Beyond Body Positivity: Why We Need Inclusive Representation of Eating Disorders
“Have you ever been triggered by a Facebook memory?” I ask my roommate while we drink coffee on our front porch.
“Yeah,” she replies, “all the time.”
It’s something most millennials are familiar with. You look at your Facebook memories and there it is, the photo of you with your abusive ex or some post you wrote right before a traumatic night in college.
For me, it was a picture from August 2013, when I was at the very deepest, darkest depths of my eating disorder.
The picture is a little out of focus. I am on a hike, and barefoot, one foot showing in the photo, the other cropped out. I’m standing on some round granite boulders, hands on the straps of my backpack, looking over my shoulder and smiling. It’s a wonderful photo from a wonderful time in my life when I was living in South Korea as an English teacher. Except.
Except in the photo I am not me. I am emaciated, the bones peek out from my shoulder, my arms are toothpicks, too weak to hold onto a piece of paper. The skin across my face looks drawn like it’s been stretched too tight across my skull. And although I am smiling, there is a kind of manic fear in my eyes.
I want to look at that photo and say, I don’t even know that girl anymore. But that’s not true. I know that girl all too well. Even though I’m seven years older and many pounds heavier, I am still that girl. I look at that photo and a small voice in my head thinks how badly I want to go back there. How I’d love to have that kind of control again. How I’d love to be that small again.
My eating disorder doesn’t control me anymore, but it is still there. It still whispers to me every day and in my weaker moments, I listen.
My story is a familiar one. I am an able-bodied, thin, cis-gendered white woman who suffers from an eating disorder. You recognize my story because you’ve seen it before. It is a story that is told in Lifetime Movies and joked about across social media every day.
But what about the stories that aren’t told?
Eating disorders are as prevalent now as they ever have been. Although tracking data of these diseases is difficult, some research has shown up to 13% of teenage girls will have some sign of an eating disorder before age 20.* And these eating disorders can kill. Anorexia alone has a mortality rate of 10%.*
Yet, even as we experience rising mental health awareness, eating disorders are relegated to the world of made-for-TV movies and cheap jokes. And even when eating disorders are represented in more mainstream productions, they are either sensationalized or stigmatized.
In 2017, Netflix released a film called To The Bone, and although I didn’t waste my time watching it, each and every review criticizes the film for once again showing a superficial story about a thin, white teenager wasting away in a kind of self-righteous cry for help. It capitalizes on the disease without examining how the disease can rip a person’s psyche apart.
In his recent expose of the YouTuber Eugenia Cooney, Shane Dawson does much the same thing. He claims throughout the production that he wants to help Eugenia tell her story so that others who are suffering can find hope, yet he seems more interested in digging up her most traumatic experiences. He spends a majority of the video talking about how little food she ate, and showing pictures of her emaciated body.
Most media portrayals of eating disorders focus on white, thin, able-bodied women suffering from some extreme version of anorexia or bulimia. They sensationalize it, at best creating a kind of strange torture porn and at worst making the disorder look glamorous. Yet the reality of eating disorders couldn’t be more different.
For starters, there are eating disorders themselves that people don’t understand. Binge eating disorder, the newest to be added to the DSM, is the least understood and most ridiculed. Although people with binge eating disorder come in all shapes and sizes, we most commonly see it depicted as larger bodied people shamefully binging on food. Again, an eating disorder displayed as a kind of cruel joke. But this is a distortion of reality. 3.5% of women and 2% of men will have binge eating disorder during their lifetime.* This is three times more common than anorexia or bulimia. It makes binge eating disorder more common than breast cancer. It is not limited to larger-bodied people, it is the most common and most insidious eating disorder that can affect anyone and everyone — and yet many people have never even heard of it, or worse, don’t believe it is real.
Anorexia and bulimia are both generally more well understood, but that doesn’t make them any easier to treat or live with.
Larger bodied people are just as likely to have anorexia or bulimia as thin people. But larger bodied peoeple are likely to suffer for much longer, because their bodies aren’t thought to be the “typical” anorexia patient that we all see in the media.
When my eating disorder took off, I didn’t think I was heading toward anorexia. I never thought to myself, I’m going to be anorexic. Rather, it started out as a quest for control. I had just moved to South Korea to teach English, I was 23 years old and overwhelmed. I started counting calories as a way to stay healthy while surrounded by all the delicious Korean food. Over the next year, my simple attempt at counting calories to avoid weight gain transformed into an obsession over my food and my body.
I bought a food scale and started weighing everything that I ate. I learned that there were some foods that I couldn’t really fit into my meal plan for the day, so I stopped eating them. Dairy, bread, pasta, avocados.
I never put more than 1 clove of garlic in a meal, never more than a 1/8th of a cup of lentils or beans, never more than a ¼ of an onion. But I thought I was being healthy.
I turned down every invitation to go out with friends. I only ate food that I could track. When I reached a plateau, I cut out more calories and more calories. I lived a secret, utterly calculated existence. But in my head, I didn’t see a sickness. In my head, I was healthy. I was in control.
According to many different researchers, the best known environmental contributor to the development of eating disorders is the sociocultural idealization of thinness.* At my work and with friends, The only input I got from the outside world was positive. The compliments helped reinforce the lie that I was healthy, fit, and happy.
Social media reinforced it as well. I followed fitness gurus and Instagram influencers who spoke about choosing fitness over thinness and clean eating over dieting. I thought that I was eating clean. I cooked my vegetables in water instead of oil, I avoided simple carbs. I had a bad list and a good list, and I never ate off the bad list.
And yet, whenever I saw a picture of myself, the only things I noticed were the imperfections. The roundness that still persisted on my arms, the curve of my belly. I still saw myself as too big, too round, not small enough, not beautiful enough.
I was at war with myself, but I called it self-care.
I stopped menstruating but told myself it was just the stress of moving to another country. I was sick all the time but told myself it was just a detox. It wasn’t until my weight dropped so low, in August of 2013, and my bones poked through my skin, that some friends found the courage to confront me.
They pulled me aside, one drunk night at the bar, and confessed that I was scaring them. That I’d grown too thin, that this health and wellness journey had gone too far. At first, I fought back, they didn’t understand. I wasn’t thin, I was muscular, strong. But they persisted, and finally, I found the courage to look in the mirror and see what they saw. A girl who was wasting away, killing herself for a sense of control.
But what if I hadn’t reached that point? What if I’d been heavier when I started, would it have taken twice as long for someone to realize I was sick? If I’d been only 30 pounds heavier when I started my extreme restriction, I’d have dropped only to a women’s size six. Would you think a size six is dangerously anorexic? Probably not.
What if I had been a man? A Black woman?
Would anyone have looked twice?
The fact is, if you’re not a thin, white woman, you are far less likely to be diagnosed with and receive treatment for an eating disorder. Even if you are suffering from the kind of extreme symptoms that I just outlined in my own story.
For example, males represent 25% of all individuals with anorexia nervosa.* Yet most people don’t believe that males can even get eating disorders. It is much more difficult for men to get diagnosed than women, and many men suffer without treatment because nobody can see that they are suffering.
The same is true when you factor in race. The dominant narrative shows only white bodies with eating disorders, but Black teenagers are 50% more likely than white teenagers to exhibit bulimic behavior.*
It becomes even more distressing when you look at the attitudes of the medical community — the very people who are supposed to help us to recovery.
There are similar rates of eating disorders across white, Hispanic, Black, and Asian populations in the United States, yet people of color are significantly less likely to receive help for their eating issues.*
In one study, clinicians were presented with identical case studies demonstrating disordered eating symptoms in white, Hispanic, and Black women. Out of all the clinicians, 44% identified the white woman’s behavior as problematic, 41% identified the Hispanic woman’s behavior as problematic, but only 17% identified the Black woman’s behavior as problematic.*
If you are Black, you are far less likely to be given professional medical help with your eating disorder even after you exhibit symptoms.
The importance of representation cannot be overstated. People with eating disorders are spread across all races and ethnicities. They are men, women, nonbinary, and transgender. They are gay, straight, bisexual, pansexual, and queer. They are, predominantly, of average body size or larger bodied. And they struggle silently because people do not believe that they have a problem.
If you are a Black woman of average to large bodyweight who restricts calories and obsesses over the food you put in your mouth, it is almost impossible for you to get diagnosed with an eating disorder. If you are a transgender person you are far more likely to have an eating disorder than your cisgendered peer and yet less likely to receive treatment.
These practices, these biases and prejudices have far-reaching consequences for our bodies and our mental health.
Long term calorie restriction or bulimia can severely weaken bones and damage internal organs. Larger bodied men and women will almost always suffer from their eating disorders for longer than their thin peers, resulting in greater damage to the body over time. But there is also the damage to the psyche that an eating disorder can cause.
When I decided to start down the long road to recovery, I found all these roadblocks in my way. I’d spent so long counting the calories in my food and analyzing every morsel that passed my lips, I couldn’t stop. My brain was conditioned to make the calculations almost unconsciously. Against my will, I calculated the calorie count of every piece of food I saw. The idea of eating a piece of bread sent me into full-blown panic attacks. Avocado brought me to tears. Inside my own head, I ran in a never-ending circle, flip-flopping between wanting to get better and terror at the idea of gaining weight.
I was a prisoner in my own mind.
At my lowest point, I thought that killing myself was the only way out.
I wasn’t alone. 1 in 5 deaths from anorexia are by suicide.* These diseases kill, and not only because they deprive the body of nutrients. The more we refuse to recognize the people of color, the men, the fat or large-bodied individuals, and the queer people who struggle invisibly with these diseases, the more people die because they could not get the help they so desperately needed.
Recovery from an eating disorder is an incredibly long and difficult road. Eating disorders are unique in that they make you want to have them. Relapses are almost guaranteed. Even now, with several years of stable weight and no outward ED behavior, I still sometimes long to count calories, to have that sense of control over myself again. Every day is a fight. A fight against myself. A fight to choose myself, to choose my body, to choose my life.
The body positivity and acceptance movement, started by Black women, has done so much to normalize different types of bodies. But for those trapped in the prison of eating disorders, we need more. We need more depictions of diverse people struggling with and overcoming eating disorders. We need honest portrayals of the insidious ways eating disorders can infiltrate every aspect of our lives. We need to admit that most often, the people suffering don’t even know that they are sick. And we need to discuss the road to recovery, how it’s not just a one-time decision. How it’s not a matter of “eating a hamburger” or “just stop binging.”
Those of us who suffer from eating disorders are trapped in a prison of our own creation. It is a living hell that for too many of us, ends in death. Take our mental illness out of the shadows, out of the world of Lifetime movies and sensationalized stories about white teenagers wasting away to nothing.
Take us, all of us, seriously. So that everyone has a chance to heal.
*https://www.nationaleatingdisorders.org/statistics-research-eating-disorders is the source of all statistics used in this article.