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.
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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 - 2:27pmThis Comment
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