Body of Evidence

I agree with you, the thing that people always seem to forget in the discussions about recovery is that accepting a vulnerability to relapse does NOT mean that you will always live with the illness on a day to day basis. I'm weight restored, don't hate my body, don't count calories, don't exercise obsessively - my former eating disorder doesn't affect my day to day life at all, not mentally or physically (except for a minor problem with low blood pressure that doesn't seem to want to go away. One day!). Despite this I am still careful when I have a stomach virus or am under a lot of stress, because if I under ate or lost weight unintentionally I would be putting myself at risk. Eating disorders are not life sentences. They require a person to be a little careful about their health, intake and weight, but they do not have to torment people every day of their lives.

Thank goodness for that :)

Great to hear your perspective on this Carrie (and Katie re comment above). I am probably looking for stories with 'happy endings' at the moment so was disappointed with the negative tone of the NY Times article. But having said that if enough people say "full recovery is not possible" then it takes away hope. So I choose to listen to those who do not perpetuate the negative (simply for a newspaper headline).

Thanks for a well thought out article. As someone just beginning in my recovery, this gives me a lot of hope and helps me understand some of my thought processes about recovery, and have a more realistic view of what my future in recovery may look like.

Dear Carrie,
Since my daughter became ill with anorexia, I have since learned that about 1/4 of the women in my small department at work are recovered from eating disorders. I would have had no idea! I think some of the personality traits that go along with eating disorders must be an advantage in our field. They are married-or not-have children-or not-still exercise-or not-they are excellent at what they do-very sociable and easy to be with and they all eat very naturally!

But when I read the NY Times article, I wondered how anyone could recover when they have been taught by therapists to think of themselves in not-so-kind labels like control-freak or perfectionist! It seems to me that different people have different "set-points" for anxiety. There should be no shame in having a higher set point and thus having more anxiety than others. But there should be a BIG shame on the eating disorder treatment providers who slap these labels on and make their clients think their personalities are defective! Not true! Yes, people (ALL people) need to learn to calm their anxiety in positive ways, but who the heck is going to know this when they are a small child or a teenager dealing with a brain on fire with fears and worries? Live and learn and move on-that seems to me how to recover!

Why no mention of Bipolar disease? All people with an eating disorder are Bipolar.

You did mention Depression, but what about Mania?

People in the grip of an eating disorder, are actually considered Psychotic.

I also think adult on-set eating disorders should be touched upon. Is that also caused by genetics and do they ever truly go away? You are an amazing person, Carrie, keep up the good work!!

Great post, Carrie. The truth is both crushing and uplifting- recognizing that I will never be 100% free of this struggle is hard- but at the same time offers me the self-forgiveness I need because I'm still struggling, even when I think "I ought to be over it by now." It doesn't do any good to look the other way and pretend something isn't there when it is... and doing so can put a person more at risk b/c they're not watching out for signs of relapse and being careful with themselves- people need to know their particular needs.

@David- I'm sure there are many people with eds that are bipolar. But certainly not ALL people with eds are bipolar. Not by a long shot.

Good post. I read the NYT article earlier in the week, and was left a bit depressed. I knew the "rule of thirds" -- 1/3 die, 1/3 never recover, and 1/3 recover -- but I felt that the NYT was a bit biased and chose to believe FULL recovery was not attainable.
Perhaps it is because I am treated by professionals who ARE 100% free of their EDs, but I believe that full recovery - rid of the physical and mental aspects of the disease - is definitely possible, though the road is long and arduous.

@David - not ALL people with EDs are bipolar. I, for one, am not.

Carrie, You are providing so many with words of wisdom that clinicians, parents, and those with eating disorders need to hear.

This is not a one size fits all disease - an all or nothing approach to define recovery or remission.

Where all of the clincians fell short for my D's treatment for anorexia is that they didn't know how important it was to get her to the first step

accurate and full weight restoration Quickly

So, she never had a chance to lose all the distorted thinking and behaviors that come with this biologically based illness.

At age 24 she is now able to work on squashing those behaviors while getting on with life and what she wants for her life without ED's control.

What she also needs now is concentrated help for trauma and anxiety that came along the way, not causing her anorexia but developing once ED had full control of her. And to lose some of her perfectionism that seems to make her feel "less than"

What you are teaching is that for someone with long term anorexia, it is not a simple "I am recovered" becaue I am "weight restored"

Your wisdom about the importance of keeping mindful to balance your life, learn how to deal with life's stressors, and to learn to love and accept yourself are important.

And, that anywhere along the way, if stress, illness or not eating to maintain your physiological health compromises you, then it's something that needs to be dealt with sooner, rather than later.

for those with long term illness, it is a more pro-active approach to consider yourself as "in remission" rather than fully recovered.

So, that you maintain your ability to intervene should the ED symptoms return

Carrie and her readers:

From a clinical perspective one of the difficulties in defining "remission" is one of defining terms. We simply must stop saying "eating disorders" when we mean a specific illness such as anorexia nervosa. There are many eating disorders: anorexia nervosa, bulimia nervosa, binge eating disorder, food phobia, etc etc. and they each have a different natural history and prognosis. To ask what the recovery/remission rate for an eating disorder is, is as senseless as asking what the recovery rate from " cancer" is-- it depends on which kind of cancer you mean.

I feel I must add that the statement "a third will die from their disorder" needs immediate clarification, for while anorexia nervosa is a severe and life-threatening illness, after more than 1600 patients at Kartini Clinic, we have never had a death in any patient under our care. And even if you were to include the three patients we are aware of who died several years after being removed from our care, against our advice, three out of 1600 is hardly a third! Take heart--but take seriously which treatment team you entrust with the treatment of a loved one. This is the essence of patient-centered care.

Thank you for this thoughtful coverage, Ms Arnold.