Another word bites the dust

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.!


  1. When you are queen and I am princess of England I will join you in insisting that "in remission" is used in the UK as well as in the US.

    For me, the debate about Severe and Enduring Eating Disorders ties in with the discussion on the differences between treatment on either side of the Atlantic. I know that many British carers at the conference were actually heartened by the discussion of the "recovery model" and before you have them certified for this please remember that there are no beds to put them in.

    Neither are there any long term beds for their loved ones as, for good or ill (and it's probably a bit of both) the old system of inpatient care has been swept away and replaced by evidence based short term interventions. Many of them are very successful. The Maudsley Method is one of them Specialist CBT is another and both of those have been hugely developed in the UK as well as in the US.

    The problem is as you say "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".

    Short term evidence based interventions do not allow for this. There is also a danger with them that those offering them appear to promise much (full recovery in a sense you would appreciate) and then withdraw support when this isn't achieved leaving the sufferer and/or carer feeling as if it is their fault that they have failed.

    In a free market system IF (and I know it's a huge if) there is the finance, the patient can try other options, other therapies, other therapists. In our system there is often nothing else. Just the general mental health system which as Paul Robinson pointed out, sometimes fails even to identify eating disorders as mental illnesses. In that case ANYONE who is willing to offer ANY support is gratefully grasped hold of however limited that support may be.

    I AGREE - it's wrong. "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" but we do need resources to hang on in there for the long term. We need more research into what works and what doesn't, we need clinicians who will hang on in there with the long term patient (and who are allowed by the system in which they work to do so).

  2. I would say that my anorexia is in remission at the moment. I am fully weight restored and 99% free from eating disordered thoughts. I went through some very stressful experiences last month and completely lost my appetite, but had no urges to start restricting again and did not lose weight because I just defaulted to my meal-plan way of eating. The rest of the time I can eat, dare I say it, quite intuitively. Since I was seriously ill just last year this feels like some kind of miracle! But I wouldn't say that I am recovered, because I think if, say, I had some kind of physical illness which put me under a lot of stress and made it very difficult to eat for a LONG period of time, say six months or so, I may well relapse eventually. I would love to know what people who identify themselves as recovered would think of this topic.

    I totally agree with you about palliative care by the way. It infuriates me that patients are treated this way. I can't speak about treatment in the US but in the UK it feels like it is seen as a failure on the part of the patient - they just didn't want to 'give up' the anorexia, or they didn't try hard enough, and the system couldn't keep on 'wasting' time and money on them. I could use some very rude words in describing my feelings about this attitude. Not wanting to get better, or being scared to, is a symptom of the disorder. It's just all so sad.

  3. I was hoping this would resonate. Jessa and Katie, I would be interested to hear from you whether you think these sentiments would be shared by the majority of patients?

    Marcella, I'm operating in theory mode here and not reality. I am of the thinking that we have to start with theory and then change practice. Laws and protocols can be changed, funding can be addressed, but the first thing is to agree on a goal. I can't bear to start with where we are now and then be grateful for improvements: the distance between where we are (on either side of the pond) and where we could and SHOULD and COULD be is too wide a canyon right now.

  4. Thanks for raising this issue Laura, which I think is hugely complex. I've welcomed the e-mail interaction you and I have had over the past week, because I do have quite strong (yet mixed) feelings about the issue of 'chronic AN'. I wrote quite a lot on your post of 31 March, so I won't repeat everything I said there.

    At one time (10 yrs ago, after 22 yrs of AN) it was decided (and I agreed) that I was a 'chronic patient'. I couldn't see a 'way out' of AN. This was not for lack of having tried to recover, but because I'd never been able to do it. Emotionally it 'killed' me and I couldn't cope with life in a fed state. Because I managed to work full time and do well in my job, despite having low weight AN I thought (hoped...) that recovery didn't matter. I was not desperately unhappy, just detached from the real world via my AN and my academic research. I thought I was doing OK, but then the AN 'caught up with me' and I became very physically ill. At that point I wanted to try to 'ditch' my AN.

    I'm 4 yrs into recovery and am much better. However, the process of recovery has been hell at times. I have felt utterly suicidal at times without my anorexic rituals to guide me through each day. I often use the terms 'getting better' and 'in remission', because I do think that freedom from AN can be elusive for some, especially after many yrs. Nutrition and weight gain have been vital components of my getting better, but the most helpful component has been long term talking therapy with a specialist psychiatrist.

    I agree with Marcella that "we need clinicians who will hang on in there with the long term patient (and who are allowed by the system in which they work to do so)." I agree that AN is a brain illness, but it is accompanied by powerful emotions with personal meanings that I, personally, have HAD to work through in long term therapy to get better. The idea that the thought processes of AN are a result of malnutrition alone has never been helpful for me.

  5. Laura,

    I definitely agree with your perspective on this. The palliative care for EDs makes my blood boil. When I was very ill, I looked to the future with little hope, but I appreciate the interventions performed on my behalf every day that I live happily with my husband, little dog, friends, healthy body, and fulfilling work now.

    Thank you so much for the work that you do to make sure the terms we are using are consistent and precise. It makes a difference in terms of conceptualizing EDs. While I admit that I use the term "recovery," I have to also say that it seemed defeating to apply to myself once I was exposed to the "recovery model" for chronic mental illnesses and addictions in my graduate behavioral health courses.

    I don't have another term to recommend and I don't consider myself recovered completely yet--just far in recovery--so I will return to answer your question about terminology when I am at this point :)


  6. I don't like the word "remission" AT ALL. It makes it seem like being healthy is just a temporary state and that a relapse of the ED is inevitable. I may always have a biological predisposition that puts me at risk of a relapse but I refuse to accept that one is inevitable.

  7. I think that what is important in cases of 'chronic' AN (that don't respond well to treatment that works for other patients) is to determine WHY this is. Why do some patients respond well to inpatient/outpatient treatment but others do not?

    The treatment I received in my teens was not dissimilar to the Maudsley model. I was treated at home and my mother took charge of my diet. She was firm and kind in her approach - just as she always has been. Many kids would have faired well with this approach, but I didn't. I was just too frightened of life outside of my anorexic rituals.

    Why do some kids manage to turn their lives around with re-feeding, therapy and parental support/assistance while others do not? I saw other teens managing to do this when I couldn't. As they gained weight they seemed to be able to gradually develop a life outside of their AN - until eventually they neither wanted nor needed AN. Rather, they wanted the life that their peers were living.

    I now know why I struggled to make the normal social and emotional transitions most people make during their teens - where they develop an identity and a life around relationships with others. My difficulty in doing this was what kept me in AN. I lacked the intuitive capacity to develop socially/emotionally like other kids during my teens. This was part of an ASD rather than AN per se. Had I not had long term therapy - with psychiatric analysis of my characteristics and life pre-AN, I would never have learnt this. What has helped me to recover from AN (in addition to good nutriton and weight gain) has being recognising and accepting my co-morbid difficulties and focusing on working with these difficulties.

    The treatment approach needs to be modified for anorexic children who have struggled to develop socially and emotionally. Yes, they need to be re-fed, but they don't necessarily adapt well to post-re-feeding activities that normally developing children enjoy and cope well with. For me, it felt as though I was being thrown back into deep water and drowning - to the point that I felt I needed the rituals of my AN again.

  8. I agree! We absolutely do need to have additional and alternative therapies when there are pre-morbid or or concurrent conditions. ASD worsens AN, and the reverse. Treating one without treating the other is unacceptable.

    Re-feeding only heals the brain from malnourishment and retrains normality around food. It doesn't fix other damage or build necessary life-skills. When I argue for re-feeding it is not as an alternative to anything else but a necessary foundation to everything else we do to support the whole person in gaining wellness.

  9. Hear, hear!! I think the use of the word "recovery" or "recovered" can be very, very tricky. Especially the use of "recovered." I mean, how do we eve REALLY know, unless we have a way of seeing our entire lives unfold before us?

    I know that, in one of my early periods of recovery, I used the word Recovered to describe myself. And, I really, really thought that I was. For a while there, I had NO - zip, zero, zilch - eating disordered thoughts. I ate intuitively. Not only could I not imagine going back to an eating disorder, but I couldn't even imagine wanting to!

    And then, about a year later, I relapsed. So, there's that. Since then, I haven't used the term "recovered," and I, too, think the remission model works much better. Personally speaking, I currently refer to myself as "in recovery" from an e.d. because that's where I am. Recovery/treatment is still a VERY active process because my e.d. is still trying VERY hard to be active. It's a constant struggle AND I'm making progress and non-ed behaviors are starting to become more automatic. I'm looking forward to being able to refer to my e.d. as "in remission."

  10. Should we add Survivor to the list of terms?

  11. What an interesting issue- I've just found this blog via Katie's (above commenter). I am a "recovering" I like to say anorexic. I am certainly not "recovered" as, although "living" my life for the most part ok, I'm at a high pressure university, I can get some enjoyment out of life, in all honesty I am very constrained by food rituals, thoughts about food, fear of social situations, crazy emotional states of mind and, perhaps most importantly am maintaining a bmi of under 15 without menstruation and have done for a few years since discharging from an inpatient unit where I got myself up from a very low weight.
    I agree with the other commenters about the frustration of being put under the title of "chronic" which essentially takes away any hope I have. I feel like I need help to recover although I know it has to come from me. Having not been able to put on weight I have been dropped from therapy and only receive "support and monitoring", which is essentially a weigh-in and a 5 minute catch-up. I definitely respect the term "remission" because, even though I'm not terribly optimistic at the moment, I do hope that one day I will get to that stage. I think realism is essential and believe that the term remission keeps that present, demonstrating that one needs always to be aware of the risk of relapse and take the necessary precautions to avoid it.
    I'll be reading.

  12. Thank you again for a brilliant post.

    16 years ago, I was very sick. I'm wonderfully healthy now, physically and psychologically. I do have triggers, however, and sometimes....I don't do the best I can at handling them. So an argument with my husband may mean that I find myself wanting to deny myself dinner for daring to have a voice.

    These thoughts are still very much there.
    My coping skills are a million times better.
    I've always been reluctant to say "recovered." For one thing, it makes it sound like the eating disorder was just a phase of my life. It wasn't. It's still a part of my life. I have safety nets in place, just in case.
    For me, it used to be that I believed recovery wasn't possible. I would always be sick.
    Then, as I did heal, I started thinking that I might tempt Fate if I said I was recovered.

    My brain is wired a particular way. I've learned skills to override some of that programming, and am happy to report those skills are constantly evolving and helping me grow and challenge myself. Not food-wise now, I don't need that at this point in my life. But in other areas, I'm pushing, I'm learning, I'm growing.

    Am I recovering? Yes. Am I recovered? I don't think I'll ever be comfy with that word. It implies the thoughts are all gone, that they never emerge, that everything on that front is taken care of.

  13. For me, a 24-year-old "recovering" anorexic... when others realized my "problem" around age 18 i never thoguht twice about it. around age 21 i was literally unable to live my life, hold a job and finish college.
    i was approach yet again without choices this time, to sit down and admit i had anorexia and i needed help.
    i disregarded the fact for a long time, choosing to gain a little and actively live my life.
    begining of this year i chose to breakdown, admit to myself i have anorexia really badly and admit i want to get better. it was not until THIS time period of acceptance that i can say i have been "recovering".
    however, being up to my neck in student loans, house rent, bills, insurance, cell phone, gas, and having to buy a used car leaves recovery, not by choice on the back burner.
    it is SO hard and SUCH a struggle to fight this stupid illness at 24 with a full time job, on your own, free from any medical supervision or support. not to mention on an incredible budget that does not allow for food surplus.

    i disgress this turned into whining, my apologies... but i think "recoery" should define the turning point when i sufferer admits and accepts the problem and plans to face the fight everyday for the rest of their lives. regardless of food/weight/mental well being, it will all come with weight gain and proper nourishment.

    people notice. people ask. i surely havent noticed, but my parents are overjoyed at how "funny' i am once again, at how i will eat in front of them, at how i take a joy to cooking, and how i make plans, i go out(and spend no money ha) and i am actually excited about life, about every day, about the sun and spending time with people.

    while i do no realize these things i just assume i have always been this way, i have chosen to accept the disease and fight it every single day.

  14. I want to thank you all for these insights. I'm learning a lot from you. This is important stuff.

  15. Laura, I think that this is a very important and difficult discussion; our language leaves us without resource here it seems.

    I understand and take all the points made but would be reluctant to encourage my own daughter to say 'I am in remission from my anorexia' - it implies to many that it is only a question of time before it will return. How about a simple 'I am well' when one reaches the state of remission/recovery? After all, we none of us know what lies in our future and I don't feel that, while we are well, we need always be burdened/'labelled' with our past histories (although I fully understand that it would be irresponsible not to maintain vigilance and to do what we can to prevent recurrence).

    Erica (who can't work out how to access her account!)

  16. I get that, totally.

    I'm not sure what is the greater risk: setting families and patients up for failure by not keeping the risk of relapse in the picture, or the risk of self-fulfilling or negative thinking.

    I guess part of the answer lies in what is the truth: if there is a risk of relapse and vigilance IS necessary then perhaps we can't afford to use words that mislead ourselves and others. If the possibility of relapse actually brings more risk, then we need to know that, too.


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