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Those who die of anorexia don’t always do so surrounded by sympathy and understanding

Anorexia might win the eating disorder visibility contest but it doesn’t win any on-the-ground PR battles.

New Statesman
A poster alerting models to the dangers of eating disorders is displayed backstage at the Ashley Isham fashion Autumn/ Winter 2007 show during London fashion week, after the first 'size zero debate'. Image: Getty

Anorexia nervosa may not be the most common eating disorder but it’s the one that gets most attention. More visually arresting than all the others, it commands a mix of awe and disgust. Those with binge eating disorder are indistinguishable from those who are simply large. Bulimics won’t be spotted unless there’s a bite-marked hand or swollen jawline. Sufferers of “Eating Disorder Not Otherwise Specified” -- the pauper of the ED world, undeserving even of a proper name -- pass by unnoticed. Anorexia sufferers, on the other hand, stand out (or at least the very thin ones do). But does that mean they receive the greatest outpourings of sympathy, compassion and support?

I think most people have mixed feelings towards anorexia. If you’re the loved one and/or carer of an anorexic, you’ll be aware of all those times when you’ve thought, “But why doesn’t he/she just stop? Why is this person so selfish? Why is he/she doing this to me?” If on the other hand you’ve never been close to an anorexic, you’ll probably claim to be sympathetic, at least in an abstract sense. But are you? Or do you actually think anorexia’s really attention-seeking and annoying? When you read an article about an anorexia sufferer, isn’t there just a bit of you that thinks, “Oh, for fuck’s sake”? It’s not that you want to, but really. For fuck’s sake, eat something. How hard can it be?

Charlotte Bevan, founder of the project Charlotte’s Helix, describes her daughter’s anorexia diagnosis as something which sent her “down a rabbit hole of blame, misinformation, outdated ideas and practices”. We still don’t understand anorexia and what’s more, many of us are still not sure how much we even want to. After all, anorexics are irritating. Besides, don’t they get plenty of well-funded specialist care? Don’t they (ironically) get the largest slice of the eating disorder pie? Due to anorexia’s status as “leader” of the eating disorders, this is a common perception, but it’s far from the truth.

Bevan argues that “treatment for eating disorder patients is woeful and inadequate and, in some cases, dangerous”. I think that, broadly, she is right. Some excellent treatment projects exist but provision is patchy and even when it’s available success rates vary. Meanwhile, many anorexics still experience brutal, punitive force-feeding regimes which may not be their best interests (neither physically nor mentally) and some hospital staff find it hard to hide their resentment of such apparently selfish, uncooperative patients. I write this not in judgment of those who work with anorexics; I think their often harsh responses reflect a wider ambivalence towards the disease. In a society that idolises thinness and restraint, the anorexic may not choose to be ill, but to outsiders starvation can look like an obscene form of moral posturing. I don’t think that’s what it is but I know, both from how I’ve responded to others and how they’ve responded to me, that that’s how it appears.

The Charlotte’s Helix project seeks to challenge these perceptions. Bevan’s hope is that through a greater understanding of the genetic markers for anorexia “people will become educated about what an eating disorder is - nobody's fault and nobody's choice - and stop perceiving eating disorder patients as wilful, vain or attention seeking”. The project is linked to the Anorexia Nervosa Genetics Initiative, “a global effort to detect genetic variation that contributes to this potentially life-threatening illness”. Charlotte’s Helix seeks to add 1,000 DNA samples, taken from long-term sufferers of anorexia in the UK, to the ANGI. To make this possible they are currentlyin the process of raising funds.

I find this project fascinating but also challenging. How far do we need to take anorexia from a social context and place it into a genetic one in order to make it “acceptable”? Does this represent progress or is it letting other forces off the hook? According to project spokesperson Laura Collins, “the idea that eating disorders are a response to trauma or pressures is one that still exists, widely, but simply does not stand up”.

Unfortunately, the myths still exist, because they are "attractive" and fit into our cultural ideas about food and appearance and psychology. The problem with those ideas is they don't help with treatment. Eating disorders are treatable, but that takes evidence-based treatment and shifting away from these myths.The DNA project is actually part of that shift. We know EDs are heritable (53-83% of the risk is genetic), but still don't know what factors influence vulnerability.

It’s an interesting point. Why do some people who are subject to certain pressures or traumatic experiences develop anorexia while others do not? Is it a moral failing, a long-nurtured weakness or something else? I worry that at this point it all starts to get terribly philosophical -- is anyone, really, a “bad” person? Is everything down to our genes? etc.  -- but if there is any chance that the DNA route could lead to more nuanced, less emotionally charged approaches to anorexia, perhaps it’s still a route that’s worth exploring.

All the same, I think there should be some provisos. The first is that, however anorexia sufferers make us feel, we must accept it is a horrible illness, regardless of what causes it. Anorexia sufferers deserve our care right now. It is difficult to set aside anger and revulsion when faced with behaviour that appears so nonsensical and hostile but however manipulative an anorexic may appear, that’s not what it’s like from the inside. Anorexia sufferers are consumed by hunger and their fear of hunger. It’s a miserable way to be. It shouldn’t matter whether the illness is culturally, socially or genetically motivated, or a mix of all three factors. Anorexia sufferers require our support.

The second is that, even if there is an “anorexia gene”, this doesn’t have to mean cultural influences aren’t also to blame for it and other eating disorders. Perhaps such a gene is only the difference between whether you’d get anorexia or plain old eating disorder not otherwise specified. Either way, as long as there’s Vogue, the sidebar of shame and the 5:2 Diet you’re pretty much doomed. I mention these examples not to imply that ED sufferers are flippant and vain, but to stress that people in general (and women and girls in particular) are told every day of their lives that they need to eat less and take up less space. Forcing yourself not to eat when you are hungry and when food is available is a profoundly unnatural thing to do, yet even those who do not suffer from eating disorders are encouraged to live this way. Even if you don’t actually have binge eating disorder, bulimia, EDNOS or anorexia, someone, somewhere, will be telling you it’s a good idea to risk developing one of these horrendous conditions. Instead of seeing different eating disorders as “better” or “worse” -- or deriding all ED sufferers as the weak ones who fell for all those dieting messages -- we need to collectively challenge to fat-shaming and diet culture. To do so wouldn’t cure all eating disorders but it would definitely benefit us all. 

Anorexia might win the eating disorder visibility contest but it doesn’t win any on-the-ground PR battles. Those who die of anorexia don’t always do so surrounded by sympathy and understanding. One of my biggest regrets will always be the profound lack of compassion I and other anorexia sufferers showed towards the “worst” anorexic in our therapy group. She was the thinnest, the strangest-looking and the whiniest. She was suffering terribly, yes, but she got on our nerves. We thought she was a show-off for being that ill, and then of course she died. There is no glory in such a death. It’s a horrible, lonely waste, but even then we can make it less desolate. Fighting anorexia itself is complex, but challenging our own prejudices towards those suffering is something we can all do straight away.  

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