Number One Reason for Developing an Eating Disorder

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.

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

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

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

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.

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.

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.

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.