ED-Awareness; the 1 in 20 Project

Before I even realized I had an eating disorder, the thing I digested most was literature. Not for my studies, unfortunately. I even had to quit Uni when my brain got too tired to concentrate on studying, and when even the thought of having to go to class was draining enough.

I did, however, savor every recipe I came across looked up. And after I realized was diagnosed with an eating disorder, I also started feeding upon all the literature I could possibly find to make sense of this eating disorderedness. My days were consumed by food and eating disorders for so, so long.

These times have passed now. I haven’t opened a recipe book, an actively eating disordered a healthy living blog or a self-help book in at least half a year. One of few blogs I therefore also lost sight of is EDBites, by Carrie Arnold. I stumbled upon her blog again a few weeks ago and realized I needed to catch up reading. I am glad I did, because she then did a fabulous awareness post the other week that I really wanted to share with everyone here.

But first, let me stray from her post a little and elaborate on the subject..

Eating disorders and body image debates are everywhere nowadays. They are especially linked to images in the media, the stick thin advertised models, the commercialization of dieting, the widely used association between ‘skinny’ and ‘healthy’, the apparent boom of celebrities with eating disorders and the growing rebelling body-love movement.

One can wonder if this recent growing awareness of body image issues is due to a growing percentage of eating disorders. Maybe it is not an epidemic of eating disorders, but simply an epidemic of signification. Either way, the epidemic has a dual implication; it has not just caused growing awareness, it has also caused growing misrepresentations of body image and of eating disorders.

The causal relation between the body-images the media portray and eating disorders seems to be an accepted fact in today’s society. However, some of the most cited studies, such as the Fiji study of eating disorder prevalence after the introduction of (western) television, are, in my opinion, dubious in their conclusions. First of all, the number of girls participating in the study was small, and the follow up study to measure the impact of western TV did not use the same participants as the original study. Also it is often left out that Fiji had access to western media such as magazines for years already. What else needs to be considered is that the people of Fiji did not understand the difference between reality TV and sitcoms, so their understanding of the reality of TV is not comparable to western understanding. The western media often says the Fiji girls take the western actresses as role models to want to look the way they do, but the original study states that these girls said they saw the actresses as role models for their work and career perspectives. This is something completely different. And even though the study showed an increase in purging behaviours, the average Fijian BMI did not decrease, it even rose a little. The respondents in the study did not show any weight loss. We all know that weight loss does not count for an essential to have an eating disorder, but that, combined with the fact the average BMI of Fiji is close to what in the Western world is considered overweight, does put the study in a different perspective.

Different studies, such as one in Curacao, show something else. Where this country is very aware of western ideals, if not only because it is a satellite-country of the very western Netherlands, the preference for curvy, round women has never changed. Even more striking is that, even though their ideal is almost the opposite of what is portrayed by western media, the percentage of eating disorders among the high-risk group of mixed-race and caucasian teenage girls in Curacao does not differ from the international average. The study did show that among the black women in Curacao there were no reported cases of anorexia. The study, unfortunately, only focuses on anorexia, and even though it reports findings of bulimia for the black part of the population, it does not elaborate on it. What does this mean? That, even though the Curacao population is not oblivious to the western ideals, anorexia was not found in  a large part of the population. The media are therefore not the only ones to be blamed.

This all is by no means an attempt to downplay the importance of addressing the aforementioned skewed image the western media bombards us with on a daily basis. Nor is it a way to say the raise in awareness should be reversed. Many studies show that anorexia is a disease mostly found in affluent, industrialized countries. Therefore, it might be considered not just an epidemic of significance, but also an epidemic of disease itself. And it entails an even bigger growth in the future, since technology keeps advancing and the world keeps getting richer. The current trend of hating on our bodies is not something to be ignored, whatever the direction of correlation between the media and our self-image is. It is just too easy to blame it all on western media, as (ironically) the western media appears to hold true. Fact is that, whether the ideal is skin on bones or junk in the trunk, the world wide average of eating disorders is 5%. Five percent may not sound like a lot, but it is one in every twenty people. Or, returning to Carrie’s words: “Each year, roughly 4 million babies are born in America. Approximately 200,000 of these babies will develop an eating disorder. Every year has 525,600 minutes.
That means that every 2.6 minutes, a child will be diagnosed with an eating disorder. Every two minutes, a parent will be told ‘Your child has an eating disorder'”.

Yes, that is a lot.

And since this is the case worldwide, even if the local body-ideal glorifies curves and more, pointing fingers at the media and trying to change what they choose to portray, might possibly not have the effect we like to believe it will. This calls for even greater awareness campaigning regarding the subject. If 1 in 20 people fall victim to eating disorders worldwide, this deserves serious attention, not in the least to make people (and especially politicians who have power to change the currently lacking health system) understand the importance of early (medical) intervention. Where the current health systems seem to focus on admission of patients who have hit rock bottom (or have managed to dig beyond that), we need to make them understand that, for a disease this prevalent, this is completely ineffective and all the more costly in the long run. 

One in nine women fall victim of breast cancer. Yet no doctor will have to postpone treatment until it has reached an extremely advanced stage. More so, in recent years the amount of awareness campaigns focused on self-checking, Facebook virals to remind us when it’s breast cancer-month and celebrity commercials to do the same. All to help make early intervention possible, and to help take preventative measures.

We need to stop putting our energy in trying to raise awareness about the skewed body images in the western media. We should instead raise awareness about our failing healthcare system. We need to raise awareness about the prevalence of diseases for which early intervention and possible prevention will result in saving lives.

One in twenty people will suffer from an eating disorder.
Eating disorders have the highest death-rate of all psychological illnesses.
Early intervention, or possibly even prevention, can save millions of lives.
How about we raise some awareness on that.

PS; Unfortunately my internet is failing on me, so I cannot search for web links to the studies mentioned. However, I am sure all of you are ‘Google-proficient’ enough to trace them.


16 thoughts on “ED-Awareness; the 1 in 20 Project

  1. I need to get on doing this. I think I’m just going to reblog you probably. This is really well put. Maybe tomorrow seeing as I’ve already posted today.

    Love x.

  2. I really enjoyed reading this and appreciated your thoughts on it. I agree that we need to stop the focus on the media and more on our failing health care system. All of the focus on the “media causes eating disorders” also drives me crazy, as my eating disorder did not begin as a result of poor body image. If we’re going to try so much to spread awareness, it needs to be better rounded.

    I hope you are doing well.

    • Thank you! I think it is something a lot of people consider to be a ‘silly phase’, and we really need to get the focus on the fact that this is, instead, a disease with a very very high mortality rate!!

  3. amazing post :D didnt realise abotu that curacao study. I think people fail to realise that watching tv is quite different from the here and now. Yes, you can watch all the american sitcoms you like, but if the society u live in.. everyone around u doesn’t care about all that and strongly believe in big=beautiful, or food is good that kinda thing.. stuff on tv isn’t really going to take hold cos it isn’t really REAL, u know?

    “One in nine women fall victim of breast cancer. Yet no doctor will have to postpone treatment until it has reached an extremely advanced stage. ”

    so true… unfortunately the public perception is that cancer is not a choice, it’s inflicted on the sufferer, whereas ED is a stupid thing of the mind/vanity/ choice – rarely do u hear the words ” victim” when it comes to ED. Problem is the health care system. and the lack of knowledge about the subject, it’s not something we have very effective treatments for, so.. helplessness and frustration make us eschew the topic even more..><

    • Yeah thats exactly what I just replied to Boulimique too. General opinion seems to be that eating disorders are some ‘phase’, a way of trying to get attention, that we just need to ‘snap out of it’.

      It reminds me of my course on infertility in different cultures. It used to be common thought that infertility was caused by psychogenic problems. As technology/science advanced, more and more cases were explained by somatic/genetic/infectional problems though, and the psychogenic ‘blame-game’ (because that is what happens when they say the cause of the problem is ‘in your head’, it makes the patient responsible for the condition) slowly took a backseat. Not to say it’s disappeared completely, but the focus has definately shifted.

      The same thing is going on with eating disorders. People don’t seem to understand it is not just something ‘in your head’, that there are actual physiological processes going on that make this all happen. I’ve been astonished so many times of how it is possible that people with EDs all around the world have the same ‘things’ (both physical, but also actions and thouhtprocesses) even if they have never read a word about what eating disorders are or do. That, I think, quite clearly demonstrates that it is not something people ‘make up’ or ‘copy’ from one another and is thus also something they just need to ‘snap out of’

      • yea.. i think how people across cultures experience th same things is quite amazing too. yet.. so much is not understood about it. the physiological changes in teh brain behind it, like all the research shows.. its quite fascinating because, really.. ED drives more ED.. it’s so much harder to cure compared ot cancer etc, because it.. sorta perpetuates itself.. sure, u need a trigger , but still… it could be anything, and like most ppl point out, not necessarily about wanting to be thin. quite a few anorectics hate how they look, but just can bring themselves to fight it.

        that being said. like infertility etc.. we seem to haveswung to the other extreme. unfortunately, once an underlying cause is found, people tend to say ” see? its not my fault, there’s nothing i can do about it” and don’t even TRY to help themselves, which i find bloody frustrating. yes, its difficult, but if ur not going to do small things that could help like stop smoking, do a bit of exercise, have a healthy diet etc.. it really isn’t going to help! so many patients i have just insist on ” that magic pill” to solve their problems, because its not their fault, so whatever they do can’t help etc.. need to strike a balance.

        and no, doctors unfortunately can be the most cynical and prejudiced ppl of all. strange, ain’t it? but so many are so disillusioned by the time they get out of med school, that.. its just so exhausting, so much easier to help themore “acute” patients.. the broken bone, the failing heart, rather than cope with the mind- because its the unknown, and like u said.. a lot don’t understand the feelings behind it. And unfortunatley in this day and age of litigation, it’s hard to get to know the person behind the illness.. just too many things can go wrong. The problem is.. every ED is different. not one size fits all. so u need to individualise treatments. but if you do, its hard to justify something that’s considered ” out of norm” in court. if it works, great! but for every success, you’rebound to fail. and its those failures that courts will pounce on and say ” that isn’t the current guidelines.. why did you do that?” so.. doctors just stick to what they are taught. that’s why i realised too.. i gained more help from a couple of doctors back in third world countries where it’s a lot more.. personal..even in 2 consultations than i did in the australian system for years which follows these rigid guidelines.

        i have a theory though. lol. call me crazy, but i think the media and communities obsession with weight and thinness and looks”? it might actually be a SYMPTOM of anorexia.. remember the starvation study.. once triggered by intentionally cutting calories/ilnesses or something, ppl start obsessing about food/counting calories/ body image when they never did before?perhaps that’s whats driving the whole thing in the community and then of course, it becomes the norm, and everyone wants to be thin, so they go on more diets, which self perpetuates ED…. just a thought. :P

  4. I really need to get round to doing this, procrastinating…

    I think EDs are still massively misunderstood. I remember going to the Doctor and begging for help. The first time I was treated like a silly drama queen who needed to eat a sandwich, I was literally told ‘why don’t you eat, you’ll feel so much better!’, when I went back the second time I was taken seriously, but rejected by the local Eating Disorder Unit because my BMI wasn’t low enough, the third time I was rejected because my blood tests came back ok. At least my country has a free health service… There is treatment, but you have to be near death to receive it. Whatever happened to prevention… Rant over! I need to vent! lol

    I think it’s easy to play the blame game. The media does portray an unrealistic body image, and people when I was starving, in a lot of emotional pain and losing my mind, I was praised for losing weight, weight I didn’t need to lose in the first place, I think there is something very wrong with a society like that. However, they are diseases, not something we chose or choose to live with. There have always been eating disorders in society, they have taken different forms (religious fasting etc.) The one in twenty stat did shock me, but then I shouldn’t be surprised. I think there are a lot of EDs that aren’t seen, people hide their disorders.

    • Yeah and the 1 in 20 is only the eating disorders. I think even the diagnosed ones, but of that I am not sure. But either way, it doesnt include the ‘disordered eaters’, which must be 1 in 10 at least nowadays…

      And you wanna hear the most sorry thing? I was rejected by the local ED-Clinic because I was TOO underweight. I know right? They would not allow me treatment until I was a higher BMI, which was either ‘get over yourself and start gaining’ or ‘get yourself tubed up in the hospital’. They didnt mention either “options” btw, they just told me they could not take me

      • =( That’s awful. Doesn’t shock me though, as I’ve known people in a similar situation but oooh! It makes my blood boil… Refusing to take someone for being too sick?

        I reckon there are probably a lot of disordered eaters in our society. The diet industry continues to boom, and is the biggest scam ever, and people get caught up in it…

        As for awareness, I remember I didn’t even realise I was anorexic for ages, because I was very uninformed. I always thought anorexics were just silly teenage girls who wanted to be thin and thought they were fat and didn’t eat anything. I thought I was ok because I ate, and I ate all sorts of things, but I counted calories, which is what normal people did right? Anyway, I wanted to be small and disappear, not be thin. Totally different… And I’d been that way for years!

      • I didn’t know I could possibly have anorexia either. Yes, I was thin, yes people worried, yes people mentioned it. But I HATED the way I looked. I would cry everytime I would catch my body in some mirror. Bawl my eyes out in front of the mirror in my bathroom after having a shower. I did not think I was fat, the opposite! How could that possibly be anorexia?

        I think the DSM is so misleading. I do not understand the purpose of that friggin’ book at all. It even mentions you are not spposed to have a period. Which thus means men cannot have anorexia (or, are always anorectic?) because they cannot have periods. WTF!

      • Same, I felt that most of the time I had a rather accurate view of myself. Often I hated being so thin, but could see no way out… Even now I don’t see myself as fat, just big. Big for me! I’ve only started having body image issues since recovery! lol

        Yeah the DSM annoys me too! A lot of the time I’ve been ‘EDNOS’ due to weight etc. I feel I have a lot of aspects of bulimia too (even at my lowest weights I did binge periodically, kept me out of hospital and saved my life!)

        Yes! The period thing completely excludes men (and women using certain forms of birth control) I had a friend with a BMI of 12 who still had her period, yet I lost mine once I hit 19… Healthy weight women also lose their periods too (had a friend who lost hers for 9 months due to stress!) I think it’s ridiculous! Apparently it’s changing… still, I don’t think anyone can fully fit a ‘text book’ definition of an eating disorder. They are much more complicated…

  5. Yikes, I commented and then my computer shut down and lost it :( but Sooz, you have to keep on writing, you have a powerful way with words. I agree that prevention is so needed. They don’t have ‘funding’ to help enough people with EDs but they could save so much expenditure by giving people help much earlier on. -Before chronic happens. Before medical complications happen. people would be up in arms if they did that for cancer, told them they can’t afford to help them unless they were already at death’s door.
    It’s definitely not the media at fault though they do make me want to bang heads together with their superficiality and their feeding of body image shame. But basically the media gives it’s audience what it feels it’s audience WANTS. We are the ones who have indicated we want to be told we are too fat etc. While there’s a market for it, they’ll keep on telling us it.
    My ED was never about food and weight or looking like a model. Until later anyway, after I already had an ED. Then, I went looking for everything that could tell me how to weigh less, but I still didn’t go looking for models – they to me are boring. But I can see how they would feed an already sick person’s disorder. But the difference between people who just go on a diet and people who develop ED is that someone going on a diet will end that diet and be fine really. Someone with a predisposition to ED will develop it in response to a trigger that doesn’t have to be food and weight either, but could very well be.
    I have read that there are people with anorexia in third world countries and plenty of them, same with Bulimia. Apparently they are underrepresented because there aren’t the medical services there to even identify them. But they are there. It’s not a disease that only people with access to food and media have either. (So when someone says, you should try living in a third world country, then you would be grateful for your food and not do this silliness, they are WRONG). Also men are underrepresented – the numbers are actually closer to 50%, I’ve read that too. So are BED and COE underrepresented. Not because we don’t know people suffer from them – but because they aren’t considered by many a legitimate disorder when they ARE and they cause great distress and medical illness.
    It’s past time people were more educated and serious about helping those with ED. Sometimes I wish that the people who are ‘treating’ some of you who I read your blogs of, would come online and stumble on your blogs, and read them. Whether they knew it was a patient or not, I wish they would read them. They seem to think they ‘know what they are doing’, ‘know better than the patient’, that the patient is ‘histrionic’ etc. If they could read some of your blogs that have reduced me to tears lately, I would think they would start realising just how little they are helping some of you and how much they are harming.
    Enough of my ranting – awesome post xxxxx

    • Of course the media is only advertising what they think will make them most money. And I really do think they should collectively start changeing what they portray though. Yet, I think a lot of the anti-movement people are focusing their energy/time/money on this instead of raising awareness about EDs themselves, about possible prevention, about the skewed healthcares system, etc. If they would focus on THAT, and make people aware of what the real problem is here, I am sure the ‘skinny model thingy’ will slowly bend too. And not so much the other way around. When the focus is on banning skinny models,which at some point they will be able to accomplish I’m sure, then the “problem is solved”. But it’s not! Only some of ‘society’s symptoms’ will have been dealt with.

      I guess it’s a doctors thing to assume they know everything and bestest (in Roxy words). But they should indeed keep learning. Not shut their eyes. It’s not like, just because you got your degree, you’re the expert for the rest of times. Times change. And the real world is not in books. Not everything can be learnt from books. Not in the social sciences anyway. And I know doctors aren’t social scientists, but they aren’t simply studying or dealing with mechanical issues either. There’s a person in that patient, and to understand them, they have to get to know the world they/we/all of us are living in.

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