Rethinking survivorship: What the ED community can learn from those who still struggle

The eating disorder community loves personal narratives (especially of celebrities). Generally, the research and advocacy community prefers narratives of people who are well–or at least on their way to wellness. Some of this preference is strategic- sturm und drang stories don’t generally achieve donations or the message of hope that family and friends are looking for. Some of this preference is simply availability- I was much more willing to share my story when I was on an upswing rather than a downswing. Embarrassment and shame had a huge role to play in that, as well as my own desire to keep my struggles a secret.

For the record, individuals sharing stories of their own recovery isn’t a bad thing. But it’s not the whole picture. I’ve seen a number of qualitative research articles looking at what sufferers thought of recovery and how they got there. What you don’t see are qualitative studies of people who remain chronically ill, or cycle through the process of remission and relapse. What the eating disorder community hasn’t asked (at least, not systematically) is what can these people teach us about how to treat eating disorders?

It sounds pretty counter-intuitive, right? I mean, if you want to learn about ED recovery and treatment, shouldn’t you focus on the people for whom it’s worked? Maybe not. Welcome to the wild and crazy world of survivorship bias. Quoth Wikipedia:

Survivorship bias is the logical error of concentrating on the people or things that “survived” some process and inadvertently overlooking those that didn’t because of their lack of visibility. This can lead to false conclusions in several different ways. The survivors may literally be people, as in a medical study, or could be companies or research subjects or applicants for a job, or anything that must make it past some selection process to be considered further.

In the field of eating disorders, this could mean focusing on those who are in recovery, in treatment, or even still living, as opposed to focusing on what factors could have contributed to the less ideal outcomes of those who are still ill, not in treatment, or have died from their ED.

not so smartThe ED field isn’t alone in this type of thinking. It’s a human flaw- we all do it. We want to know why some businesses succeed, so we study Starbucks and Apple. We don’t look at the string of restaurants that have failed in our own town. On his blog, You Are Not So Smart, author David McRaney blogged about how mathematicians during World War II had to face the survivorship bias problem.

Bombers at that time were nicknamed flying coffins for obvious reasons: pilots had the bad tendency of dying during combat missions (it’s what happened to my great uncle). Top brass at the War Department knew that the bombers needed to have more steel to reinforce them, but put too much steel and the planes wouldn’t get off the ground. So the question was where to put the steel. McRaney writes:

The military looked at the bombers that had returned from enemy territory. They recorded where those planes had taken the most damage. Over and over again, they saw the bullet holes tended to accumulate along the wings, around the tail gunner, and down the center of the body. Wings. Body. Tail gunner. Considering this information, where would you put the extra armor? Naturally, the commanders wanted to put the thicker protection where they could clearly see the most damage, where the holes clustered. But Wald said no, that would be precisely the wrong decision. Putting the armor there wouldn’t improve their chances at all. 

Do you understand why it was a foolish idea? The mistake, which Wald saw instantly, was that the holes showed where the planes were strongest. The holes showed where a bomber could be shot and still survive the flight home, Wald explained. After all, here they were, holes and all. It was the planes that weren’t there that needed extra protection, and they had needed it in places that these planes had not. The holes in the surviving planes actually revealed the locations that needed the least additional armor. Look at where the survivors are unharmed, he said, and that’s where these bombers are most vulnerable; that’s where the planes that didn’t make it back were hit.

{snip}

If you spend your life only learning from survivors, buying books about successful people and poring over the history of companies that shook the planet, your knowledge of the world will be strongly biased and enormously incomplete. As best I can tell, here is the trick: When looking for advice, you should look for what not to do, for what is missing as Phil Plait suggested, but don’t expect to find it among the quotes and biographical records of people whose signals rose above the noise. They may have no idea how or if they lucked up. What you can’t see, and what they can’t see, is that the successful tend to make it more probable that unlikely events will happen to them while trying to steer themselves into the positive side of randomness. They stick with it, remaining open to better opportunities that may require abandoning their current paths, and that’s something you can start doing right now without reading a single self-help proverb, maxim, or aphorism. Also, keep in mind that those who fail rarely get paid for advice on how not to fail, which is too bad because despite how it may seem, success boils down to serially avoiding catastrophic failure while routinely absorbing manageable damage.

I see this a lot in the questions people email me. They generally ask “How did you recover?” or “What worked for you?” Aside from the fact that I don’t consider myself fully recovered (I consider my illness mostly in remission, and I do think I am doing well in recovery, the fact remains that I am NOT fully recovered), these questions reflect our innate survivorship bias. Maybe better questions to ask would be what didn’t work for me. Maybe an even better question would be to talk to people who aren’t well and look at similarities in their stories. An even better approach would be to look at what types of factors are missing from people who are doing well, and what is missing and present from people who still struggle.

The fact is, we can learn a lot from people with EDs regardless of where they are at in recovery. And they have lots of important things to say. I think we forget to make sure that they also feel valued in the ED community, not shunned because they haven’t achieved some pinnacle of recovery. Their story matters. We need to listen, and we need to shut up and learn.

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16 Responses to “Rethinking survivorship: What the ED community can learn from those who still struggle”

  1. Yes. Thank you. I get quite frustrated that the only stories the media wants to focus on are those of people who are “all better”. Usually celebs, but sometimes regular people who are doing some sort of advocacy, and it’s always about “Oh I *used* to have this problem but that’s done now”…and it really implies, like…I don’t know, shame to me. Like, it’s not okay to talk about it until you’re no longer experiencing it. All that does is increase the need for privacy and solitude and secrecy that so many with EDs cling to. We already want to hide and be alone with our illness, and why not, since it’s apparently only okay to talk about it once you’ve gotten over it.

    Rawr. Sorry. Touchy subject 😛 I’m only partially recovered, and I may not ever get further, and I don’t think I should have to hide away and not speak my own truth just because of that.

  2. I agree. I think the stories of those currently fighting and in the process of recovery are easier to relate to. It makes me feel less alone in my own recovery to know I’m not the only one messing up… If that makes sense.

  3. Carrie, excellent observation! I think a big factor for those with Ed related illness is that deficit or difference in the individual to see or measure themselves both visually and internally. I have seen this over and over again in my daughters brave struggle. It causes her great distress because she has to ignore her thoughts and impulses that she used to try and gauge how she’s doing. But she has often mentioned how seeing others who are sufferering similarly give her much better perspective. She comments “if they see and feel that way and its not real, Maybe my experience is the same”. Looking at the struggle gives perspective and knowledge. It does very much help to know that those thoughts and feelings are shared even in those who are recovering or even in recovery. I think that some recovery stories sound so removed from the struggle that they offer little persoective except the end result which seems so out of reach to those entrenched in the struggle.
    Thanks again for you brilliant insight !

  4. Well said Carrie. Loved the bomber analogy.

  5. Anne Ria Elding May 28, 2013 at 9:13 am

    Thank you, Carrie!
    I often feel disheartened because I’m a chronic sufferer – with periods of remission in between major relapses.
    I read an article (one of the few I found on chronic eating disorders) and the one thing that helped the women in the case study manage was starting with the premise that she didn’t have to achieve full recovery. Better was praised and celebrated. Just like perfectionists are told that good enough is great; sometimes the message of better should be conveyed more often – especially to mid-life sufferers.

  6. From a research perspective survivor bias is a serious concern yet from a patient perspective it’s complicated.

    There are patients who must believe they could rank among the survivors. Hope is an integral part of their connection to themselves and the world at large.

    There are patients who feel alienated and dismissed because they know they do not rank among the survivors but are surrounded by treatment teams and loved ones who refuse to accept the patient’s innate sense of the progression of his or her condition.

    And then there’s a whole mess of rotation in partial remissions that peak with full remission and hit the valley with relapse, surrounded by even more confused and contradictory inputs from family, friends and treatment teams all the way along as well.

    I have dealt with just as many indignant patients who have been told to accept the chronicity of their condition and the absolute impossibility of remission as I have met patients who simply need someone to hear them say “Enough! Please just help me to be comfortable.”

    Quoting from my own blog post on the topic of remission:”I know of one case where a patient’s primary physician refused to provide a necessary referral to a treatment program because the physician believed it was unethical to give the patient hope for recovery. That physician deemed her untreatable and incapable of attaining any remission.”

    Is she in remission? No. Will she be? Nothing is sure — at least I am sure of that!

    But I do know that denying any treatment is as unethical as forcing treatment (although we had some discussion on the keeps-me-up-at-night complexity on that in your blog post: http://edbites.com/2013/05/treating-severe-and-enduring-anorexia-nervosa-finally-a-bit-of-hope/ as well).

    I just want to let you know how much I appreciate your running these prickly topics up the flag pole. Thank you.

    • Carrie Arnold May 29, 2013 at 10:59 am

      Right- I do think sufferers need stories of hope, but I think we also do the community a disservice by implying (subtly) that these are the only stories there are.

      • i think those of us existing, talking and listening at all are very aware that these stories are over-hyped. i’m not one for conspiracy theories as a rule, however, purposely diminishing women (and men) by creating means in which survivorship, long-term suffering and even the occasional euthanasia in some countries is acceptable. if this were flipped and more men affected than women i suspect the research money would magically appear in the bank accounts needed.

        i’m not okay with surviving. i want healing. the fact that i must screw my head around to accept yet another facet of this shit that i do not want leaves me with only two options i find reasonable. do as the eating disorder wants and not be in such anxiety or continue on with surviving and being in anguish constantly. how is this life?

        i want more and i’ve tried as hard as i know how. there just aren’t people invested enough to care that i do want more. the fact that i am not alone only accentuates my points. this is all very wrong.

        • Carrie Arnold May 29, 2013 at 4:43 pm

          I think both of us are using the term “survivorship” in very different contexts. I’m not talking about just surviving and living with an eating disorder. The medical establishment should be actively doing what they can to help everyone work towards recovery, especially when they want it and seek it out. I’m talking about the larger concept of survivorship bias, which is that we primarily draw research and impressions from those who have “survived” a certain process, whether that’s recovery (they’re recovered or in recovery) or something totally different.

          What I’m suggesting is that we can learn a lot about recovery by talking to people who are still struggling. This doesn’t mean we throw them to the wolves and don’t help them. That’s not it at all. Just that we shouldn’t ignore those who aren’t well and discount the importance of their stories.

          • i did understand your context and i’ve been surviving recovery for about 3 years with every bit of thought and stamina and feeling i can muster.

          • perhaps what i write just reads as if i’m an idiot.

          • Carrie Arnold May 29, 2013 at 5:05 pm

            Okay, I think I understand more of what you mean. And you’re very right- there does need to be better help to get people to move on to the next stage of recovery.

  7. that should read UNACCEPTABLE. apologies.

  8. This links in with the perfection drive. If all I see are amazing people who’ve beaten their ed and I have a less than brilliant day then that feels like failure. Recovery doesn’t have to be perfect along every step. But that’s what comes across from the survivorship stories. Realising it’s not always like the narrative we’re sold is making it easier to see mistakes as just that: mistakes rather than full blown failure and an excuse to relapse completely.
    Carrie is there a link with this and the backlash against the positive thinking survivorship stories in cancer?

    • Carrie Arnold May 30, 2013 at 9:21 am

      There very well could be. I’m not sure- I’m not very familiar with that literature.

  9. So I’m a year late commenting. Thank you for writing this!! I agree so much. Have you found any good related studies?