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An unnecessary tragedy

Posted Jun 13 2010 12:37pm
The death of any young person is almost invariably a tragedy. But when I heard of Erin's death from anorexia, the tragedy seemed much worse. Not because of the specific cause of death (an eating disorder) but because her death was completely unnecessary.

I've only heard the tip of the iceberg when it comes to this family's suffering for almost 20 years, and it is already almost unimaginable. Even the diagnosis of anorexia can be tragic, but when the system colludes with the eating disorder and gives the family and sufferer the finger, well, that just adds insult to injury.

Yes, some cases of anorexia are harder to treat than others, and Erin's wasn't an easy case. But some cancers are more difficult to treat, and we don't sit around and ask the tumor why it doesn't want to stop growing. Cancer cells keep dividing; that's the nature of the beast, and we don't blame the damn cells, we just do everything we can to keep them from dividing. So why is it that people with eating disorders are fundamentally expected to want and embrace recovery when everything in their brains is telling them to keep starving, bingeing, and purging?

Anosognostic and angry patients aren't easy to treat, and it's all to easy to comply with an anorexic's stated wishes rather than her unstated needs. We all do it- it keeps the peace, allows us to continue in our lives with a minimum of fuss. But an eating disorder can mean that a patient's wishes and desires can become deadly. Patients want to leave treatment prematurely. They want to remain at a low weight. But these are symptoms of the eating disorder rather than true inner desires of the patient. I don't understand why it's so hard to separate these two facts. In Erin's case, the system blatantly didn't separate her eating disorder symptoms from her true needs, and now Erin is gone and there's not a damn thing any of us can do about it.

It's easy to think that at least Erin isn't suffering anymore, that if she couldn't be helped, then it was better this way. Maybe these sentiments are true--I don't know. But as soon as I think this, I want to shake myself in utter frustration. We know how to treat eating disorders. We do. We frequently suck at it, but we know how to treat EDs. Erin didn't have to die. She shouldn't have had to wait to want and embrace recovery before her treatment providers removed every option but recovery. When the prospect of getting better is so exhausting and frightening, and when your brain feels so much better when you are ill, it's no wonder that many sufferers simply find recovery a difficult concept to embrace.

Erin was almost certainly labeled "chronic" and "resistant," which are pretty much key words for "hopeless" and "palliative care." I know I got all of these labels. Talk about depressing and demoralizing--I doubted my own recovery enough. The last thing I needed was someone telling me "I can't help you." What ultimately made the difference for me was not my sudden willingness to gain weight but a therapist who left me with no other option but recovery. By doing this, she was telling me that she believed I could get well.

Erin won't get this chance to get well. Her mother won't get to plan her wedding. Erin's death wasn't a sudden freak occurrence that caught everyone off guard. It was the result of years of illness and years of our health care system's neglecting to properly treat her illness. Her eating disorder killed her, yes, but our fucked up, outdated, and shortsighted medical system played just as large of a role.
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