The Myth of Chronicity and the Untreatable Disorder

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.

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16 comments:

extralongtail said...

Thank you so much for this post, Carrie...

I was labelled as 'chronic' in my 20s after 15 years of AN and after I refused treatment with therapist who had a very fixed idea of what anorexia nervosa is and who made me feel alienated rather than motivated. And so I decided to accept 'chronic'.

When I was at death's door in my late 30s a hospital Consultant (who was treating me for a complication of anorexia) asked me why I wasn't being treated for anorexia. I told him that no-one had suggested it for years. He was horrifed and wrote to my GP who referred me to a psychiatrist who specialises in dealing with 'no hopers'...

I have done REALLY WELL with this psychiatrist - who helped me first with weight gain, and then with co-morbidities. The very first thing he said to me was that no-one should have 'written me off' as they had done.

Traditional treatments didn't work for me, but that didn't mean there was no hope...

wendy said...

This post brings tears to my eyes because my 25 year old daughter was told this for almost ten years, that she was chronic, and needed to be personally motivated to recover. She felt like a treatment failure and that her life was doomed with ED voices and isolation. She had chronic suicidal thoughts. We found FEAST and learned from Carrie, and Dr. Kaye and others that what my daughter really needed was an accurate and fully weight restored body and her malnourished brain would begin to heal. I feel so sad for anyone who is seeing these clinicians who don't really understand what anorexia is, and who want to blame the sufferer and parents. Shame on them

Jen said...
This comment has been removed by a blog administrator.
Anonymous said...

Carrie,

Thank you so much for writing this. I think that the 'chronic' label is one the treatment centre I used to attend used to discharge a number of patients. I really think treatment providers need to provide a sense of hope for patients and hold that hope for patients until they can carry it for themselves, and not just equate the chronic label as 'hopeless' and 'untreatable' so we should give up. If this was a purely physical illness, we wouldn't even dream of telling a patient the things people with ED's are told.

Rachel said...

I completely agree that our endurance is sadly lacking in our approach to those struggling with an eating disorder. I think you're right: we are creating a self fulfilling prophecy: we don't believe in them; they don't believe in themselves. Where's the hope in that?

I would advocate that hope is the best place to start. If we can believe in the person, rather than becoming frustrated with the disorder, perhaps we can help them believe that they are MORE than their disorder. If you're interested, I encourage you to check out this article on anorexia and college students @ http://www.creativeeducation.co.uk/blog/index.php/2012/03/do-you-have-a-student-with-anorexia-in-your-class/comment-page-1/#comment-28170

It has some good things to say on the stressors and pressures of college life as well as strategies for balanced living and promoting recovery.

HikerRD said...

Practitioners may be equally responsible for the "treatment failures". We may fail to push people to appropriate weight restoration, we forget that therapy has no place for a non-rational/starved brain, and we often fail to provide the hope that is essential for patients and their families to recover.
Yes, sometimes we are part of the problem.

NS said...

This message is for Rachel - I tried to follow your link and found that my system will not open it because the site is infected ( I can go to the creativeeducation main site, but the blog is blocked)

Anonymous said...

Anon:
I've read a few blogs like this. I understand the message that you want to put out, but i cannot help but think it is a bit one sided fails to really understand how it is for some people with severe chronic ed's. It came come of like you want to keep forcing some people into treatment and if that is going to work. This to can be quite harmful. If you haven't i recommend you read Paul Robinson's Severe and Eating Disorders SEEDs book. Pallative care is the right approach for some people and it can be harmful to not recognize that.

Niika said...

I agree with a commenter above... "chronic" or "treatment resistant" is just a label they put on a patient so they can toss them out the door and not feel guilty. It's such complete bullshit. It makes me so angry that people do this.

Alex @ Raw Recovery said...

This is a great post and so true. When I switched insurance companies because an eating disorder treatment center said I'd receive better care, the new insurance dropped me from day treatment program and left my parents to foot the bill. I spent a year in and out of 4 treatment centers and I'm lucky my parents were able to make some sacrifices to afford inpatient care because my insurance wouldn't cover a cent, and I needed 24 hr care badly. It makes me really angry that insurance does things like that to people- cut them off after a day when they clearly need help, and I'm not just talking about myself. I've seen it happen over and over to others.

I do however think that the individual needs to WANT to get better, because all the treatment in the world won't help you unless you are ready to give it up. As I write this I'm almost 22 weeks symptom free and life without my eating disorder is so much better that there is no comparison.

Best of luck to you and everyone out there who has to deal with this wretched disease. Let's fight this!

Jen said...

Wow! I asked Carrie to remove my first post because I realized it was too revealing of a family member's struggle. However, having just read the anonymous quote above in which the writer refers to Robinson's book (which I have), I felt I must respond.

Briefly, no matter how sick, how entrenched, how chronic, how non-compliant my family member is/has been, at every step without a doubt she has said she has wanted to live.

When someone says they want to live, one should keep on working to save his/her life because the idea of someone out there still caring is hugely energy providing.

There may come a point when a person wants to quit fighting. Perhaps the writer has a point, that point palliative care may be the answer but before that step is taken, I would hope that the person's therapist would take a look at the recently published paper on a different form of motivation therapy. I need to go look for the reference and will cite it here when I find it. Giving up altogether before exploring all the options seems like giving up on life.

Jen said...

Here's the article: http://onlinelibrary.wiley.com/doi/10.1002/erv.1080/pdf

Carrie's original post brought me to comment because there are people with ED's who are really, really hard to treat but that doesn't mean they don't want to get well. I hope more residential treatment centers will develop programs for these folks to give them a chance rather than throw them out because they are "non-compliant", "chronic" or "entrenched."

Anonymous said...

I know a person who have been on pallative care because of their severe AN for over 10 years. When their care has been got right it has improved their quality of life. The package that has been drawn up for them involves carers coming into their home and they have gone on respite. So far it's been the right choice for them.
I was discharged at a very low weight but i don't want to discuss my experiences in this post.

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Heather said...

What a really amazing post.
I can honestly say that I had resolved myself to the fact long ago that my ED was something that would never really go away, but that could only be "managed" - this was especially pernicious because it lead me to believe that I didn't deserve help ESPECIALLY when I was at a healthy weight, but when my thoughts and behaviors around food and exercise were out of control and essentially dictating every choice in my life. Thank you for bringing to light the idea that "chronic" doesn't need to mean relegating to the hospital permanently but that the insidiousness of this idea is that we don't deserve care if we're "not that bad". To have a life that centers around our ED is no life at all. Thanks again for this post.

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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