People think they know what it's like to have anorexia.

They tell me of how they once went all day without eating. Or those few weeks when they thought they had to go to the gym every single day.

They bitch about their thighs and stomachs and butts, and swear their jeans make them like huge, like a cow--no, not a cow. A whale. Leviathan.

They tell me of the crazy diets they were on in high school and college, where they ate nothing but cabbage or grapefruit or sausage or special weight-loss cookies.

I'm not saying these experiences aren't disturbing and sad. I'm not saying they aren't symptoms of a fundamentally screwed up culture. But they're not anorexia. The sooner we can separate dieting and eating disorders, the better.

Our society doesn't understand eating disorders. They're seen as an uber-extreme diet of control freak teen girls, a phase that people will grow out of, a desire to look like models and celebrities, a choice, a teen trying to find freedom from her (and it's always a "she") from her over-controlling family, an expression of vanity. The truth is this: eating disorders are a biologically-based mental illness that sufferers don't choose and parents (and culture) don't cause.

This cultural misunderstanding of what eating disorders actually are goes a long way in creating much of the stigma that surrounds this condition. If people are told that eliminating Barbies will curb eating disorders, then it's easy to view those who have eating disorders as a bunch of vain and vapid idiots. Visit an eating disorder clinic, though, and you will quickly learn that eating disorders aren't diseases of vanity. Look at the research and you'll see that eating disorders aren't just a phase people grow out of, that genetics is a major risk factor, and that eating disorders are the most deadly of all psychiatric illnesses.

In a post from the blog Weightless earlier this week, blogger Marina Tartakovsky quotes Aimee Liu's new book, Restoring Our Bodies, Reclaiming Our Lives:

"...Yet eating disorders receive only a fraction of the research funding that goes to these other conditions [schizophrenia, alcoholism, depression]. And in most regions of the world, private insurance and government funding for treatment are not adequate to support the specialize care required to cure these illnesses. Why? The answer, in a word, is stigma."

Mental illness in general is surrounded by lots of stigma. It's all in our heads (obviously--it's not called mental illness for nothing), we should just get over it, it's all a big conspiracy from Big Pharma. Whatever. 

But just as understanding the true nature of epilepsy and seizure disorders shifted them from demon posession to actual illnesses, so, too, will a better understanding of what eating disorders actually are.

Writes Liu:

"The stigma that surrounds eating disorders paints them as trivial ‘girl problems,' diets gone awry, adolescent rites of passage, or the acting out of juvenile rebels or ‘control freaks.' Anorexia, bulimia, and binge-eating disorders are sensationalized by the media as celebrity spectacles. Even the medical profession, by and large, still dismisses disordered eating as a behavioral quirk and thus fails to recognize the serious psychological threat this behavior represents. Stigma suppresses funding and attention to eating-disorders research and is a primary obstacle to adequate treatment and prevention efforts."

So where do we start?

First up, we need to stop blaming the sufferer and his/her families. If you feel to blame for an illness, you're much less likely to stand up and advocate for the treatment you need.

Second, we need better media coverage of eating disorders. Instead of focusing on celebrities and starlets and models and body image, we need to start covering research advances with the same splashy headlines. Let's not sensationalize deadly illnesses. Let's not place stories on eating disorders in the "Style" section. They're not a style or a fad.

This is where I see science stepping in. Rather than being a resource for unemotional data wonks (don't worry, I was one of these once!), science can actually increase understanding and compassion towards people with eating disorders. A study in the International Journal of Eating Disorders found that explaining the biological nature of anorexia increased college students' understanding of sufferers and decreased blame.

These research studies are more than just a sympathy ploy. Until recently, it was perfectly legal to deny life-saving medical care for eating disorders in New Jersey because they weren't considered "biologically-based mental illnesses." But families teamed up and sued their insurance companies, citing evidence that 50-85% of the risk for anorexia is genetic, and that relatives of an eating disorder sufferer are twelve times more likely to suffer from an eating disorder. Both of these studies indicate that eating disorders are rooted in biology. With science on their side, the families won their suit.

Mostly, what people with eating disorders need is consideration and compassion. If you know a person with an eating disorder and aren't sure what to say, think about what you would say to a person with cancer.  That's the kindness sufferers need, because it's not something we chose.

About the Author

Carrie Arnold

Carrie Arnold is in recovery from a decade-plus battle with anorexia and is working on her third book, Decoding Anorexia: How Science Offers Hope for Eating Disorders.

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