Wednesday, July 21, 2010

"Meet my Sister, Ana Rexia"


In Spring and Summer it sometimes feels to those of us in adolescent medicine as if patients with anorexia, bulimia and other eating disorders simply come out of the woodwork. These patients are enormously consuming of time, energy, effort and empathy, not to mention their parents' funds. Many of them take months if not years to recover and during this time their parents are often forced to focus on the patient to the exclusion of themselves and their other children.

In the Journal of Adolescent Health this Spring, four clinicians from Toronto Sick Children's Hospital conducted a survey to evaluate the experiences of the siblings of twenty siblings of adolescents with an eating disorder (AED). Following are quotations from their interviews with these 10-18 year old siblings that illustrate some of the key themes they discovered. Anyone who has lived with a friend, child or sibling with ED will recognize the issues:

the struggle to understand:
"Yeah it's like, when people are saying 'what is wrong with those people;why don't they just control it', you feel kind of defensive but you're thinking the same thing."

acute awareness of ED behaviors and thoughts:
"I hear (people saying)'I'm fat' a lot more than I used to and I hear 'I need to go on a diet'...a lot more."

challenges in understanding non-eating-related obsessive behavior:
"When she is ready to go to school, she would tap the pencil on the table. When she's brushing her teeth she has to touch the tap. Once I tried to stop her from doing this and she said, 'no I have to do it.'....Why do they do those things?"

increase in family conflicts and arguments:
"My parents fight if she doesn't eat and she doesn't want to eat. So it's kind of weird because all you hear is yelling and stuff just because she's not eating."

compassion and concern for the AED:
"...you can't not think about it. How can you not think about it when someone who you love is just suffering?"

overwhelming sense of responsibility for the AED:
"...I blamed myself for that. I don't know, I just thought 'what did I say?' or 'what did I do that made her feel she wasn't good enough?...Maybe I should not have said, 'those pants are too small."

pervasiveness of the ED in all aspects of the siblings' life:
"sure it does affect the way I see myself and it does affect the way I see the world; the way I see my sister, our relationship; how we used to talk and how we used to laugh. We don't do that as much anymore."

The conflicts, pathos and compassion in these comments is often forgotten in the intensive programs organized around the AED. As with any sibling of a chronically ill patient or of a special needs child, their special concerns need to be elicited expressly since they are often left out or left home while the parents and patients' needs are addressed. What this study shows is that these collaterally affected siblings could be some of the strongest allies in the therapeutic team. But it's clear that we need to specifically address their own needs too.

photo credit: www.hypericum.wordpress.com

3 comments:

  1. Hi Ann! Thanks for your great comments on such an important topic. A really great young adult fiction book that touches on disordered eating is the book LOOKS by Madeleine George. It's the story of an unlikely friendship that develops between a girl who suffers from anorexia with a girl who is overweight. The book is amazing! The author has a very compassionate tone and is very insightful. Some of your patients may like it.

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  2. Thanks for that suggestion. Young patients often need "bibliotherapy" when they cannot or will not connect to professionals.

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