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Another word bites the dust

Posted Apr 04 2010 5:52am
I've used the word 'recovery' all my life, yet this past month I've been brooding over how it is sometimes used in a way that I do not intend it and in fact abhor.

Words matter. People take the words 'recovery' 'in recovery' 'recovered' 'over' 'cured' 'survivor'*and 'remission' very seriously. Which word you use says something about what you think the illness is and how it should be dealt with.

Some who use the word 'recovered,' or 'recover-ed' like my friend Jenni Schaefer , mean the illness is dead, buried, and beaten. The illness isn't coming back because it has been extinguished at all levels. The word is used as an acknowledgement of the work of going from ill to well. Discussion of relapse risk can be seen as an affront to that triumph: if the symptoms could come back then the person hasn't really beaten it. In this way recovered means the person is even less likely to have these symptoms than a person who has never had an eating disorder. I respect that point of view, though I don't share it because I think the predisposition is based in the brain and can be switched back on under certain circumstances. I believe all former eating disorder patients need to live without tempting ED with diets or unrelieved stress or excessive exercise. I believe former patients should have an early warning system in place for life: doctors and loved ones who know what to look for and will intervene early. Access to expert care should be available at the first sign of trouble. In my opinion the work, and the triumph, of gaining full wellness after an eating disorder is in no way diminished by the fact that relapse could occur.

I've used the word recovery to mean the process of getting entirely well and the state of being well. Not managing the illness, not settling for less. I've used it carelessly, I think, and assumed everyone took the same meaning from it. When I've used "full recovery" and "recovered patient" I meant fully well and not just weight restored or eating normally. I meant the description we posted on the F.E.A.S.T. site .

But I did not take into account another use of the word recovery: the one we see in the "recovery model" for chronic mental illness. I heard a great deal about this model and this use of the word when I was in London last month and it raised my blood pressure. This use of the word means re-framing the goals for the treatment process. The recovery model asks the patient what they want, what the illness means to them, and sets goals based on those goals and values. Since this idea comes out of the addictions and schizophrenia world I understand the shift away from pathologizing and insisting on "cure" in that context but absolutely reject it with eating disorders.

If I were Queen I would make people use the term remission with eating disorders. Remission implies treatment has successfully taken the illness and the symptoms out of the picture while still acknowledging a higher risk of the illness coming back. It honors the work of treatment without hiding from the fact that there is a need for vigilance. I've tried to sell this idea to parents with little success: in fact I've caused hurt and annoyance. The word and idea of remission struck them as defeatist and pessimistic.

Eating disorders do not need to be seen as a chronic illness with which one simply lives or manages the symptoms. Eating disorders are treatable to full .... health? wellness? normality?... I no longer have a word to use and I resent it. I dread going through everything I've written to switch to another word especially when I don't have a satisfying alternative.

But if 'recovery' is taken to mean 'improved quality of life without the goal of a life free of the eating disorder symptoms and thoughts' then I don't want to be associated with it. I reject it.

I reject is as I do the idea of palliative care for longtime uncompliant patients and I reject the notion that an eating disorder is a lifelong condition.

There will be patients who do not end up healthy. This is a very difficult illness and we do a very poor job of treating it. Most patients also have co-morbid issues that remain untreated and too many are left marinating in their illness and suffer chronic brain damage. The goal of eating disorder treatment, however, needs to be agreed upon. Hope and assertive care can not be withdrawn. Living "with" the illness is unacceptable if there is anything we can do - and there is, as long as the patient is alive.

I may have to give up the word recovery. I will not, however, be giving up the idea. I just need a new word for it.

*added. Thank you, M.B.!
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