This is a follow-up to my last post on what I think can be improved in how we talk about eating disorders in the media and in ED communities. If you haven’t read my last post, I strongly recommend doing so before reading this one. My focus in this post will be on what individuals with a history of EDs and ED organizations can do to improve how eating disorders are perceived by the general public.
(Sidenote on my last post: I feel I didn’t emphasize enough that I used Emma Woolf’s quote as an example and a starting point. I’m confident I’ve made the same blunders that I am now speaking about. It is okay. I think the important thing is to think about our future actions, as opposed to dwelling on the past. My goal isn’t to single anyone out. Woolf is not the first, the last, or the only person to have said things of that nature–her quote was just on my mind since I saw it just a few days ago on tumblr.)
FIRST, FOR THOSE OF US WITH ED HISTORIES, this is what I think we should be AWARE of when we are speaking up about EATING DISORDERS TO THE PUBLIC.
This isn’t a comprehensive list–if you do feel I’m missing something important, please leave a comment! (I love comments.)
1. Often, we talk about how little we ate, how little we weighed (and share a photo), or how often we binged and/or purged at our worst.
(I’m not off the hook, I’ve done this too.) Think hard about why you are doing this. Is it relevant? Is it necessary? What’s the purpose of the information? It can do more harm than good.
I don’t mean that it can trigger someone (it can, but that’s not what I’m getting at here).
- It can send the wrong message to sufferers that (1) they are not sick enough, (2) that they don’t deserve treatment, or worse (3) that they are not going to face the medical complications because they eat more, weight more, or binge/purge less.
- It can send the wrong message to the public that someone with a “real” eating disorder eats x amount of calories, or weights x amount of pounds. If not, their eating disorder isn’t real, they are exaggerating or seeking attention.
- It can send a wrong message to doctors, nurses, and healthcare professionals about what patients with EDs “look like” (ie, what their symptoms/behaviours are).
I think when people write about numbers or frequencies of behaviours, they do so, at least in part, out of insecurity. In the past, when I’ve used numbers in relation to my ED, it was often (but not always) because I was insecure about the validity of eating disorder–I felt I had to prove that I really did have one. Believe me, I know I look healthy now, but I really was sick. I used to eat this little, and throw up this much.
That’s not always the case–sometimes numbers are important. I use them when I blog if the information is relevant to the issue (say, resumption of menstrual periods). It is okay to talk about these things in private conversations, too. But I think when the information is out there for the broader public, we need to be more careful and more thoughtful about the messages we are sending, and why we feel the need to share certain information, especially if we want diagnoses like EDNOS to be taken seriously.
I think we should adopt this kind of attitude:
There are questions she won’t answer. Alexis Katchuk won’t tell you, for instance, how much she weighed at the lowest point in her 12-year battle with anorexia. That number is dangerous: Katchuk doesn’t want others who are fighting the disease to see it and falsely believe they’re OK if they weigh more than she did. She won’t tell you how much she did or did not eat, either. She’s not interested in comparing calorie counts, she said, adding that those suffering from eating disorders tend to get into weight and diet competitions. (Source)
2. Often, we talk about what eating disorders are about, what they mean, and what qualities individuals with EDs have.
Most of the time, I think this is okay–we know that individuals with EDs tend to be more perfectionistic, for example. I think when it can get into dangerous territory is when we make blanket statements–statements that are not scientific and not supported by evidence–about what EDs are about and what patients with EDs are like.
We need to remember that our personal narratives are just that, personal. Writing “for me,” or “I think,” will do wonders for statements that are personal to your eating disorder.
Not everyone’s eating disorder is about control, not everyone experiences body image issues or is afraid of gaining weight (I often had no body image issues and no fear of weight gain), not everyone feels their eating disorder made them immature, not everyone’s eating disorder was “triggered” by models, magazines, trauma, or sexual assault. I’ve met people who felt their eating disorders weren’t real because their families were amazing and they didn’t experience trauma.
I think it is completely fine to talk about our personal stories, important even, because we are all different. But, we should not engage in a battle about what “real” eating disorders is, and symptoms and behaviours “real” ED patients have, particularly when these discussions are removed from eating disorder research. This doesn’t help sufferers, the public, or healthcare professionals.
SECOND, THERE ARE TWO MAIN THINGS I WISH TO SEE FROM ED AWARENESS ORGANIZATIONS.
And I’m NOT singling anyone out–some organizations are better than others, this is a general “wish list” of sorts.
1. Less focus on body image, dieting, and the media.
Yes, dieting is a risk-factor for EDs (and drinking alcohol is to alcoholism), but only a small portion of individuals who diet go on to develop eating disorders. Why? Not because they are vain, naive, or shallow. It is likely because they are genetically predisposed to find restricting (or bingeing/purging, though this often develops after attempts at restricting) calming or anxiety-reducing. Studies have shown that genetics explains 50-70% of the variability we see in eating disorder behaviour. Eating disorder are much more common in families and relatives of eating disorder sufferers, as are comorbidities such as anxiety and depression.
I realize you can’t have a prevention campaign centred around genetic predispositions, and dieting IS a risk factor we can potentially prevent. It is true, we can’t change our genetic make-up but we can reduce the prevalence of dieting and disordered eating attitudes.
Still–we need to be honest about what causes eating disorders, because overemphasis on body image, dieting, and the media sends a message to the public that those are the sole causes of eating disorders, and we know they aren’t. See here, here, here, here, here, and here. Oh actually, this, and this, and this too. To be honest, this entire blog is dedicated to unravelling the complex factors that cause eating disorders with an attempt to focus on things that aren’t commonly talked about.
2. More focus on eating disorder research that is not dumbed down to the point of being meaningless.
For example, this is taken from the National Eating Disorders Association (NEDA) website:
Scientists are still researching possible biochemical or biological causes of eating disorders. In some individuals with eating disorders, certain chemicals in the brain that control hunger, appetite, and digestion have been found to be unbalanced. The exact meaning and implications of these imbalances remain under investigation.
Wrong. Unbalanced? Did you know there’s no such thing as a chemical imbalance and it is actually not that hard to explain some of the research that we do know about? Yes, it takes a lot more effort, I know. I find it rather difficult to explain concepts like heritability. I don’t think I’ve ever talked about alternative splicing, and briefly mentioned epigenetics and alleles. Yeah, it is hard, but it is possible to explain these concepts without having to over-simplify to the point of being wrong.
And since starting this blog, I’ve learned that people are hungry (no pun intended) for information. They want to know what’s going on in their brains, their son’s or daughter’s brains, or the brains of their loved ones.
To be fair, the bullet point below the one I quoted is significantly better. I’m also glad to see them even mention biological factors, since I think it is completely, or almost entirely missing from the National Eating Disorders Information Centre (NEDIC) website (that’s kind-of our Canadian equivalent).
In any case, this is my wishlist for things I’d like to see in the future. I’m not blaming anyone or pointing fingers, believe me, I’ve made these mistakes too.
Let’s stop propagating the myths that surround eating disorders, together, because ultimately, that’s what we’d all like to see, right? I think it will improve healthcare services, decrease stigma, and help with prevention, too.
I’ll return to blogging about peer-reviewed research in my next post. (Warning, there might be a longer than usual break between posts because I have to prepare for my final committee meeting next week.)
What’s on your wishlist when it comes to what you want to see more of from individuals and organizations who do eating disorder advocate or awareness work?
You are so right in your criticism of how eating disorders are portrayed in the media. I think that organisations that are there to support eating disorders should be leading the way.
This gem comes from the website of the leading eating disorder support group in Australia.
“In light of the stress and confusion that accompanies the period of adolescence, it is little surprise that an individual may struggle to deal with the whirlwind of change, uncertainty and often low self esteem. Eating disorders are very often a coping mechanism for people to attempt to gain control of their situation when they feel helpless in the face of other aspects of their life. When this quest for control goes too far, the risk of developing an eating disorder dramatically increased.”
As a parent caring for a child who has been struggling for 3 years with a life threatening disease, it is so frustrating that this is repeated over and over. The lottery by location for treatment in this country is unlikely to change unless we can get the message out.
Bronwen, thank you for your comment. I completely agree that ED organizations should be leading the way. I want to see more information about the multifaceted causes of eating disorders, as opposed to one-sided and narrow explanations of causality. Sure, we don’t know what causes them, but we know a hell of a lot more than some organizations portray about the risk factors for EDs.
I have almost no knowledge of how health care is structured in Australia. (I am aware of FED-UP NSW Health, but outside of that, I don’t know much.) What exactly do you mean by this “The lottery by location for treatment in this country is unlikely to change unless we can get the message out”?
Thanks again, and I hope the best for your child’s recovery.
Tetyana
(PS. I have a bunch of papers on parents/caregivers of ED patients on the back-burner–too many papers, too little time! I also think it is a topic that’s often missed when EDs are discussed in the media.)
Sorry Tetyana I didn’t make myself very clear. The FED-UP NSW Health campaign is representative of a nationwide issue with ED treatment in Australia. There is a shortage of beds, probably worst in NSW but the beds are allocated depending on where patients live. Some areas have quite good services whilst others have very little or none. This means even if you are prepared to travel long distances to get what would seem to be the most appropriate treatment for an individual it will not be available to you. Which comes back to your point about how media portrays ED, and its treatment. A lot of time is spent rehashing the same old stories of “women dying to be thin”, and “anorexia is all about control”. Little space is given to looking at things that may actually help sufferers such as access to care. The coverage of eating disorders other than anorexia is almost non-existent.
Oh I see, thanks for the clarification. I’m actually not sure how it works across Canada. I don’t know anyone who has gotten treatment out of province, but I know people who have gone to the US, and it was covered by Ontario’s health insurance plan. Though I’ve been told it is MUCH harder to get it covered now than it was a few years ago.
And I completely, wholeheartedly agree with this, 10000%:
“A lot of time is spent rehashing the same old stories of “women dying to be thin”, and “anorexia is all about control”. Little space is given to looking at things that may actually help sufferers such as access to care. The coverage of eating disorders other than anorexia is almost non-existent.”
Excellent post! I particularly agree with not mentioning numbers or frequencies of behaviours. In public discussion, I don’t freely offer information on my own lowest weight or most amount of times I purged in a week. I do so deliberately, not out of shame of what I used to do, but because I don’t want to be part of the perpetuation of, ‘You don’t weigh little enough, so you’re not a valid ED sufferer.’
Whilst I no longer need the validation of other people’s shock at my weight to know that I had a serious disorder, I know that people unfamiliar with them may focus on the weight aspect because it’s what they are exposed to most. The best I can do is foster a focus on the other factors, such as the emotions I was struggling to deal with and displacing whilst I had an ED. It doesn’t matter what I weighed – I still had anorexia.
I haven’t always been able to think like this, though. When I still had an ED (I’m firmly in recovery/recovered), my weight was so entirely important to me. Part of it was the ‘ED mindset’ for lack of a better term, whilst some was reinforced by professionals. Not through any fault of their own, I must stress, but it had a negative effect just the same. The first time I went for treatment, the service could only offer me 3 weeks of brief intervention, because they had limited resources and could only treat people under BMI X, and so I didn’t fit the criteria at the time. So in my mind, ‘I wasn’t sick enough.’
A year later, things had gotten worse and I met their threshold and actually got treatment. So it saddens me that it wasn’t even the misguided beliefs of the staff that enforced the role of weight to me, it was a simple lack of funding for their service.
Rian, same to you: excellent comment!
I love that people who comment on my posts are so much more eloquent and succinct in explaining what I try to do distil in my posts! It is really amazing, actually.
“The best I can do is foster a focus on the other factors, such as the emotions I was struggling to deal with and displacing whilst I had an ED. It doesn’t matter what I weighed – I still had anorexia.” Exactly!
I also didn’t always think like this. Shocking people with how little I weighed, how little I ate, or how much I could eat and throw-up was something I’ve definitely done in the past (though, thankfully, mostly in private conversations). Nonetheless, I do wonder what message I sent to them (though given how “functional” I was, I think it was in the context of “hey, look, I was so sick, but I still finished my degree on time, etc..).
“Part of it was the ‘ED mindset’ for lack of a better term, whilst some was reinforced by professionals. Not through any fault of their own, I must stress, but it had a negative effect just the same. The first time I went for treatment, the service could only offer me 3 weeks of brief intervention, because they had limited resources and could only treat people under BMI X, and so I didn’t fit the criteria at the time. So in my mind, ‘I wasn’t sick enough.’”
This is a HUGE problem in my opinion. The fact that there is a weight criteria for anorexia nervosa is, ugh, it annoys me. It reiterates the same harmful message but now mostly to professionals and health care providers (and insurance companies, where applicable). Dangerous stuff.
I omitted this out of the post, but when I first went to my doctor to get a referral (I initiated treatment at 14 by myself pretty much) he didn’t think I was sick enough and procrastinated on the referral for months. I had to get another doctor with the help of a guidance counsellor in my school, who referred me within a few days. When I went to my first doctor, I didn’t lose much weight (but I knew things were getting worse, mentally), but sure enough, by the time I actually got to the ED unit, I had lost enough weight to diagnosed with anorexia. I don’t want to over-diagnose everyone and just because someone thinks they have X or Y doesn’t mean they do. Still, eating disorders are mental disorders, and weight loss is just one of the symptoms, and not such an important one.
Why are we waiting for people to get really sick before treating them when we know the earlier we start treatment, the better the chances of recovery??
Hah, I was the same in terms of being a very ‘functional’ ED sufferer. At my worst point I had little to call a life since I had no hobbies, interests or passion because of my condition, but I still maintained my academic progress at uni. Still, anyone I actually talked to about the truth of my ED knew how bad things really were for me mentally.
The issue of weight loss being such a key diagnostic criteria can be worrying. I see where it comes from, because otherwise dieting could be misdiagnosed, but you can be any weight and have anorexia or anything other ED. I had anorexia before BMI X – I just hadn’t had it long enough to get there yet.
Speaking of diagnoses, numbers and weight became more important to me at the outset of recovery because up to that point, I’d had no regular access to weighing scales. But suddenly, I was being weighed every week and it freaked me out. Not to mention the BMI threshold for ‘anorexia nervosa’ and ‘severe anorexia nervosa’ which I was now aware of. That was a major sticking point in my treatment – I was too anxious to leave the latter category because ‘my label would change’. In the ED mindset, it’s like proof that you’re finally valid, and it’s dangerous. But that’s just my personal experience.
I’m impressed that you initiated treatment by yourself! When I first went for the ‘brief intervention’, I was cajoled into going. It was a year later I went back voluntarily because I then met the criteria for treatment and I knew that my family would force into treatment if I didn’t go, so I thought I might as well go willingly!
I agree with you that the main issue with the weight criteria is professionals trying to avoid over-diagnosing people. With ‘typical’ weight loss through dieting, there might be self-esteem issues or body image issues, but it doesn’t ‘reach the leve’ of an ED, for lack of a better term. So it’s tricky for professionals to tease apart one set of issues from the other in initial assessment. Hmm, it might be worth researching dieters vs ED sufferers so we can finally have some evidence saying that ED sufferers are not just vain dieters who went too far.
I do find it quite maddening that I had to wait until I got so much worse before any full treatment could have been offered to me. But the mental health services in the UK are under-funded and under-staffed, so they simply didn’t have the resources. They had to prioritise those who were most in need of help in the immediate timeframe, and I don’t hold that against them. They were doing their best with limited resources, and I’d have had to make the same call in their position.
Rian
Hey Rian, lots of things to address in your comment!
“Speaking of diagnoses, numbers and weight became more important to me at the outset of recovery because up to that point, I’d had no regular access to weighing scales. But suddenly, I was being weighed every week and it freaked me out. Not to mention the BMI threshold for ‘anorexia nervosa’ and ‘severe anorexia nervosa’ which I was now aware of. That was a major sticking point in my treatment – I was too anxious to leave the latter category because ‘my label would change’. In the ED mindset, it’s like proof that you’re finally valid, and it’s dangerous. But that’s just my personal experience.”
I had a similar experience. I never owned a scale and so I didn’t even know my weight until I got diagnosed. (I have always been more into calorie counting. I wanted to know how much I consumed, not how much I weighed.) I think a lot of people experience what you did when they pass the “BMI threshold” and also, for women, when they resume menses (if they had lost them, and if they didn’t, they tend to often feel they ED wasn’t real). I definitely felt that way when I resumed my menses
“I’m impressed that you initiated treatment by yourself! When I first went for the ‘brief intervention’, I was cajoled into going. It was a year later I went back voluntarily because I then met the criteria for treatment and I knew that my family would force into treatment if I didn’t go, so I thought I might as well go willingly!”
My parents didn’t know what eating disorders were (they didn’t “exist” in the former Soviet Union). I hid parts of my treatment from one of my family members who made it really difficult and denied (and still denies) I had an ED. So, it was basically just me. My other parent is supportive but very hands-off. I don’t think they knew what to do, and I was always a very independent and rational child, so they thought I’d figure it out. (Unfortunately, rationality and knowledge about eating disorders doesn’t lead to some miraculous cure. I knew what was happening, but I couldn’t stop.)
“I agree with you that the main issue with the weight criteria is professionals trying to avoid over-diagnosing people. With ‘typical’ weight loss through dieting, there might be self-esteem issues or body image issues, but it doesn’t ‘reach the leve’ of an ED, for lack of a better term. So it’s tricky for professionals to tease apart one set of issues from the other in initial assessment. Hmm, it might be worth researching dieters vs ED sufferers so we can finally have some evidence saying that ED sufferers are not just vain dieters who went too far.”
I don’t think the difference between dieters versus ED sufferers is murky, actually. Dieters try to decrease their intake and restrict, and they mostly fail because they find they can’t do it. It is not compulsive. In AN, it is compulsive, it is a desire, a drive to restrict–it is difficult for them to eat more. The anxiety experienced by someone with AN who eats is not the same as the anxiety of someone who screws up their diet. I think it is true for BN, too. Bingeing and purging is also very compulsive. For me, it had nothing to do with eating what I wanted and purging to stay thin. I didn’t want to b/p when I felt fine. It was always in response to anxiety, for me, or some kind of feeling of “not being okay”. Purging was ridiculously anxiolytic, the whole process actually was anxiolytic. Not unlike benzos or weed, actually.
I think that’s the main difference, in eating disorders the behavious become compulsive, but that’s not true in dieters who often struggle or have to exert a lot of self-control to maintain the diet. For me, it takes a lot of effort NOT to restrict. I fall into restriction if I get too lax.
It’s part of what makes recovery so difficult for many people – there are constant milestones that are gradually being worked toward, and focusing on those can be a very anxiety inducing experience. It was for me, at least. I know that if I’d been female, the menses would have been a huge deal.
Your comment about rationality and knowledge not being related to dealing with an ED rings very true for me. In most of my life, I’m independent, driven and rational. But when it came to food, my rationality just didn’t seem to matter. My parents differed in their responses to my recovery. One was very laidback and easy to talk to, the other I couldn’t talk to in depth because it upset them too much. I’d also get quizzed on my food intake as soon as they were home from work, which my independent side found frustrating, but I understand that it was only out of concern.
I agree with you on the differences being the compulsions and the anxiolytic effects of ED behaviours distinguishing it from dieting. My worst bouts were always in response to stress of some kind. But of course, those of us who’ve had experience with it will know that – what I refer to is the misconception in the media of the diet industry causing eating disorders. In popular culture, an ED is often seen as an extreme diet or ‘lifestyle’, so they’re too entangled. Nobody really seems to tease the two things apart as not part of the same thing, but distinct issues.
Speaking of which, I came an across an article earlier today from MGEDT. It focused on weight, calories, skimmed over the emotional turmoil and then cited increasing pressure to be thin. It basically had the hallmarks of everything you’ve pointed out as not helpful. At least it was a recovery focused piece, but as usual, was woefully lacking in any sort of information about recovery.
“Your comment about rationality and knowledge not being related to dealing with an ED rings very true for me. In most of my life, I’m independent, driven and rational. But when it came to food, my rationality just didn’t seem to matter.”
It is terrifying, honestly. I think of myself a skeptic, and I really value rationality and critical thinking, so being so absolutely irrational when it came to the eating disorder was very shameful because it was clearly so hypocritical of me. And yet, the anxiety and the emotions overruled the rational thoughts, when I was sick, anyway.
“I agree with you on the differences being the compulsions and the anxiolytic effects of ED behaviours distinguishing it from dieting. My worst bouts were always in response to stress of some kind. But of course, those of us who’ve had experience with it will know that – what I refer to is the misconception in the media of the diet industry causing eating disorders. In popular culture, an ED is often seen as an extreme diet or ‘lifestyle’, so they’re too entangled. Nobody really seems to tease the two things apart as not part of the same thing, but distinct issues.”
Definitely, 100% agree.
Re MGEDT: Can’t always be perfect :/ It might be easy for me to sit here and critique it because my goal isn’t so much to raise awareness about eating disorders but provide scientific information and research about eating disorders to those who are already interested. In that sense, it is easier for me, so while I really do hope in the future the public discourse on eating disorders moves away from the sociocultural explanation (which really doesn’t hold up to the evidence, in my opinion), I suppose from the standpoint of MGEDT, raising awareness about the fact that men have eating disorders is the first step.
Re: Re MGEDT. No, it’s not always going to be perfect, and I do agree that raising awareness is the first step. Once a problem is recognised, then we can delve into it further. But to do that, people have to be aware of its existence in the first place.
“But I think when the information is out there for the broader public, we need to be more careful and more thoughtful about the messages we are sending, and why we feel the need to share certain information, especially if we want diagnoses like EDNOS to be taken seriously.”
Exactly this! It is incredibly important for people to understand the implications of sharing numbers and/or frequencies of behaviour in a public forum. I completely agree that this can be done in an almost defensive manner (and I’m sure that I have fallen into this pitfall myself in the past). However, thinking about the consequences of such messages on those who perceive themselves to be “not sick enough” to seek treatment (or even physicians who might perceive certain people as “sick enough” based on their limited experience with EDs, but of course to mention that is to open a whole new bag of worms…) is so key. Disturbingly, these messages, particularly “typing” individuals into categories based on diagnosis (ie. assuming that all people with anorexia are perfectionists) is highly prevalent in some of the academic literature, as well. While I understand attempting to define certain characteristics of those with eating disorders in an attempt to intervene early/focus on prevention, I think that too often a direct causal link is attributed to certain personality characteristics and eating disorders. This holds true for body image/media discourses as well- I’ve seen some dreadful articles that purport to have “solved” the debate about what causes eating disorders, talking about media representations of thin women. I mean, really? If it were only that simple…
Anyway, thanks for writing the follow up (and for letting me know about it via twitter!)
Andrea, I completely agree with you! I think you have written what I wanted to say much more eloquently than I have in the post above! Thank you!
As you said, I really think we need to differentiate between target audiences. I can be pretty graphic amongst my friends. I think there’s a time and place for that, and why I think some communities that are, on the whole, ambivalent about recovery, exist, because it provides a space for people to openly communicate about eating disorders without feeling they are being judged or worrying about the bigger consequences.
There is a big difference between that and how we should talk about eating disorders in the public sphere, I think. That’s because when we are talking amongst ourselves, there is implicit understanding that we “get it.” It is a kind of “safe space” where people don’t have to explain everything ad nauseum. That’s not true when we talk to people who have no (or limited) understanding of eating disorders. Jokes about the day-to-day life of someone with bulimia are no longer funny, but come across as being wasteful, unappreciative (the food! the money!) and all that kind of stuff.
Thanks for the comment, and glad you liked the posts!
I do not read much fictional and autobiographical books at all. Those that I have though and which has spoken to me has been books/memoirs by people who have been through similar things as me etc and came through it. I have a longstanding ED. Through their often raw accounts I can see that yes they have been through that and come out the other side.
There is one book on my mind and it’s pretty graphic. At times a bit too graphic for me but not for some of my friends who found it inspirational. The book showed that recovery from severe chronic ed was possible for them and gave others a bit of hope also.
I don’t know if a more restrained account would have had the same impact on me.
missr, thank you for your comment. I think you bring up a good point here. I agree with you that sometimes having a restrained account would’ve have the same impact on ED sufferers. And I agree that it can be inspirational for people who are in similar places to see that someone recovered. (I’m assuming you are talking about Hornbacher’s book? I have not read it myself, but I do know it is apparently graphic.)
I think that it would be useful to differentiate between who the target audience are. If it is fellow ED sufferers and the point is an autobiographical description of the disorder, then I can see a niche for people like Hornbacher. And, of course, quotes from the book and so on, will be in the public domain at some point. (Snippets of her book are commonly quotes on tumblr, for example.) But, if someone is writing an op-ed or an article in newspapers or magazines is aimed at the general public, and that’s where I think we need to be especially careful in how we come across, as I said, particularly if we want EDNOS to be taken seriously, if we want non-fat phobic anorexia to be taken seriously, if we want adults with eating disorders, or male ED sufferers to be taken seriously.
I’ve read and own “Slim to None,” and while I related to that book a lot when I first got sick, I do recall reading reviews of people (clearly who had no experiences with EDs) who thought she was just a selfish brat. I can see how they’d think that, because most of the book were her diary entries (she passed away from her eating disorder), and they did come off as being selfish and immature, if you didn’t really know what eating disorders were about. I feel in those cases, it would be good, perhaps, to put information decoding some of the diary content. What I mean is that a lot my personal entries probably started out with calorie intakes, and complains about how “fat” I am. To someone without an ED, it looks like another vain girl who wants to look like a skinny model. Instead, it was easier for me to talk about how “fat” I felt than to write on paper the things that were actually bothering me that were leading me to take it out on my body, to escape by focusing on my body and my “fat.” Does that kind of make sense?
I’m thinking in this post about how to go about ED awareness to the general public, more than anything else, and if that’s the perspective, then I think instead of just putting out raw emotions and feelings, we should try to explain more about what we really mean when we say “fat” or why we really feel compelled to restrict or binge/purge. (And of course, my bias here is that I think scientific findings really help in that regard.)
Hi Tetyana, no it wasn’t Marya’s book i was referring to.
This is the book-the person who wrote it suffered from severe chronic AN and went into recovery in their late 30s.
http://www.amazon.co.uk/Autumn-Dawn-Triumph-Eating-Disorders/dp/1857761553/ref=sr_1_1?ie=UTF8&qid=1358621384&sr=8-1
..
I think i agree with a lot of what you wrote in your reply.
Oh, good to know–sorry for assuming it is Marya’s book! I’ve just seen so many quotes from it on tumblr recently that it is the first thing that came to mind! Outside of “Slim to None” which I read in high-school, I also haven’t read a single ED (or even mental health) book, so I’m not very knowledgeable about that. (I mostly read non-fiction myself, too.)
It’s not only those type of books which somehow register to me. It can be articles and features on the telly as well on this topic. I should have mentioned that before. For example on Supersize Superskinny last year, this woman who was is called Rosemary Marston who is in remission from severe chronic AN spoke about her recovery story. The feature was hard hitting and if someone wanted to see it they could search for it and watch it on Youtube or the Channel 4 website. Anyway, i know that many people found that helpful and it had an impact. It seemed to meet many of the requirements that has been proposed.
Although, i can find these stories may register more with me. Still, i can find a reason to pull them apart so they don’t apply, such things like oh like that woman was not ill in her teens, or she has been in treatment her whole life and getting constant support. Still, though i do know that many people find those stories helpful when are actually close enough to starting their recovery journey and they can actively seek them out. Such stories still do i think register with me at least on some level.
I agree about the need for may be more diverse stories.
I agree with you that these stories register with sufferers and perhaps family/loved ones. I don’t dispute that. I do think, still, that we need to think about the broader consequences of that and the messages these things send to lay people. It is possible for sufferers to connect, share stories, and otherwise feel like someone else is experiencing what they have, without it negatively influencing public perception. And that public includes healthcare workers, and given the limited (at best) training in mental health/psychiatry medical students recieve (at least at University of Toronto), it shapes their perceptions, too. That’s dangerous. Incredibly dangerous.
I should also add that my take also on books hasn’t stayed the same as this has gone on.
I have done an interview before. The sufferer may sometimes have the best of intentions but the interviewer may ask questions about weight/go on about appearance etc. I had an ok experience but was not that entirely happy with a comment, but had a psych there to who after tried to get me to see things differently.
I’ve seen from other stories to how the presenter can ask about weight and some people do decline to say, but well the media could may be do with a code of conduct also. They can misinterpret stories. The Vikki Hensley story seemed to disappear from the Daily Mail for example.
“I have done an interview before. The sufferer may sometimes have the best of intentions but the interviewer may ask questions about weight/go on about appearance etc. I had an ok experience but was not that entirely happy with a comment, but had a psych there to who after tried to get me to see things differently.”
Great point! This happens *all the time*. Which is why I don’t want to point fingers, but I do want to point out that things will be quoted out of context, so it is best to make sure that what we say has the least possible chance of being misquoted. It is hard and not always possible, but, we can always keep trying to be better at it.
Regarding the mentioning of numbers issue (e.g. weight, BMI, calories ingested etc.): this is something I used to freely mention on others’ blogs, in YouTube videos etc. regarding myself. I was really surprised that this upset people – and actually didn’t know what they meant when they used words like ‘triggering’.
I mentioned such numbers because I come from a Physiology/research background and in studies involving human participants, these types of data are always included. When I mentioned my weight etc. it had nothing to do with justifying how sick I was. I HATED that I was anorexic and needed treatment; I just wanted to be normal and look normal. I wanted to hide my anorexia as much as possible (difficult as that was given my low weight).
Therefore, I don’t think anyone can say that the reason why people mention weights etc. is to justify how sick they are (or are not). It came as a great surprise to me that it was upsetting for others when such numbers are stated.
In a similar way, I was surprised when I learnt that there is ‘competition’ amongst some people with anorexia to be the thinnest. I viewed my anorexia and associated behaviours as both embarrassing and Very Bad. If there was anyone I envied, it was those with anorexia who managed to recover, when I had been stuck with the damn illness for decades.
Cathy — I completely understand you and I get where you are coming from, but I think it is important to be aware of how the non-ED public perceives this information, and how many individuals with EDs perceive it, too. I don’t want to minimize or brush aside your experiences, but (knowing a bit about you), I feel like your perspective is quite unique, and while it is as valid as anyone else’s, I think the point I am trying to make here is that we need to think about how we talk to people who don’t know anything about EDs except for the common misconceptions the majority of people have.
Do you think your perspective is different because of your comorbid diagnoses?
Thanks Tetyana 🙂
I have recognised over recent years that my perspective does seem different to most others’ perspectives. For me, the thinness of my AN was never desired – and I am still too thin. It was merely the behaviours that were egosyntonic – because they altered my mood and quelled my anxiety.
But I also have OCD – which is definitely not egosyntonic (it causes me great distress) and quite a few autistic traits that are, well, just me!
I liked your post and am not in any way being negatively critical; I just don’t see my AN in such an emotive way as do many others. I genuinely feel as if I am on a different planet when conversing with most people with EDs…
Your comments highlight how eating disorders are experienced differently by each person and why it would be helpful for the media to present diverse voices – in a general sense.
While I still don’t think it is a good idea to state numbers because it may do more harm than good for many people, I appreciated reading a different perspective. It wouldn’t have occurred to me that numbers wouldn’t negatively affect someone with an eating disorder, but your comment helped me to better understand why numbers don’t necessarily bother everyone.
Thank you!
Thanks Varsha 🙂
Numbers don’t bother me in the slightest. To me they are just numbers, or data, with no emotive ‘meaning’ to them whatsoever.
Similarly, images of thin people don’t bother me either. In fact I LIKE pictures of people with anorexia nervosa before and after treatment. I have always found the change inspiring; to see someone look so much better when they have gained weight.
Perhaps it depends upon the type of ED one has. I have never had bingeing and/or purging behaviours; just an urge to restrict food because I am very anxious or feel so low, mentally, that I don’t feel I am worthy of existing (so why eat?). I found eating so terrifying and unpleasant that when I was very ill, to see people gain weight and both look and feel so much better gave me hope. It made me feel there was some point in eating more.
I agree with the points you outlined in the post. In addition the recommendations you outlined above, I would like to see more discussion of treatment and recovery.
Some articles focus too much on the seriousness of eating disorders and not enough on the treatment. If it is discussed, it is often simplified (as you mentioned in your recommendations for presenting eating disorder research) —
Several paragraphs of how the eating disorder turned a person’s life upside down. One sentence that mentions the person recovered and a phone number to call for help.
It is important for messages to balance the seriousness of eating disorders with a message of hope.
I would like the media to include more information about treatment and for personal stories to include more discussion about recovery.
Great point! I definitely agree with you. I think it is something I blogged about in a previous post (from several months ago.
“Several paragraphs of how the eating disorder turned a person’s life upside down. One sentence that mentions the person recovered and a phone number to call for help. It is important for messages to balance the seriousness of eating disorders with a message of hope. I would like the media to include more information about treatment and for personal stories to include more discussion about recovery.”
I think in very mainstream media, that’s definitely something that’s missing. It is as if the person just woke up one day and they were recovered… um, unfortunately, not that simple.
Great point Varsha, I completely glossed over that.
Tetyana, to what extent do you (and others) think that the capacity to share personal experiences of EDs through the internet has altered public (and even professionals’) understanding of these illnesses?
Now, I’m not suggesting in any way that I am something ‘special’ having developed AN in the mid-1970s when the illness was not in the public domain; when there was no public internet; when there were no silly weekly gossip magazines – and very few specialists inpatient units where people can share experiences etc., but I had never heard of anorexia nervosa before I developed it as an 11 year old. Eating disorders just weren’t talked about at school or in popular culture. Even my parents hadn’t heard of anorexia nervosa.
When my anorexia began I actually felt that my brain had been hijacked – because the thoughts were both punishing and ‘alien’. I was frightened of the anorexia. yet, in the 21st Century, some people seem almost ‘proud’ of having anorexia.
I do wonder whether the fact that anorexia nervosa has become so ingrained in popular culture, confused with ‘size zero’, seen as part of celebrity culture and (very sadly) seen as a ‘trophy’ by some teens, that people’s thinking and understanding of this illness as a real illness has changed dramatically.
(I cannot say much bulimia nervosa or binge eating disorder because I have never suffered from either of these illnesses).
In 1977, when I was diagnosed (pre-Hilde Bruch and other unfounded hypotheses…), my treatment team viewed AN as a serious CLINICAL illness. No-one talked of ‘bad parents’; fashion; ‘pro-ana’ etc.
So, in summary:
Has the capacity to share personal experiences of EDs through the internet has altered public (and even professionals’) understanding of these illnesses?
I’ll have to get back to this later Cathy as I really should focus on my thesis today. I’m afraid though, that from my personal experiences, I’m not sure I’d be able to answer that because I just turned 24, and I was diagnosed with AN in 2004. My parents have never heard of eating disorders until I told them I think I have one. Those things “didn’t exist” in the former Soviet Union. (I mean, of course they did, but not in the public consciousness.)
This is a good question to ask my psychiatrist though, which I will do next time I see him.
“Has the capacity to share personal experiences of EDs through the internet has altered public (and even professionals’) understanding of these illnesses?”
My feeling (and I’ve discussed this with my psychiatrist today, so it is partly influenced by his opinions, too) is that I don’t think it has changed it at all (or very limited). I think the media representation of EDs probably hasn’t changed much since it EDs started getting media attention. And people outside of those affected by EDs or those who know someone with an ED (like a family members) don’t care about what’s happening in the ED world online. Most people have no idea what pro-ana is, probaly. So, I don’t think it has changed their perception much. I don’t think the media representation of them has helped, but, changing it will be a long and slow processes (how long did it take for us to generally stop blaming mothers for schizophrenia?).
I just saw this post today and agree whole-heartedly that the tropes that surround what eating disorders are “about” are tired and need to change. A friend and I were talking about this some time ago. She had grown up in a very chaotic family and I had grown up in a very rigid, strict to the point of being terrifying family, and yet she was anorexic and I was bulimic, while of course, pts with anorexia are supposed to come from very rigid families and pts with bulimia are supposed to come from very chaotic families. I guess those are more “treatment” tropes, but they do speak to the need for exerting control, which is not always the be-all, end-all of eating disorders.
Similarly, it seems like every time NEDA Week rolls around, someone creates poster after poster with how many 10-year-old girls diet and think they’re fat and WE GET IT. Society has a problem. It is horrible, and I do think that it is awful that young girls (and boys) are being subjected to unrealistic body standards, but to insinuate that spreading that information is somehow sufficient to prevent eating disorders is ludicrous. It only serves to propagate the image of an eating disorder as a diet gone wrong. An eating disorder is not an extreme diet. It is a psychiatric disorder. It fulfills a lot of roles in an individual’s life, and it is not simply something that happens because someone crossed some imaginary line of dietary restraint where if they had just stopped five minutes earlier, they would have been fine. You can’t just say, look in the mirror, tell yourself you’re beautiful five times, and then eat three balanced meals. And expect eating disorders to go away.