We need to talk about EDA week.

22-28 February is Eating Disorders Awareness Week. This year, the UK is almost in tandem with the USA equivalent, which runs from 21-27 February. So all week, articles about the need to raise awareness of eating disorders and their devastating effects have been popping up in the media. And with a few exceptions, like this article, the majority of coverage has been repeating the same themes: being emaciated is dangerous (but so shocking and sensational, look how many clicks we get if we include photos), the media is harmful (and let’s pretend printing that line means we have no further responsibility to change), teenagers need to learn to love their bodies (and on the next page, Shock as Corrie Star Gains 2 Stone! How To Lose 20lbs In A Month!).

I take no issue with any of those three facts independent of each other. Eating disorders do have an extremely high mortality rate, possibly even the highest of any mental health condition, although I do sometimes wonder whether that would still hold if anyone bothered to pay attention to less media friendly, trauma-related consequences like dissociative identity disorder or certain personality disorders. A related issue is that when people hear this statistic about premature deaths, which varies from 10-20% of people experiencing eating disorders, they automatically think of anorexia and organ failure. In reality, studies such as these two from 2009 and 2011 have found mortality rates comparable to anorexia in bulimia and eating disorders not otherwise specified, with suicide being a leading cause of death. Yet this fact doesn’t sink in: not for the general public, where a quick poll of any group no more than conversationally familiar with eating disorders will show most think anorexia is the most common and most severe; and not in the medical professions, where eating disorders are treated hierarchically, with many areas of the UK refusing even outpatient therapy to people with a BMI over 17.

A further problem is the homogeneity of the personal narratives which make it into the media. The general public could almost be forgiven for assuming that anorexia is the most common and most deadly, and that it is the sole problem of white teenage girls from ‘good’ (read: affluent) families, because that describes 99% of stories published by the press. Even someone looking at my current client base might suggest this conclusion, since I overwhelmingly see students whose parents can afford private therapy. However, the problem is far more complex just below the surface.

My average client does have a privileged background, and a pretty stereotypical presentation. Most also have high-achieving parents, and have experienced no obvious trauma or deprivation. Many have fairly ‘simple’ eating disorders (as much as a serious mental health condition can ever be called simple), in which an attempt to eat more healthily or to lose a few pounds resulted in a self-perpetuating behavioural loop of restriction or bingeing and purging, possibly because some people are genetically predisposed to react this way to restrictive or chaotic eating patterns. That doesn’t mean that the assumptions made by the uninitiated are correct, because without exception, their eating disorders cause misery and chaos, none of them are immune to death or permanent disability, and all are confused and distressed by their inability to ‘pull themselves together’ and eat, despite high intelligence, ambition, and motivation. None would genuinely choose to do this for attention, or to look like a model. These are young people in a huge amount of trouble, and they deserve appropriate support and treatment. Luckily, many seem to make a full recovery.

But there’s a vast gap in my practice, as in all private therapy practices; to a large extent, also in NHS services, and certainly in the media. Eating disorders affect people of all ages, nationalities, genders, sexual orientations, socioeconomic groups, and disability status’. I know from personal experience – both my own and that of the people I’ve met through eating disorder forums and blogs – that oppression of minority groups contributes to the triggering and maintaining processes of eating disorders, and hampers accessibility and appropriateness of treatment.

To give concrete examples: trans people are very vulnerable to eating disorders, both because being underweight suspends secondary sexual characteristics associated with gender dysphoria, and because they typically face high levels of stigma and violence in day-to-day life, leading to chronic stress and trauma. People of colour experience eating disorders as frequently and severely as white people, but the attitude that eating disorders are a white rich kid problem stops them and others from identifying the problem, making it much harder to access treatment. People who started out at higher weights are often excluded from treatment on the grounds of BMI even after losing a dangerous amount of weight, and those whose natural set points are higher than average are discouraged from seeking full health in recovery, both by obesity-obsessed clinicians, and by the fact that public narratives of eating disorders overwhelmingly feature young women who are still very thin after weight restoration. Various studies have suggested that people with ‘treatment resistant’ chronic eating disorders are often those who are not neurotypical, or who have been subjected to complex trauma in childhood; people who have been failed by typical treatment. Clinicians with a narrow view of eating disorders as being caused by distorted body image, leading to pathological thoughts, feelings, and behaviours, tend to blame those who don’t respond to treatment as not trying hard enough, being too comfortable in a ‘sick role’, or having a damaged personality. If you restrict or binge and purge because it dampens otherwise overwhelming flashbacks of abuse, if you struggle intensely with sensory difficulties associated with eating and feeling full, if you cannot make anyone around you believe that you really don’t think you’re fat, you’re just terrified of vomiting or choking or of the safe numbers changing,  treatment providers that do not accommodate diversity will most likely fuck you up and then blame you for their short-sightedness.

That isn’t to say that abuse, neurodevelopmental conditions, gender diversity, or other factors associated with oppression don’t affect people who appear on the surface to meet the stereotype. To a certain extent, this was true of me. I am white, I was assigned female at birth, and I’m a bit of a perfectionist who has had the opportunity to attend university. I grew up in a family which struggled to make ends meet, but there was a period during my teens when we were comfortably well off, and my parents did have a go at funding private therapy for me. Again, when I was really unwell seven years ago, I was able to go back to live with my parents, where I didn’t have to work or pay rent, so could afford to seek private therapy. I am uncomfortable when people suggest my recovery is purely due to factors internal to me, like determination, or ‘bravery’, because actually, I was in a very privileged position, being able to take an entire year out from my life to focus on my recovery. If I’d had to work during that period, if I had bills I couldn’t pay, if I had been entirely dependent on the NHS to get me better, I feel it is very unlikely I would have managed to drag myself out of that hole.

This isn’t because the NHS is always incompetent at treating eating disorders, or that being employed is inherently stressful. This is because I didn’t fit into anyone’s model of anorexia. I had a long, complicated history of repeated trauma, self harm, extreme side effects from antidepressants; I had no body dysmorphia, but was still terrified of gaining weight. I never told anyone at the eating disorder unit that I identified as queer, both in terms of sexual orientation and gender identity. I also have a neurodevelopmental condition – a tic disorder – but my myriad other signs of neurodiversity were never picked up or connected to my problems with eating. My fear of gaining weight was driven by associations between numbers and safety, not the way those numbers looked on my body. I really suffered when my hormones started working properly again during refeeding, both because my history of being raped made me very uncomfortable with sexual attention, and because I have never fully identified as female, and my body seemed ill-fitting. I had very little social support, which people involved in my treatment put down as the result of me dropping out of education several times, but in reality was also related to the fact that I really struggle to interpret and join in with social behaviour, and as a consequence have made very few friends in ‘real life’, as opposed to the internet, where it is easier to think through interactions before engaging. The eating disorder unit I went to made attending therapeutic groups mandatory, and my inability to cope in groups, and the staff’s complete lack of awareness of why this might be, led to my discharge at a low weight the first time around. Several years later, I now suspect that I’m on the autistic spectrum, and am on a waiting list to be assessed by the local diagnostic team. Even if it turns out I have high levels of autistic traits but don’t meet the diagnostic criteria, this issue was enough to make my experiences of treatment first punitive and blaming, and then inaccessible. Treating those with eating disorders as a homogeneous group fails so many of us not represented by the clinical and popular idea of what EDs look like.

Hilde Bruch, author of the famous book on anorexia “The Golden Cage”, heavily pushed the stereotype of the young, white, female, perfectionist with rich, overachieving parents. It seems that she made the mistake of assuming her clients, who like mine, could afford therapy, were a representative sample of people with eating disorders. Similarly, the media has a confirmation bias problem, in that journalists seek what they expect: young, thin, white girls with a single episode of illness, hospitalisation, and a supposedly full recovery to a thin body. Eating disorder activism is also populated with young women who fit conventional Western standards of attractiveness, and giving time and energy to activism is much easier for people who have financial resources. That’s not to say that there is no one out there who has gained a platform purely through merit, and I can think of several people who don’t fit the usual mould at all – just that it’s easier if you have contacts and money. This goes equally for parents and carers – conferences, networking, and awareness raising can be expensive and time consuming. The net result is that the dominant narrative about eating disorders is a very narrow story, which does not take into account the way various forms of privilege and oppression intersect to elevate some and render others invisible.

It’s so important for the full diversity of eating disorder narratives to be visible. It would benefit the people who feel uniquely untreatable and invisible; it would extend the public understanding of eating disorders to reduce misunderstandings and myths; and it would suggest to the current powers that be in eating disorder research and treatment that their pet theories are not universally applicable. I don’t know how to change this, although I’m grateful to the internet for giving more people the ability to create a platform and a voice for themselves. Still, online communities are easily dismissed, especially when related to mental health, and when they voice things that people with a vested interest in the dominant narrative don’t want to hear. What we get is emaciated photos and horror stories to shock people into recovery (like that ever works), calculations of how much we cost the benefits system and NHS to guilt us into eating, inspiration porn about celebrities who have overcome their problems and how you could too (if you had that sort of money), articles on body positivity showing well-proportioned women with flawless skin, and magazine editors arguing about whether BMI restrictions on models are necessary or oppressive to the extreme end of the spectrum who are naturally model-thin. This is what I see every eating disorders awareness week, and it is bullshit.

I don’t know what is needed, but more of the same awareness raising is not it.

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3 responses to “We need to talk about EDA week.

  1. Oh my goodness I agree with so much this!

  2. well done Katie, really well written and I completely agree x

  3. Thank you for this! You’ve pretty much summed up my thoughts on the whole thing.

    I do think in many ways I sum up the stereotype (white, middle class, cis female) and my background is fairly similar to yours. My eating disorder doesn’t fit the media stereotype, and I have other, unrelated mental health difficulties. Most people I’ve come across haven’t fit the stereotype. I’ve also always said I was at my most sick (eating disorder and otherwise) when I was at a healthy BMI. Bulimia never seems to get as much press, and a lot of sufferers are a healthy weight.

    It’s always nice to read a post from you. I often wonder how you’re getting on!

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