeah, how I wish I still lived close enough to my family for them to help me through this) and begun taking antidepressants (and isn't it funny they took away the urge to starve or purge for the most part?), I finally found the strength to go through all the applications, etc. for inpatient treatment.

Please don't pigeonhole us into being helpless, damaged children or nasty little (excuse me) bitches. For that is what this article sounded like to me, and I would hate for people to leave with the impression that we're not suffering from a disease (or disorder), but that we as a person are somehow diseased or disordered. I need support in how to get along with the world, in how to live as who I am – I certainly don't need to bend over backwards to become anyone other than who I already am.

Thank you for listening, and I sincerely hope you took no offense.

June 7, 2009 - 7:53am
pixie (reply to Anonymous)

Hi there!

I too suffer from eating disorders, for 34 years now. I do not agree that the issue is "food." I believe eating disorders are psychological disorders and that it's very important to get to the underlying, psychological root cause for them. I believe it's about "control" and "coping," not "food." I believe my eating disorders are a "disease," something that I will always have to be aware of - no different from the alcoholism that I am recovering from. My eating disorders are just another addiction, another form of "acting out" and being "self-destructive," whether consciously or unconsciously.

As for being a "damaged child," well I was. And even though I'm now 46 years old, I am still that same little girl inside that I've always been. That is reality. We are all who we were as children (our inner child). And I was a indeed a very emotionally "damaged" child.

There is nothing "simple" about any eating disorder. All eating disorders are very complicated. If you go to Joanna's site, you'll see that she has many, many articles and lots of diverse information posted there - from every angle, not just her post on this site. I encourage everyone reading this to check out her site and see what she is really all about! Please do not judge her until you do.

Peace and Blessings to All,
Shelley

June 8, 2009 - 5:35pm
EmpowHER Guest
Anonymous

Joanna,

There is so much I would like to address here, but I'll stick to the most important points.

There is no evidence whatsoever that parents of eating disorder patients are better or worse parents than the larger population of parents. None.

Eating disorders are a biologically transmitted brain disorder that distorts self-perception and interpersonal relations. It is perfectly logical that an illness that first manifests in childhood and adolescence would, if allowed to fester through to adulthood, would leave a person with very distorted relationships. To take the self-reports of these adults as proof of cause - instead of as symptoms - is a grave misunderstanding and disservice. To the patient, to his or her family, and to all those who read or hear from you about cause.

The parents of F.E.A.S.T. and those whose children have been offered the Family-Based Maudsley approach are no different than the parents of other patients except that our children are not being treated by clinicians who assume we are pathological. And, presumably, that our children will be spared years of illness because we are empowered to act lovingly and assertively during treatment.

June 7, 2009 - 3:17am
EmpowHER Guest
Anonymous

Hi Joanna,

I wanted to clear up a misconception. You write that Maudsley attracts "families who are sensitive, caring and willing to grow, learn and develop as they learn ways to help their children move to eating disorder recovery. It may be that families who are incapable of cooperating in such an effort are the families that never enroll in these programs or drop out quickly."

The research on Maudsley shows good results. The exclusion criteria were not especially strict (abuse, active suicidality or too ill physically for home treatment.) Further, patients were randomized to treatments--the study families did not choose their cohort. So, it's not a select group of "superparents" we're talking about. (Though I think most parents, whether they use the Maudsley approach or not, love their kids!) Interestingly, single parents did just as well as married parents in a recent study of family-based treatment for bulimia nervosa. This page provides links to the available research on family-based treatment.
http://maudsleyparents.org/clinicians.html

Cheers,
Jane Cawley
http://maudsleyparents.org/

June 6, 2009 - 9:00pm
EmpowHER Guest
Anonymous

Laura Collins and Erica, thank you for your posts.

....

Just curious - a question for Joanna:

Are you a mother?

I would appreciate an answer.

Thanks!

June 6, 2009 - 8:27pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Yes.

June 6, 2009 - 9:11pm
EmpowHER Guest
Anonymous

Joanna,
I am a parent whose daughter developed restrictive-AN beginning at age 9 and who has reached recovery after two years. I understand that you deal with adults, many of whom are not anorexic, but who may have food issues such as bulimia, over-eating, etc. You yourself are a recovered bulimic, to which I say congratulations on the hard work it must have been!

Seeing my young daughter fall into the pit of anorexia after suffering strep throat and then learning of the direct connection between strep and brain diseases such as anorexia, OCD, tics and anxiety, I think I see eating disorders more from the biological side. My daughter is in a loving, very balanced family. Our young son does not suffer from an eating disorder and yet is living in the same family. There are genetic and biological brain changes that are a major part of eating disorders, just as there are for autism and schizophrenia. Do family dynamics trigger an eating disorder? Probably in some cases, yes. But as Bob points out, there really is no one known trigger for eating disorders and how temperament and genetics interact is a key component that needs to be acknowledged. It is complicated, scary, and confounding, but we need to be open to the fact that even the experts do not know the absolute cause of eating disorders. I think having an open mind to all possibilities, without placing blame, is the best place to start helping sufferers recover.

June 6, 2009 - 7:02pm
Bob J.

.

Joanna wrote :

"In your post you refer to a population of families I and other clinicians may never see. It's possible and probable that more exists than what comes through our offices for treatment....for example, [I] only work with adults who are affected by an eating disorder..."

I posted a link to your artical on the Parents board of Something-Fishy, and there is a discussion going there as well.

One of the things I mentioned in that conversation is the possiblity that, just as you have implied, some kind of screening may be at work ( perhaps you present yourself as working with truama issues as well ?) and as a result you may indeed see a high percentage of clients with the very same issues you mention. Heaven knows that such issues do exist, and that just as you contend, childhood family issues are often the cause.

However, as you might expect, these contentions are, in general, not playing very well on the Parents board. But my guess is that some of the same sort of selecton/screening process may be going on there as well. In that parents who may have indeed been detached, cold or neglectful are not likely to be joining Something-Fishy. Nor are they likely to show up here to validate the contentions in your artical.

I know for a fact that people with EDs come from all sorts of various backgrounds, from the horrifically abusive to the concientious and loving. When one agknowedges this range of variation, the role of genetically determined temprament as it plays out in sensitivity/reactivity would seem to be an important one.

What I mean is....I believe there is a valid place for all positions within this discussion.

PS. Bob waves an old-time hello to Laura. :- )

June 6, 2009 - 6:41pm
EmpowHER Guest
Anonymous

Joanna,

In an effort to help another parent with their child's recovery, I once posted these questions seven that every parent should ask a therapist before they give them access to their child:

1. What do you think causes this illness?
2. Did you suffer from anorexia and if so, do you still have anorexic thoughts?
3. What "issues" do you deal with in therapy? Have you found that there are common issues that you deal with in your ED patients?
4. What role do you believe the parent plays in recovery? How would you define recovery?
5. Have you heard of Maudsley? What is your experience with it?
6. Have you looked at Walter Kaye's research on Anorexia and if so, what do you think of it?
7. What books do you recommend to parents? to sufferers?

It was my contention that everything you need to know about whether the therapist would help or harm your child could be discovered if these questions were answered truthfully. I'm curious how you would respond to them.

Cheforexic

June 6, 2009 - 5:40pm
EmpowHER Guest
Anonymous (reply to Anonymous)

"My lifework is dedicated to eating disorder recovery. My own experience with bulimia, long before it had a name, and my recovery journey deeply informs my work with others"
From her personal website:http://www.eatingdisorderrecovery.com/aboutjoanna.html

Telling don't you think?

June 8, 2009 - 1:35pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Cheforexic, thank you so much for that list of questions.

Very good!

It is so important for parents and those who suffer from eating disorders to realize that there are "professionals" who can do them so much more harm than good.

With the questions that you offer, one can at least try to attempt to prevent exposing a loved one or oneself to toxic therapists.

Bravo!

June 6, 2009 - 8:40pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Dear Cheforexic,

Thank you for these questions. I'm sure many people will find them of interest.

My work is with adults. I don't see children in my practice. I have learned that eating disorder recovery is best undertaken with a clinician who specializes in the field.

Working with adolescents and younger children are specialized fields in themselves.

I refer parents who call for treatment for their children to clinicians who have expertise in both adolescents and eating disorders or expertise in both younger children and eating disorders.

If you would like to share how you came to create this list of questions and what effect it has had on others, I welcome your contribution.

best regards,

Joanna

June 6, 2009 - 6:12pm
EmpowHER Guest
Anonymous

I would add that maybe, just maybe the adult patients that you see are so enmeshed with their illness, that they themselves are looking to place blame. Their brains are so twisted by chronic malnutrition, and their clinicians are so willing to accept without question what these patients are telling them. "My mother controlled me. My father molested me." Maybe it is the ed talking, and not the real patient. The real patient is in there, being tortured by ed. The patient who could be helped -- not by being told to "choose" to get better, or to follow 12 steps -- but by being fed, lots of food, consistently, week after week, and supported until his or her brain heals. Who can do this best -- a clinician who sees the patient once a week? Or someone who lives with the patient and truly loves them...

Erica

June 6, 2009 - 4:24pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Dear Erica,

Thank you for contributing.

Please know that the patients I see in a private practice are required to have a medical check before we work together. If anyone is at physical risk because of low weight or suffers from any kind of malfuction because of nutritional deprivation I refer them to in-patient treatment. Private practice is not equipped to work with people at medical risk. Such persons need to receive medical care, ongoing psychological treatment and, as you say, food. They need to be healthy enough to be able to work through the considerable cognitive and emotional challenges they would face in psychotherapy.

Eating disorders cover a broad range of physical experience. Not all eating disorder patients are deprived nutritionally. Not all eating disorder patients are underweight. And certainly, not all eating disorder patients are children. My patients, for example are adults ranging in ages from 26 - 76.

Also, patients rarely, in my clinical experience, accuse their parents of being responsible for their eating disorder. Often parents, spouses, boy friends or girlfriends are afraid that they will be the focus of criticism in private therapy sessions. The fact that the work is confidential allows fantasies to develop in the people who are excluded from the details of the work itself.

Yes, Erica, I agree with you on this point. The symptoms of an eating disorder are not the person. The true identity of the person unfolds and blossoms when she or he is free of the eating disorder and learns to function in the world as a competent and substantial adult.

I appreciate hearing your views. You bring up more of the topic that needs to be included in this discussion.

What is your position in this field, Erica? Are you parent or family member of someone with an eating disorder? Have you suffered from an eating disorder yourself? Is your connection something else?

Please feel free to write again and share some of your story.

best regards,

Joanna

June 6, 2009 - 6:03pm
EmpowHER Guest
Anonymous

I am just appalled at this information provided. Some of these boundary issues may be evident in some cases and maybe reach the attention of professionals because of a range of problems. There were no boundary issues in my now recovered two young adult children. My s had been successfully living away from home for 3 years when he became AN following glandular fever.

Our children were much loved, encouraged, bright and very independant children prior to their illnesses. If you believe what they said WHILST ILL you would think they were emotionally abused. Surely professionals can not trust what this ill malnourished brain is telling them even if the individual seems to believe it at the time. My D received 5 years of wasted traditional treatment whilst we backed off as advised and we watched her decline and attempt suicide.

Thank goodness for Mandometer and Maudsley who work together will loving families towards recovery. When oh when will professionals start working with families rather than adding to everyones trauma by blaming them.

I'd like to see you working with that mother who probably picked up her approach to her D whilst frightened and playing safe for fear of causing further harm. Have you sat there beside your child in intensive care? She needs guidance to provide the support she desperatly wants to give her D not being told she is the problem so go away. It is also often the case that those same behaviours do not trigger ED in children in other families.

It is heathier for everyone to have a loving supportive family whatever their age. Please move past the blaming (inappropiately) and everyone work together to refeed and renourish the individual. Then listen to what their well brain tells you and work with that.
Linda

June 6, 2009 - 4:23pm
EmpowHER Guest
Anonymous

It's also possible that the very pathology that you assume CAUSES the eating disorder actually RESULTS FROM the eating disorder.

I have a son that developed anorexia at age 11. There are no boundary issues in our family (and our therapist would back me up on that statement). We have a healthy, loving home. The anorexia came from a brain disorder, an illness. And it isn't anyone's fault.

We have used Maudsley methods to successfully refeed my son. There are indeed lingering issues that have resulted FROM the anorexia, but they do not predate his illness.

I am heartbroken that fault continues to be perpetuated.

Wendy

June 6, 2009 - 3:50pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Dear Wendy,

You and your family have been through agonizing times. I'm glad to know your son is out of harm's way.

Please tell me, is your comment based solely on my article or are you following the discussion in the comment section?

I ask because the various sharings on this theme have, in my opinion, been expanding perspectives. Eating disorders are painful and disruptive enough.
We don't need or want more heartbreak in patients, parents or, for that matter, treatment providers.

best regards to you,

Joanna

June 6, 2009 - 4:11pm
EmpowHER Guest
Anonymous

Dear Laura,

Thank you for contributing to this valuable discussion. I continue to hope for more perspectives so we all can get a more encompassing picture of these issues.

In your post you refer to a population of families I and other clinicians may never see. It's possible and probable that more exists than what comes through our offices for treatment.

I, for example, only work with adults who are affected by an eating disorder. I do not work with children.

The stories I hear from my patients, and I've been in practice for almost 30 years, include unconscious and often unintended boundary invasions by parents. These invasions force the child to develop ways to defend herself. Some children cannot defend themselves. Others find various methods of defense, one of which is an eating disorder.

By the time some of these children are adults and bring themselves to treatment, defense patterns are established and, usually, the difficulty with parents continues.

It is possible that the adults who come for treatment received enough love and developed enough self respect to reach out for freedom from an eating disorder. It's also possible that these adults come from families who may be intrusive, even to an extreme, but at the same time love and want to support their child.

It's not unusual for me to see an adult because she wants treatment and her mother found me and made that first referral. And it's not unusual for that very same mother to create, as she always has in her parenting, difficulties that trigger and even undermine the recovery work.

This is not done intentionally. The mother is unaware and caught in her own psychological patterns. But, she still wants the best for her now adult child.

Families run the gamut from insensitive people who do not care about their children to caring and loving people who want the best for their children. I could never make one category for all families.

It may be that Maudsley and F.E.A.S.T. attract families who are sensitive, caring and willing to grow, learn and develop as they learn ways to help their children move to eating disorder recovery. It may be that families who are incapable of cooperating in such an effort are the families that never enroll in these programs or drop out quickly.

It’s a challenge for all of us to look at these issues because we don’t have information about or experience with the people we do not see. But to address the vast topic of eating disorder recovery, we need to be open to what and who we don’t know about.

We may be talking about different kinds of families.

I’d be very interested in hearing your response to this, Laura.

Thank you again for writing.

Best regards,

Joanna

June 6, 2009 - 1:34pm
EmpowHER Guest
Anonymous (reply to Anonymous)

I understand that you work only with adult women. But, in your article, you refer frequently to the experiences of the child within the family setting. All of us were children once. So, even though you work only with adults, you speak of childhood and families. That's in part what I heard and am reacting to.

When you hear the life version of the adult person sitting in front of you, it is a one sided remembrance of an experience involving a number of people. For that person, it may be their reality. However, to really understand their history, their background, their family, you would need to have the whole family present.

Think of nations. We wouldn't just get the perspective of only one country in a situation. We'd look at all angles before drawing conclusions. We'd talk, listen to each other, negotiate. You can't get a full picture without this. And, yes, you may treat adults, but they were once children. I don't see how this article which refers to families and children within it--this philosophy of cause-- only applies to your specific treatment population. I think there can be real pitfalls in the kind of therapy that looks backwards to causation.

June 14, 2009 - 7:18am
EmpowHER Guest
Anonymous

"Maybe some day there will be an organization for children of parents with eating disorders"

There is: F.E.A.S.T. (Families Empowered and Supporting Treatment of Eating Disorders) www.FEAST-ED.org.

I am deeply saddened by the assumptions made in this post, and some of the responses. I am grateful to the brave mother who so respectfully outlined the facts. Some day I hope we will all look back and see both the error and the tragic cost in clinicians who assume pathology in families. It is disheartening that practicing clinicians would hold these beliefs, and heartbreaking that parents would absorb them.

Boundaries, it seems to me, apply to clinical assumptions as well.

Laura Collins, Executive Director
F.E.A.S.T.

June 6, 2009 - 12:52pm
EmpowHER Guest
Anonymous

Dear Carol,

I applaud your efforts to continue learning and developing. I appreciate your commitment to be the stopping place in a thread in your family legacy that helps perpetuate eating disorders.

Your own therapy work, your willingness to look at yourself and your family with honesty and love and your dedication in providing your daughter with a healthy emotional environment in which she can develop to be the best she can be is wonderful. And, as I know you appreciate, your effort is necessary and challenging.

When something we know is all we know, we don't know options exist. Plus, those options may be available to us only after we do a certain amount of internal growing. Usually in that growing we have to tolerate pain and experience humility as illusions collapse and more reality becomes clear.

Your efforts to learn, not only to break but change the chain, and use your learning and your love to help your daughter, will help many children and adults beyond the limits of your family.

Thank you for your participation, Carol.

warm regards,

Joanna

June 5, 2009 - 2:18pm
EmpowHER Guest
Anonymous

Joanna-

Obviously this is a very thought and emotion provoking post! As a psychologist who has also worked with eating disorders (and trauma) for over 20 years I found myself nodding as I read along. What I think may be confusing is that not all boundary violations are intentional. Parents are often doing their best, acting with good intentions, perhaps struggling with their own unaddressed childhood issues. The result can be getting out of sync, disconnected and/or overprotective in a way that is harmful. Thank you for illustrating some of the ways this can play out!

I also think the research about anxiety disorders predating the development of eating disorder behaviors can be confusing. What this may overlook is that anxiety often is a reaction to the types of emotional experiences you describe.

Thank you for this thought provoking topic and conversation!

Kathleen Young, Psy.D.
www.drkathleenyoung.com

June 5, 2009 - 10:47am
EmpowHER Guest
Anonymous (reply to Anonymous)

Dear Kathleen,

Thank you for your thoughtful response. I appreciate your sharing your professional experience.

It's agony for a loving parent to see their child ill with any serious illness. To consider that something in the physical or emotional environment may have contributed to that illness may be more than a loving parent can bear.

Yet, to become overprotective could mean that something ignored or about which a person is blind can become even more intensified.

I looked at your website and see that you have a great deal of experience working with people suffering from anxiety, various kinds of abuse and difficult family issues.

Thank you again for adding your voice to this discussion.

best regards,

Joanna

June 5, 2009 - 2:26pm
EmpowHER Guest
Anonymous

Dear Joanna,

The issue of boundaries has certainly struck a nerve! As I said, all that you wrote makes a lot of sense to me and speaks to my experience. I think that parents can be loving AND violate boundaries with their children. In my grandmother's case with my mother, the intrusion on my mother's sense of self was pretty blatant, my mother's boundary issues with me were more subtle and fell on the side of neglect. In both cases, my mother and I suffer, to varying degrees, from an unstable sense of self and feelings of low self worth. I've worked hard in therapy for years and have made progress. My mother, who never sought treatment for her bulima, often seems like an adolescent to me, stuck in the past with her mom. That's not to say she isn't kind, generous and loving, but her disease, which I see as a mental health issue, has compromised her sense of self, self-efficacy, self-esteem and discovery and fulfillment of her dreams and hugely impacted the quality of her relationship with her daughters.

Now that I am raising my own daughter, I've decided the buck stops with me. I'm interested in the prevention side of things, not treatment so much. My concern is helping mothers with bulimia understand that they can, and likely will, negatively impact their own child's development and increase the risk for passing on an eating disorder. I've lived this and talked to other women in similar situations. So, with my daughter, I see her as her own being and my job is to guide her and help her become the person she is meant to be. I work hard to keep my issues to myself, something I wish my mother had done with me, although I do think she tried.

Maybe some day there will be an organization for children of parents with eating disorders like there is for children of alcoholics. There do seem to be many similarities.

It is very striking to me that the mothers who have commented on this article are so offended and rejecting of the whole boundary issue. Perhaps it hits too close to home or perhaps the nature of anorexia is so frightening that something so intangible as boundary issues seems inconsequential and offensive. Parents need to be held accountable but it doesn't mean they are bad people. Families are ocmplicated and relationship patterns get passed down through generations uncommented on and unacknowledged. My sincere hope is that through my work in therapy and by writing about my experiences that I can stop those patterns from poisoning my daughter's life.

Thanks,
Carol

PS A book that was recommended to me as helpful for children of parents with an ED is called "Children of the Self-Absorbed: A Grown Up's Guide to Getting Over Narcissistic Parents" by Nina Brown. I found it helpful.

June 5, 2009 - 9:53am
EmpowHER Guest
Anonymous

As a former anorexia sufferer, I am appalled by this article.

My daughter also suffers from anorexia, which started at the same age as mine did.

True experts tell us that genetics and personality traits are two of the major factors that cause ED.

"Boundary issues"?

I can tell you that I myself never experienced any of the things that you talk about - boundary issues, nor abuse nor sexual molestation.

My parents were very loving, as I was a loving parent to my daughter.

This article does more harm than good to sufferers and their families/loved ones.

This does not surprise, however, since I have encountered many 'misguided' therapists over the years.

I hope the professionals take this author to task on this one.

June 5, 2009 - 1:50am
EmpowHER Guest
Anonymous

I just found this on the Maudsley Parents web site. Although preliminary, this is an encouraging step, so I am passing it on. I am sure there will be more to come.

My daughter is 20 and has anorexia nervosa. So far, counseling hasn't helped. She was too sick and depressed to stay at college so we brought her home. We'd like to try family-based treatment and she says she doesn't want to go to a treatment center. Is she too old for this to work?

Angela Celio Doyle, PhD responds:

There is no clear first-line treatment for adults with anorexia at this point in time. However, there is initial support for the Maudsley approach with college-aged individuals. The National Institute of Mental Health highlights three important components in treatment of adults:

1. weight restoration
2. treating the psychological issues related to the eating disorder
3. reducing or eliminating the behaviors or thoughts that lead to disordered eating, along with relapse prevention

The Maudsley approach for young adults fits these criteria and is based on the premise that parents continue to play a major role in their child’s life even when their child is a young adult; this role might involve emotional support and guidance or it could be financial (i.e., parents pay for college). This situation provides an opportunity for parents to help their child recover, although careful attention needs to be paid to their healthy psychosocial development as an increasingly independent young adults.

In a recent case series at The University of Chicago, a small number of young adults were provided the Maudsley approach with some modifications based on their age. The results were positive, overall, with the majority of the patients recovering and returning to school at short-term follow-up. Additionally, the patients and their families reported positive feelings towards the treatment approach. A paper describing the results of this case series is in the process of being reviewed for publication by the International Journal of Eating Disorders. Because this form of the Maudsley approach is still being developed and refined, your best bet would be to seek out treatment with a trained and experienced Maudsley therapist who would be willing to adapt the treatment to an older individual. Additional research using randomized controlled trials will need to be done to determine whether this approach is the best treatment for young adults, however.

anne

June 4, 2009 - 8:43pm
EmpowHER Guest
Anonymous

To the Daughter of the 70 year old bulimic mother and difficult personality grandmother,

I do feel for you. Please believe that. I also have lived with family members with eating disorders. I also had a strong willed and opinionated grandmother who, as much as I loved and admired her in certain respects, I also found her difficult (and hard for my mother as well). I can relate to much in your post.

I obviously don't know your relatives and am not in a position to make judgments. But let me re-frame this a bit if I might.

Often times I think it can appear that a family may be trying to control a child (an adult one even) or overly involved with a child. It could be easy to assume "boundary violations"(e.g., over-control, over-involvement, over-protection, high expression of emotions or maybe even difficulty expressing one's feelings) caused an individual to develop an eating disorder. But, when a child suffers from an eating disorder, I would suggest that the opposite could also be true. It's the old chicken and egg dilemma. Which came first? Could it be that your loved one develop symptoms of an eating disorder which then brought out strong reactions from her family? Especially long ago at a time when these illnesses were poorly understood and barely treated?

Perhaps your Grandmother's reaction was born out of frustration and anger at her inability to help her daughter or stop the behavior--especially if she viewed the behavior as a 'choice' rather than an illness. Perhaps her own hurt, worry, confusion and anger bubbled over at times. Eating disorders are difficult for everyone, all around. There was (and often still is) shame and guilt associated with eating disorders for both sufferers and families.

I can't know the dynamics in your family. However, it may be that there is more than one angle, one way of looking at it.

anne

June 4, 2009 - 8:28pm
EmpowHER Guest
Anonymous

Family-based therapy (Maudsley) is also used with adolescents suffering from bulimia, not just anorexia nervosa. And, while there is still much to learn about how best to treat chronic eating disorders of long duration in older patients, it is likely that many of those eating disorders started in adolescence or young adulthood. How wonderful it would have been if those behaviors could have been interrupted at an early stage of the illness, instead of becoming chronic. All evidence points to early intervention as leading to better outcomes.

While research on the Maudsley method has been studied in adolescents, I know of people who have successfully used it with older adult children. While perhaps not the norm at this time, it is not impossible.

For bulimia in older patients, the evidenced-based treatment of choice is Cognitive Behavioral therapy and antidepressant medications. I am personally less familiar with this as this was not my family's issue. However, I have done a great deal of reading and research on ED's in general.

Bob, I appreciate your willingness to maintain an open mind an acknowledge that people with ED's come from all sorts of backgrounds. What I found so upsetting in Joanna's column was the 'this is the way it is' for eating disordered patients, as though they were all lumped into one.

Please recall the schizophrenogenic mother of schizophrenia or the refrigerator mothers of autism. No one believes that anymore. Why do eating disorders, a mental illness, deserve the special distinction of being blamed on parenting, on the media or on society?

Dr. Thomas Insel says, and I quote "...Anorexia nervosa, among the most serious of mental disorders, can be deadly for young women who get caught up in a malignant cycle of weight loss and compulsive behaviors. The mortality rate for those with anorexia nervosa is estimated at 5% per decade. Research tells us that anorexia nervosa is a brain disease with severe metabolic effects on the entire body. While the symptoms are behavioral, this illness has a biological core, with genetic components, changes in brain activity, and neural pathways currently under study. Most women with anorexia nervosa recover, usually following intensive psychological and medical care."

He also states:

"How badly we have done by parents by separating individuals from families,
and blaming families for the problem...
We need to ask for a day of atonement for past care,
and we need to bring families into the picture."
Dr. Thomas Insel Director of the US National Institute of Mental Health 2007

There are obviously differing views in the ED treatment world. This is a big part of the problem for families...and ultimately sufferers.

June 4, 2009 - 6:49pm
EmpowHER Guest
Anonymous

I'd just like to say that I think this is a very powerful and interesting thread. Thanks to all of the participants.

June 4, 2009 - 12:34pm
EmpowHER Guest
Anonymous

Dear Daughter of 70 year old mother with chronic bulimia,

Thank you for writing. Over twenty years ago a woman in her mid twenties
asked me if she could find a 12-step program for adult children of parents who had eating disorders, bulimia in particular.

My heart broke at the magnitude of her question. The answer, of course, was "No." At that time in our society her existence was unknown or unacknowledged or both. All people with eating disorders were considered to be female, white and in their very early teens.

An adult child of a bulimic woman, if recognized, would destroy that illusion. The bulimic woman would have to be at least of child bearing age plus the age of her adult child. That would put the bulimic person in the neighborhood of forty. This was inconceivable at the time, except for the people who were living with the illness.

I still receive mail from women in their 50's and 60's who share for the first time that they continue to suffer from an eating disorder.

The Maudsley Method philosophy has a straightline focus on the adolescent living at home and who is severely deprived nutritionally.

The full range of eating disorder healing experiences encompass every aspect of a person's life and is quite profound for the individual and for the people in his or her life if they can remain in relationship. Working with adults who have eating disorders is very different from working with children.

And working with adult children of mothers (or fathers) with a history of eating disorders is still, in my opinion, a neglected area in mental health.

The good news is that the principles in Al-Anon (the 12-step program) for the most part, apply to adult children of a person with an eating disorder. And today, many mental health clinicians, unfortunately, have rich experience in working with adults whose parents suffer or have ever suffered from addiction. Here too, overlap exists, so
the adult child of a bulimic person can be understood and get effective help.

A core principle in the healing work revolves around boundaries, i.e. recognizing boundaries, dismantling unhealthy boundaries, constructing and honoring healthy boundaries.

Thank you again, for writing. I'm glad you found my article and were moved to share a bit of your story. Please feel free to write again.

warm regards,

Joanna

June 4, 2009 - 12:13pm
EmpowHER Guest
Anonymous

There are all kinds of families in the world. No one deserves to live in a domineering, hurtful or hostile environment. However, not everyone that lives in this kind of environment develops an eating disorder. A very small percentage of the entire population, for instance, develops anorexia. If simply living in a difficult environment caused an eating disorder, then the numbers would be greater than they are.

Likewise, there are many out there that come from perfectly fine families with life stressors that are not outside the normal range. Yet they go on to develop an eating problem.

Unless you have the genetics for it in the first place, an eating disorder is highly unlikely to develop. Research has shown that, for anorexics, they are very unlikely to come from homes that are abusive. They come from all kinds of home and all kinds of backgrounds.

The most common trigger for entrance into an eating disorder in the genetically susceptible?
Going on a diet. Losing weight is often initially met with positive comments from others. For the predisposed, it can have a calming effect and set into motion a cascade of biochemically based brain changes.

In my opinion, blaming and searching for causes is destructive. It does not allow the family to focus together in an attempt to fight the illness. It delves into possible causes that can distract from the real and urgent need for complete, full nutrition. It can potentially legitimize distorted thinking on the part of ill loved ones if the therapist talks only with the person suffering an ED and does not hear the family's perspective. Once a person is refed, then is the time to address anxieties, developmental issues, etc. if needed.

Family-Based therapy (aka the Maudsley Method) is research based and has the highest evidence for effectiveness in adolescents. It puts parents in charge. It does not counsel young sufferers until their brain is rehealed enough to make use of it. It does not blame families. It sees families as the best resource.

Who would you go to if your child was ill?

anne

June 4, 2009 - 10:27am
EmpowHER Guest
Anonymous

As the daughter of a chronic bulimic (my mother is now 70 years old), I feel comfortable saying that my grandmother had everything to do with my mother developing an eating disorder. She was domineering, hurtful and created an environment hostile to expression of feelings. (I should mention that I adored my grandmother but I saw how she interacted with my mother). As a result, my mother turned to food and developed a life-long problem that remains unresolved. I am on the side of holding parents responsible if they are contributors to a child developing an eating disorder. Growing up the daughter of a bulimic mother profoundly affected me and my ability to experience feelings without using food to mediate those feelings. Joanna's article resonated for me and my experience.

June 4, 2009 - 6:29am
EmpowHER Guest
Anonymous

This is exactly why evidenced-based research is essential. Children with a variety of ailments come from a variety of families. Blanket statements are incredibly harmful about any illness, ED's included and perhaps especially. And, more importantly, it flies in the face of current research.

When you are dealing with an illness of denial and distortion, you must-as a therapist-take this into account. I have SO much more to say on this, but am off to work.

My main point this morning is that there are real people and real families out here struggling with this illness. It is disheartening to be pre-judged as 'violators' and 'possible abusers' the minute we walk in the door (and we have been historically and still too often are).

I find it interesting that you say private residential places do not blame parents. That was not my experience at all. That was the place I felt it the most. We were not even allowed to see my 14 year old daughter for 5 weeks--and there was absolutely no good reason for this. It was inhumane. Had I more courage--or not so desperate to get her refed at the time--I would have pulled her out of there in a heartbeat.

anne

June 4, 2009 - 4:40am
Bob J.

Oops, double post.

June 3, 2009 - 9:18pm
Bob J.

As one with years of contact with people with EDs, and a fair measure of experience with their parents as well, I find it difficult and perhaps unwise to stereotype the sufferer’s background. While we all are rightfully looking for answers as to the causality of EDs, at this point in time it seems wisest to look to the broadest range of possibility.

Having said that, I believe that many people with EDs have suffered exactly the same sets of circumstances that Joanna sets forth. Abuse and boundary violations play a huge role in the development of EDs for all too many people.

Yet how are we to explain the fact that given the same set of circumstances, some people will develop an ED while others will not ? The explanation would seem to indicate that temperament plays a larger role than those who seek to narrow things down may currently acknowledge, and may exert such a strong influence that children may develop EDs under "good enough" parenting as well.

Currently there seems to be many different camps when it comes to explaining ED etiology. The recent movement to pooh-pooh and discount the early findings of Hilde Bruch is one example of this, even in the face of some suffers who come from exactly the backgrounds Bruch described.

Expensive private residential treatment programs seem particularly prone to the currently popular “The Parents are never to blame" position. Yet when it is parents who are asked pay the sort of fees such places often demand, such institutional positions can all too easily be seen as self-serving rather than evidence-based. All one has to do is listen to the horror stories from the childhoods of some sufferers to understand that stating this position is professionally irresponsible and without basis in fact.

At the same time, many people with EDs appear to come from authentically loving and conscientious homes. The range of backgrounds for people with EDs seems a wide one.

My sense is that every single one of the various etiological stances will find validity in certain individual cases, and that when it comes to producing an all-encompassing theory of ED development one is wise to remain open-minded, and not cleave too closely to any particular stance.

June 3, 2009 - 9:11pm
EmpowHER Guest
Anonymous

Read the Minnesota Starvation Study. It is a real eye opener as to the effects of starvation on a group of normal young men. Sound like an eating disorder? You bet!

anne

http://www.possibility.com/wiki/index.php?title=EffectsOfSemiStarvation

June 3, 2009 - 4:38pm
alysiak (reply to Anonymous)

What I find interesting about your comment is that you've addressed young men, a group I think often forgotten or ignored in our rush to judge or treat young women.

June 3, 2009 - 4:49pm
EmpowHER Guest
Anonymous

Look, there are a lot of 'theories' out there about what cause eating disorders. Its very confusing to parents. Is it a choice? Or an illness that is 'not a choice'? How you view what causes an eating disorder will determine how you treat it.

Human beings are complex, no question. Dr. Walter Kaye's research has shown that people who develop eating disorders typically suffer from childhood anxiety pre-eating disorder. Does this mean their 'boundaries were invaded' in a relentless and sustained way? No, not necessarily. Cynthia Bulik has described sufferers as having certain personality traits .

"...A childhood tendency that Bulik calls neuroticism may be an indicator for parents, doctors, and teachers to screen for children who are genetically predisposed to anorexia before they become sick.

“These kids are emotional Velcro,” Bulik says. Troubles that roll off other children’s backs really stick to them, and sometimes so subtly that their parents can’t tell. They tend to be well behaved and smart, but anxious and depressed, often about things over which they have no control—a dead animal in the road, for instance..."

Does this mean that others, parents included, have violated their boundaries? NO. To the contrary, these children may be well supported by their families, yet just plain highly sensitive. You do great damage to others in the family with these suppositions. Are the families of eating disordered patients perfect? Heck no. I'd never claim that. But neither are the families of children with cancer, diabetes, autism, schizophrenia or any other host of ailments.

Yes, I have lived through this difficult illness twice now...a sister and a daughter. I've also worked in a facility that treated young anorexics back in the '80's. I also have an undergraduate degree in social work and a master's degree in a related field and have worked directly with children for the past 25 years. I am in a 'related field' so to speak. My personal experience with this illness, twice over, has certainly affected my own attitudes toward mental health and families. First do no harm. And, my feeling is, the present very common approach to treating eating disorders is often quite hurtful to and exclusive of families. It often "listens" to eating disordered patients, sometimes lending credence to some of their cognitive distortions, which at times include distorted beliefs about families, friends, etc. Families, who one would think just might have clearer insight (not being starved or eating disordered, mind you) are often brushed asided, their contacted limited with their family member (if inpatient), their views questioned. At best, they are seen as expendable; at worst, they are excluded.

With my own daughter, I often found her thinking irrational and distorted at the height of her illness. It was a puzzle to me why I was told to 'listen to her' as though she were a fully functioning teen capable of making good decisions. At the time, she was clearly not. I loved her, but I knew she was not well or her usual self.

My points are pretty simple. This is a biologically based illness (Dr. Thomas Insel, head of NIMH, has said so himself), food is first and food is medicine, families are an ally in helping ill members back to wellness, treatment for anxiety and depression should take place (if needed, and they aren't always) once full nutrition has been re-established. Families should never be blamed. There is no evidence that families cause eating disorders and implying this can cause lasting damage (I also suffered PTSD over my daughter's long illness and recovery--a significant factor being the blame I felt for this illness). Is another family member's mental health worth less than the ED patient's? An approach that respects and supports the whole family is needed--and can be hard to find.

I am speaking up because I've had enough. I don't believe families are at fault--or any worse than other families. I am yelling that 'the emperor has no clothes.'

anne

June 3, 2009 - 2:45pm
EmpowHER Guest
Anonymous

There are many different ways to go about getting help for an eating disorder, but receiving the proper advice and treatment is extremely important. Eating disorders are very dangerous, and should not be left untreated due to the fact that over time the disease will only continue to worsen. Eatingdisorder.com is a very useful and helpful informational site about the different types of eating disorders, their symptoms and causes, treatment options that are available and more. I think this site is something that should be looked at by those who are in need of help with an eating disorder.

June 3, 2009 - 6:57am
EmpowHER Guest
Anonymous (reply to Anonymous)

Thank you so much for writing your comment to Joanna Poppink's article on eating disorders. We spent seventeen years trying to save our daughter from dying from anorexia, and this article made me feel sick and dirty. My daughter did die two years ago, and this article has brought up all the self doubt that we didn't do enough. It took over our lives for 17 years, and we failed isn't that enough to live with. I'd like to know why that woman is smiling when she has just hurt so many people. Mary S

July 28, 2009 - 5:59am
EmpowHER Guest
Anonymous (reply to Anonymous)

Dear Anne,

Thank you for speaking your opinion so plainly.

In my experience I see deep psychological healing is necessary
for solid and long term recovery from an eating disorder. Normal
brain and emotional development gets stalled when an eating disorder begins.

When the eating disorder behavior begins to diminish the psychological and emotional deficits in the person become more clear and also, thank goodness, become more available for healing and healthy growth.

The research in affect regulation and the new findings in neuroscience show that brain structure physically changes during deep psychotherapy. These changes enhance the person's ability to think, feel and behave in a more healthy way. (see the work of Allan Schore, Ph.D. and Daniel Siegel, M.D.) These statements are based on evidence based research.

I agree with you. Lack of proper nourishment distorts a person's cognitive and emotional capacities. Diminishing the acting out of an eating disorder is essential in the beginning of treatment, but it is not all the treatment. Love is an essential aspect of treatment as well.

What's also essential in the complex experience of genuine healing from the ravages of an eating disorder is a willingness and ability to look at self, to appraise without criticism or punishment, to own one's deficits and their consequences. It takes courage for a person with an eating disorder to heal. And it takes courage for a family to understand and support someone in recovery.

You speak of your experience in capital letters. Would you like to share your experience here?

best regards to you,

Joanna

June 2, 2009 - 9:55pm
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