Do we need better ED role models?

Search for “eating disorders” on Google News, and I guarantee you that over half of the coverage will be about celebrities with EDs. Some of that is our culture’s serious addiction to celebrities that does no one any good. But some of this coverage has to do with celebrities sharing their stories of EDs or other mental health issues. We call it “awareness raising.” Like it or not, when a famous person develops an ED, they become a role model, for better or worse.

The question is whether these types of role models actually help people.

I honestly can’t relate to any of these stories. Maybe it’s that I rarely watch TV (Netflix reruns excepted), and don’t really read fashion magazines, either.* I don’t not feel pressure to be thin, but I knew my looks and my weight were never going to give me a satisfying career. Pop culture is a strange mysterious world to me.

Aside from the fact that the continual association of EDs with fashion and celebrities reinforces the myth that these are vanity issues, I think that we also need a greater diversity of ED role models.

Of course, celebrities aren’t the only people who become ED role models. I struggle a lot with relating to the super-inspirational stories, too. I think it’s great that there are people who love their bodies and never have any ED thoughts. I’m not knocking that. But I personally can’t relate, either. I think my recovery is quite strong despite the fact that I have ED thoughts All. The. Time. They’re not as strong or as intense as they were, and I’m better at redirecting my attention, but, for my own disorder, it doesn’t seem realistic to me to try and ELIMINATE ALL THE THOUGHTS.

My problem isn’t with the existence of these stories and these role models. If they work for you, great. We all narrate our lives differently, and at different points in time. Stories that didn’t resonate with me at one point now seem helpful. Again, there’s nothing wrong with that.

What I object to is two-fold. One, that these stories become sort of instructions for the “right” way to recover. There is no one right way. Two, I have a big problem with the message of “If I can do it, you can too!” I understand the sentiment, but the execution is really problematic. I’m not you. I have different obstacles than you do, and different abilities to overcome them. I read these stories and feel a bit judged. Recovery- ur doing it wrong.

When I was deep in the depths of the ED, these inspirational stories were suggested as potential reading material, as if they could somehow wave their magic wand over my brain and the clusterfuck I’d made of my life and I’d get myself better. Hope is, of course, a crucial component to treatment. But I needed to know how you were supposed to eat when every cell in your body was telling you not to. I needed to know how to stay away from the gym.

I was reminded of these thoughts–had them clarified, in some sense–by an essay in the BBC that appeared this week on this very subject. The author, Mark Brown, wrote

Exceptional figures are important but so too are those with whom we feel real affinity and who can show us practical steps we can take in our own lives.

At a time when experiences of disability are becoming politicised by changes to social security benefits, some feel that inspirational figures drawn from the ranks of celebrity obscure the real challenges faced by disabled people. These challenges include a lack of relationships and money to make sure that life is not just bearable but enriching and enjoyable.

Where the inspirational figure is selected for us, and the gap between their life and ours is too great, the effect is not one of encouragement but of disillusionment – especially if their story is told in terms of personal qualities like bravery or persistence.

Knowing a famous person has the same impairment as you can be reassuring, but only in the vague way that hearing of a successful distant relative is reassuring.

Most of us will never scale Everest, compete for our country at sports or have a showbiz career. This doesn’t mean we’ve failed.

Churchill might tell me something about the art of statecraft, or Fry about the pressures of fame and the joy of words, but someone closer to home, with a life more like mine and challenges more like mine, will tell me far more about a life with mental health difficulty and how best to live it.

I have no problem with people–including celebrities–discussing their eating disorders. I have no problem with people using them as role models in recovery. I do have a problem with the assumption that their experiences are necessarily similar to mine. I don’t need a celebrity. I don’t need someone who has no ED thoughts, ever. I needed someone who had a most imperfect recovery, who somehow cobbled together a way that worked for them. Someone more like me.

What do you think? Do you think that we need better role models for EDs? Share your thoughts in the comments.

 

*I do now, as a professional journalist, but I have a very different focus on what I’m looking for as opposed to your average reader.

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19 Responses to “Do we need better ED role models?”

  1. I think blogs and forums like this one are what a lot of people need. A place where lots of people in lots of different phases of recovery, and with lots of different struggles, can come together and support each other and learn from each other. The people who comment on this site are my role models and heros. You are a role model and a hero for me too. I can find people who are more similar to me here but also learn from the people who are different than me.

    When my therapist wanted to convince me that I had an ed and needed help, she didn’t hand me a magazine- she handed me a slip of paper with your blog address on it. Smart move!

  2. Kristen Holzapfel May 19, 2013 at 12:18 am

    Totally agree with you re: different definitions and experiences of recovery. I have ED thoughts all the time despite having maintained a BMI in the healthy weight range for the last couple of years.

    I really enjoy your blog and appreciate all your fantastic work. 🙂

  3. Perfect timing as ever.
    I’ve just come back from a professional conference where there were a few bottles of wine one night… Anyway, after a lot of talking I realised I wasn’t the only one with an ED or any of the other related issues. These are my colleagues and seniors who I respect and look up to, and they feel like frauds too.
    And they do amazing work. And maybe I can. Maybe, and this is a massive leap, maybe I already do something useful even if it’s not as good as my peers.
    So, yes I need role models. They just have to be for something I believe is important and respect.
    Oh, and I completely second hm’s comments 🙂

    • Maybe I should have made this clearer: what I’ve found helpful is that my role models were people I looked up to for other things and they just happen to have EDs too.
      Also they are not “cured” whatever that means. They still struggle and manage to be respected and useful individuals too.
      It was a massive revelation for me!

  4. It helps me much more to read real experiences from real people who might not be miraculously better, but yes, it’s something I can better relate to. I’ve had so many ‘miracle’ stories thrust my way too, and the ‘If I can, you can’ thing. We are all so different. Some of my friends have at times, made it clear that they don’t understand why, if they could overcome their own problems and get better, or achieve something that I’m finding hard, why I can’t just ‘do it’. because it’s not that hard – they did it after all. For example, cognitive ability – it’s something I REALLY struggle with – but I have a couple of friends who despite their own ed’s get on fine cognitively. So they think I’m making excuses or too scared when I try to explain why I find it so difficult to do things like read or concentrate or study. I have friends who just decided they were going to put on the weight and get better, who can’t understand why I can’t just do that too. I wish I could.
    I know that it’s never as simple as it looks though. Most of these people I’ve mentioned above, might appear to me to have had a simple path to their own recovery or achievements, but I have only seen a tiny bit of the outside view. I don’t have their lives, and most likely it was anything but easy for them too, and if I was better and someone gave them my own life as an example of what they ‘could do’ they wouldn’t at all be able to relate either.
    I don’t relate to celebrities mostly because it’s hard to take claims of celebrity eating disorders seriously. They just have to lose or gain a little bit of weight and the media is plastered with “star’s bingeing hell” or “Star wasting away!” etc. And when they do come out with their stories, often they only tell select parts of it, and it’s scrubbed clean for the public consumption. Or it’s years after they struggled, but when they ARE struggling, they will deny it, which sends the message that having an ED is something to be ashamed of.
    Also, celebrities have access to so much more support than the every day person will ever have.
    I also don’t relate to the assumption that it’s all about weight and appearance that is stronger, I think, for celebrities, because that’s a huge part of what their fame revolves around. I feel like people assume even more that my own problem is one of vanity if they are more familiar with celebrities having an ED than with everyday people.
    I like the idea of mentors in the community, where someone who has been on their own ED path and is close to recovery or in a much better place, mentors someone who is struggling a lot more – as long as they are both in a good frame of mind and not triggered by each other, it can help to have someone who you know hasn’t had an easy time, but has managed to hold on despite it all, and feels that it’s been worth it.
    Hope any of this makes sense.

    • “I don’t relate to celebrities mostly because it’s hard to take claims of celebrity eating disorders seriously. They just have to lose or gain a little bit of weight and the media is plastered with ‘star’s bingeing hell’ or ‘Star wasting away!’ etc. And when they do come out with their stories, often they only tell select parts of it, and it’s scrubbed clean for the public consumption. Or it’s years after they struggled, but when they ARE struggling, they will deny it, which sends the message that having an ED is something to be ashamed of.
      Also, celebrities have access to so much more support than the every day person will ever have.
      I also don’t relate to the assumption that it’s all about weight and appearance that is stronger, I think, for celebrities, because that’s a huge part of what their fame revolves around. I feel like people assume even more that my own problem is one of vanity if they are more familiar with celebrities having an ED than with everyday people.”

      ***

      These are all brilliant points, Fiona. I totally agree.

  5. “If I can do it, you can too!”. Probably one of the least helpful things I’ve heard. In my head it gets translated to “You’re obviously not trying hard enough”. Despite knowing it usually comes from a well-meaning, caring and encouraging place, it still feels judgmental.

    Sentiments like this have a similar effect on me as do the endless positive affirmations bandied about. Claiming to banish negative energy and increase well-being, well, I just find it all rather abstract..and frustrating.

    What works is what works for you. As you rightly point out, Carrie, that’s not going to be the same for everyone.

    “..inspirational stories were suggested as potential reading material, as if they could somehow wave their magic wand over my brain and the clusterfuck I’d made of my life and I’d get myself better.”
    Yes yes! This takes me back to my most recent inpatient stay when the doctor sat me down and proceeded on a detailed monologue about the very many patients he had cured..and how he was 100% sure that he could cure me too. My thoughts at the time were that he had obviously left any scrap of reality at the door and entered some perfect dream world within which I sadly, did not reside!
    Apart from the fact that at that point in time, a “cure” was the most frightening prospect to be faced with. Hell, I just wanted to tiptoe back to some stability not be sky-rocketed to some superficial “cured” state. Suffice to say I left that meeting at the peaks of anxiety and with a strong compulsion to find the nearest bathroom. Perhaps it was the bull-in-a-china-shop way he went about it that made it so ineffective? Maybe he thought he was taking some of the pressure off me, when actually he was piling it on and giving me a seemingly impossible standard to aim for.

    Regarding the celebrity angle, I imagine that for some it is helpful to see these figures in the public eye, whom they may hold in high esteem “proving” that recovery can be achieved. For others (myself included), it is not. Again, we’re all different. I have no interest in celebrity, so it is not hard for me to avoid the latest ed “outing” and such.

    Oh yes, and I’d like to third what hm had to say on the subject!

    It’s not possible to avoid all those well-meaning but frustrating sentiments and, if I were a better person (like, a saint or something!), I’d just let them slide, like water off a duck’s back. So, for now, I guess expending as little as possible energy on the inevitable frustration that rises up inside me is the way forward.

  6. I am very cynical of celebrity ED stories. It seems like anyone who has loser weight by restricting their food labels it as an ED…it’s not. True ED’s are about the mental anguish associated with eating and exercising and perfection. Celebrities who skip lunch before a photoshoot do not have ED’s!

    I personally want to find a way to impact other people who struggle with anorexia, but I haven’t found my voice or my forum yet. I want to share my experiences and let others know that they are not alone and they aren’t crazy. I had many moments when I felt like I must be the only person who has ever felt this way, but I’m not…it just didn’t have any other people like me to talk to.

  7. Anne Ria Elding May 19, 2013 at 8:37 am

    I don’t look to the celebrities and people in the news are role models. I agree – I don’t relate to their world at all. Being able to afford (in money and time) why they could devote to recovery is beyond my ken. I also agree the hearing “I recovered, so can you” is completely demotivating and annoying.

    But, I appreciate the people who can garner publicity stepping up and speaking out. For whatever reason, their voices ring louder in the ears of others to bring attention to what eds are and that it is a problem – and for me the more “out of the ordinary” the better – Ms. Quinn of NYC (women in politics), Ashley Hamilton (men get eds too.)

  8. I’m kind of on the fence with this one…

    Celebs who speak out about their past with eating disorders usually still look too thin and fake to me thanks to their personal trainers and beauty staff. The Hollywood scene in general will never be a good role model or inspiration for me.

    However, I do appreciate encouragement and stories of hope from others. People with EDs are often the only people I can truly relate to even if our stories aren’t exactly the same. No, my ED thoughts have not completely disappeared and I don’t always love my body, but like you said, it’s a hell of a lot better than it used to be. I usually don’t care if I am listening to a “super inspirational, life is great” type story or a “lifelong struggle, recovery is a bitch” story… They are all stories of hope to me.

    I think the main thing is to remember the INDIVIDUAL component involved in treatment. Great post – You’re always making me think.

  9. You wrote: “When I was deep in the depths of the ED, these inspirational stories were suggested as potential reading material, as if they could somehow wave their magic wand over my brain and the clusterfuck I’d made of my life and I’d get myself better. Hope is, of course, a crucial component to treatment. But I needed to know how you were supposed to eat when every cell in your body was telling you not to. I needed to know how to stay away from the gym.”

    I totally and completely agree with this- as much as it was somewhat inspiring to hear these stories of “perfect recovery” before and when I was in treatment, I felt woefully unable to actually translate the stories into action for myself- which actually sometimes made me feel worse because I wasn’t able, at the time, to reach this pinnacle of wellness that everyone was telling me I had to reach! I have since come to appreciate stories that reflect a variety of paths to recovery, and that remind me that recovery is not some end point that wraps up perfectly in a bow. However, I think I feel differently now than I did in earlier recovery about the stories that inspire me; I think that back then I maybe needed to see/hear stories that told me “you can recover!” despite my inability to actually put any of the rhetoric into practice. Now that I personally feel more recovered, I am better able to entertain the ambiguity of recovery and admit that there might not be such a thing as perfect recovery. Resultantly, I’m a lot more likely to share my own story now, and to be conscious to not make it seem easy and perfect; it just wasn’t/isn’t. I’m always happy to hear about the very different experiences of others in recovery/recovered, and I actually think it’s really interesting when they differ from my own. I think we need a wider representation of individuals sharing their stories, to reflect the diversity of eating disorders and recovery.

  10. Women (and I say women because women are statistically more likely to have AN or BN) need better role models, full stop.

    This is a massive generalisation, but, women are force fed a diet of celebrity and so look up to celebrities.

    Perhaps if people from a vast range of occupations, lifestyles and backgrounds were put on pedestals, rather than just the rich, white and ‘good looking’, we might have better ED role models.

    Personally, I don’t look to ‘celebrities’ as role models because that’s not in line with my values. I wonder if most people could even identify their values? I actively seek out people who I identify with and who challenge my perceptions and make me think and inspire me to work hard and study hard and keep my passion burning. Therefore I’m going to look for similar people as ‘ED role models’. I am really inspired by you, Carrie. And also Tetyana at Science of EDs! I’m studying science at uni so I connect with that and I love that your blog and book make me think critically and deeply, I feel like I always learn something or see a point of view I didn’t think of when I read your writing.

    So, I suppose my point is that some people are satisfied with being inspired by people who have ‘a totez hot tan and bikini bod’ or the warm and fuzzy, easy to read story of ‘yay, everything is totally great and loved up now’. And some people are not satisfied with that and will seek out something more.

    I try to be non-judgmental of people who are interested in celebrities, or things I think are vapid and shallow, I really do. But I do wish more people were unsatisfied with being spoon fed rubbish.

    • I’m also dubious of the ‘oh, I’m totally 100% fine with food now’. That hasn’t been the reality for my recovery and it’s good to be able to read about people who I look up to admitting that they still manage their ED thoughts etc but are able to get on with things and be healthy.

      I suppose it’s more palatable for the media to pretend to be 100% recovered, whatever that is. Though, what is really real about the persona that is presented to the public when it comes to ‘celebrity’? The whole thing seems fake and strange.

  11. Another problem is that a lot of these celebrities claim to be fully recovered when they’re not even close, setting a bad example for others who might not feel the need to try going ‘all the way’ in their recovery based on what they’re seeing around them.

  12. Robin McKenzie May 20, 2013 at 9:04 am

    When I was in IP for twelve weeks I started out with this really positive attitude. I was determined to be the best patient in recovery (typical all or nothing mentality). However, around the eighth week I had enough of it. I was reading books about recovery of celebrities and one with the theme “I did it so can you”. These books made no mention of setbacks nor, how to get back on track. They simply confirmed that I was a failure. Worst of all, the family therapist would report to my husband about all the ways I was acting on my symptoms. She would then tell me not to get too comfortable with the state of mind I was in, as if I could control this free fall into relapse.
    It took my outpatient therapist and reading ED Bites and all the comments to realize that their is no perfect recovery. Lifting this burden of guilt has made it possible to continue on this journey.

  13. For me, there are at least two more issues with celebrities as recovery role models.

    1. The painful, frustrating, and tedious aspects of treatment are so often glossed over. I’m happy that X young celeb went to Y posh treatment center and is now fully recovered from her disorder, but for many more sufferers the reality is so much more complicated. The juicy tell-all cover stories make no mention of the difficulties in finding, paying for, and staying in treatment that many, many of us face. I think, too, that these stories tend to shy away from discussing the most basic challenge of recovery (at least from anorexia) – EATING. That is what I struggled with on a day-to-day basis in my recovery from anorexia, not learning to “accept myself” or “love my body” or whatever vague ingredient celebrity X has cited as necessary for her recovery.

    2. I’m skeptical that a professional model or actress can achieve full recovery and maintain her career. For me, anyway, a celebrity lifestyle (not to mention a female-celebrity physique) would not be compatible with good health. It seems doubtful to me that young women who need to maintain a certain body size in order to get work can truly be in recovery from an eating disorder. These women are entitled to make their own choices, of course, and I wish them well…but I can’t see them as good role models for the average sufferer.

  14. I’m sure this is really judgemental of me, but I actually find most celeb ED recovery stories incredibly UNhelpful. This is because usually, when they come out with their experiences and claim to be recovered, they are often still much, much thinner than the average woman, perfect skin, big lucious hair, etc. Now, this isn’t true 100% of the time, but most of the time. Often they look exactly the same weight as they were during the time frame they were ill, or maybe look 5-10 pounds heavier. I know it is not for me to say what constitutes recovery for someone else. But for me and almost everyone I know personally who has struggled with an ED, at least some component of recovery means eventually settling at a higher weight than you’d like, and for a lot of us it has taken a toll on some aspect of our bodies in some ways. Seeing women who are still size 0-2 (size 4 at most) and are advertising things on billboards or gracing the covers of magazines say they are totally recovered from anorexia used to be (before I decided not to think about it any more) incredibly triggering and upsetting to me. I felt like a failure because for me, recovery has had to mean ending up at a higher weight than I’d been in my life. It means I will never be “super-skinny” again, without having relapsed. It has taken a (possibly permanent) toll on my hair, skin, nails, face. I will never look like a Hollywood star or supermodel, and I was actually always OK with that. But when some of these Hollywood stars say they struggled with the same illness as me and they still get to be size zero and perfect-looking, that hurts! It’s like it’s only acceptable to come out as having an ED as a celeb if you’re still super thin and flawless-looking. If you’ve gained weight in recovery (as a very few celebs have) to the extent that you are of average or above weight, you get stories saying how fat you are. I hope this makes sense? It means that I will avoid Hollywood ED recovery stories like the plague, because they make me feel way more insecure than regular Hollywood spreads. One celeb in particular (who I won’t name) who came out a year or so ago to say she was bulimic at the very height of her success but is now recovered was still then, and is still now, at a weight that neither I nor any ED sufferer I know, would ever have been let out of a treatment center at. It would have been considered a completely unacceptable target weight for any of us. I know that there are exceptions to every rule, and everyone’s recovery is there own business, but it’s why I won’t read those stories any more.

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    […] eating disorder community loves personal narratives (especially of celebrities). Generally, the research and advocacy community prefers narratives of people who are well–or […]