The Myth of Chronicity and the Untreatable Disorder
Posted Apr 04 2012 3:02pm
This blog post is Part Two in a series on Eating Disorder Mythbusting.
" Non-compliant " is one of those labels for people with eating disorders that have a tendency to get my knickers in a twist. Another label? "Chronic."
Okay, yes, eating disorders are technically chronic conditions, in that they don't resolve after a few weeks. Most medical conditions are chronic, and eating disorders are no exception. Adolescents with eating disorders who receive traditional psychotherapy generally need five to seven years to recover. This may be shorter with newer and/or more aggressive forms of treatment, but no one really knows for sure. You don't just "get over" an eating disorder- they're not like the common cold.
The problem with the "chronic" label is that it's generally code for "untreatable." It's often medical- and insurance-speak for "we don't want to deal with you" and "we think you're hopeless." All too frequently, someone gets the chronic label and they are written off. Attempts to help these patients are seen as a waste of resources. "You will just have to learn how to live with your eating disorder," they are told.
What they are not told is that this essentially means, "You will just have to slowly die from your disorder."
Which is, I must add, rather bollocks.
Yes, we don't yet know how to help some people with eating disorders. I don't think we're going to stop the fatalities anytime soon. But there are plenty of medical conditions from which people continue to die, but that doesn't mean we stop trying. Yet in eating disorders, that is often exactly what we do. We give up . We teach "harm reduction."We prescribe palliative care .
Frankly, I think this is a cop-out by a health system that doesn't want to pay for treatment that actually allows for a full recovery, and by physicians who either don't believe people can recover from an eating disorder (ie, "Once an anorexic/bulimic, always an anorexic/bulimic.") or who just plain old don't want to deal with an eating disorder sufferer and all that entails. It's much easier for a treatment provider to blame the patient and move on than admit they don't have all the answers and don't quite know what to do.
This label becomes a self-fulfilling prophecy. Sufferers often believe they don't need or deserve help. Being written off in such a way only confirms their belief in their inherent unworthiness and their inability to get better. Such barriers to receiving care, I believe, probably contributes to the high suicide rate in eating disorders. This won't get any better and no one will help me. I've been there, in the dark, late at night, sleepless, pillow once again soaked with tears. I've thought that suicide was the only option left.
The fact remains: people who may have been written off as "chronic" can and do recover from eating disorders. I'm one of them. Several of the blogs I read regularly by people who have put their eating disorder behind them were similarly labeled. This past December, a woman from British Columbia was in dire straights due to more than a decade of anorexia, and she reported that the hospital in Vancouver said they couldn't help her. She was on her own. She bravely took her story public and received treatment for several months in neighboring Edmonton. Currently, this woman is at a healthy weight and well on her way to recovery .
We need better awareness of eating disorders so that people can receive treatment earlier in the course of illness. We also need more treatment options so that people who haven't thus far responded to other options have something else to try. We need to remember the power of hope.