If I had a nickel for every time I was told all I needed was a sandwich, I’d probably be able to afford real medical treatment for my anorexia.

To be fair, most people don’t mean to be insensitive about my illness—they might not even realize they are being insensitive. They are going by what they’ve seen and read about eating disorders which, as far as I can tell, isn’t much to go on at all. There isn’t much media about eating disorders, and the small part of them is rarely accurate. I would know because when I went looking into my eating disorder, I found very little I could relate to. In fact, I found more things that harmed than helped.

The relationship between me and my disorder is complex, like most mental illnesses. For years I was in denial about my problem, but I had a feeling that something was off. Like a true Hermione Granger, I set out to do extensive research into what the hell was going on with me. I started off trying to find facts— in Google searches, WebMD results, and the pages of my eighty-dollar psych textbook. I took endless eating disorder screening quizzes online, each telling me in bold flashing letters: High Probability of an Eating Disorder. I read big Latin words and the accompanying bullet pointed lists of symptoms. Although thoughts food and calories preoccupied me, and I constantly commented about my weight, I hadn’t stopped menstruating, or eating completely. And whose definition of “dramatic” weight loss was correct, anyway: mine or everyone else’s? Growing up in a conservative house where mental illness was a fancy word for lazy and crazy, we didn’t speak of eating disorders, much less Google them; I deleted my history on the family laptop hourly for self-protection. leaving me even more confused about my illness.

Wintergirls by Laurie Halse Anderson

I first read Wintergirls when I turned eighteen on the cusp of my illness. I read the haunting tale of Lia Overbrook in secret, hunched over a digital PDF copy on my phone. Her story horrified and disgusted me – and honestly made me a little envious. She was described as being so thin, so beautiful, so fragile because of her petite body. Like a porcelain doll. I came away thinking this would surely be one of my favorite books, yet I found myself frustrated by it. I did not work as hard at my weight loss as the pretty, porcelain ex-ballerina Lia did. I had not yet flung myself as far off the deep end of the disorder as she did.

Weight is a painful trigger when reading books about eating disorders. Every time a disorder is mentioned, it seems like the person’s weight must also be mentioned, as though it somehow validates the character’s illness. Lia’s BMI is mentioned on almost every other page as it sinks lower and lower.

These weights unlocked a certain competitive drive in me, a common personality trait in people with eating disorders. I have always been an ambitious, goal-oriented girl, and these weights gave me something to shoot for. I believed I had to be at a certain BMI to prove that I was sick, and that once  I reached a certain weight, then I could stop. I became fixated, triggered by numbers; I beratedmyself for not reaching my goal weight. To this day, I believe what kept me sick for so long was that I wanted to reach Lia’s BMI. I began reading in search of a character who understood my distorted views on eating and body image, but instead I came out thinking I needed to try harder to get thin.

I’d be lying to you now if I say thinness still isn’t a goal.

Instead of learning that “eating disorders are bad,” I learned “here’s how you get good at it.”

The Best Little Girl In The World by Steven Levenkron

An eating disorder can look glamorous to those who’ve never been sick. The reader becomes fascinatedwith how someone can go that deep in self-denial, how they can function  eating so little. They may question if they have the willpower to plunge deep into the cold, unforgiving depths of the disorder. But what is the price of this glamorization? The dehumanization of the sufferers.

The Best Little Girl In The World by Steven  Levenkron, the original eating disorder novel, drives this point home. I discovered the book a year after reading Wintergirls. I was at the lowest weight of my life and starting to become faintly concerned about it.. Dr. Steven Levenkron wrote The Best Little Girl in the World in 1978, when eating disorders first emerged  into the public consciousness. Known for his work on anorexia and self-harm as well as for treating singer Karen Carpenter in 1980, Levenkron claimed he had based the novel  on his own patients. His website boasted a 90% recovery rate. He must know something.

I later learned that Karen Carpenter died of anorexia in 1983, apparently a part of the 10%.

Eating disorder books are graphic. It’s what they’re praised for: “gritty, raw, unflinching narratives.” They highlight how hard eating disorders are by torturing these girls. The Best Little Girl In The World  stayed with me, not because of its plot or characters but because of its gore. Horror movies can’t hold a candle to it. I still have nightmares over the “feeding” scene. (If you haven’t read the book, the TV movie it’s based on can be found on YouTube starring a young Jennifer Jason Leigh, and let me tell you: It. Is. Horrific). I couldn’t look away at the graphic and detailed acts of self-destruction.

Horrifying, yes, but what is the point? It’s like watching the opening scene of a crime show where the victim is tortured and killed; sure, we feel bad for them, but we don’t know them long enough to truly empathize. A common theme in eating disorder books is that the main characters don’t have a personality outside of their disorder. They are flat, shallow characters, focused only on losing weight and hiding their illness. They are defined only by the terrible things that happen to them. Almost every conversation that Kessa has with any other character is about her illness, but we don’t know how Kessa feels about it Instead, we only get to watch her torment herself. Why is that interesting?

I don’t find my own inevitable demise at the hands of my traitorous mind interesting. Honestly, it’s pretty boring. A real book about eating disorders would be me sitting on the couch, sipping black coffee, eating baby carrots, and wishing I was dead.

But I guess that wouldn’t exactly create booming book sales.

Wasted: A Memoir of Anorexia and Bulimia by Marya Hornbacher

I discovered Marya Hornbacher’s debut memoir Wasted: A Memoir of Anorexia and Bulimia the summer before my senior year of college. I had high hopes. I thought reading a memoir straight from someone who’s lived through it would give me a sense of emotional support; she has lived through it and continues to live. I hoped I could find something to connect to.

Plot twist: it was even worse. Hornbacher detailed her own actions from childhood to her 20s with crystal clear recollection that sent chills down my spin. She documents her declining weight throughout the years, leading up to her final weight that left her near-dead and hospitalized. Her book, like the others, was a tale of self-destruction, of how she ruined her body to almost beyond repair.

I, too, could share my own horror stories. I could tell you about being elbow deep in my vomit after purging, trying to unclog my sink. I could tell you how I tried to rip open my stomach with a knife and my bare hands to remove the fat from my body. I could write it all down, every tiny, terrifying detail—but would you really know me? Would you feel all the complex emotions that drove me to that point? Guilt, denial, self-loathing, shame, embarrassment, pride, fear—we see none of those emotions in these books. Eating disorder books tell us what an eating disorder looks like, not what having an eating disorder feels like.

Why do people with eating disorders need to die in order for society to care about us?

That is the million dollar question.

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While I could not get the emotional support or feelings that I could relate to in these books, they did give me something else: tips and tricks on how to get sicker. In their detailed accounts of agony, these authors told me exactly how to stay sick, and how to keep it a secret. Things that wouldn’t have occurred to me were laid out clearly for me to use. And I knew they would work: they came directly from doctors and fellow anorexics.

Somehow, while trying to research my illness, I’d built a reading list on how to die.

Eating disorders are mental illnesses with physical symptoms; it’s part of the reason they have the highest mortality rate of any  mental illness. In my reading, I learned a lot about the physical aspects, (i.e. what my illness should look like), but I learned nothing about the mental aspect.  People say “you need to gain weight” or “you just need to eat a sandwich” because that would heal the physical symptoms. But you still have a disordered relationship with food, with how you look in the mirror. My illness didn’t start because I was a dancer or cheerleader, or because someone called me a mean name on playground, but as a way of coping with my major depression and anxiety- it was a side effect of my other mental illnesses. My sickness didn’t happen when my BMI dipped to an unhealthy range and didn’t stop when I got to a “healthy” weight again. I was always sick. I’m still sick as I write this. Yet, if there is one thing I have learned from my decade-long illness it is that there is no such thing as a rock bottom, and no such thing as getting “fixed.” Having an eating disorder is a lifelong uphill battle you will need to fight every day. But that doesn’t mean it will be a bad life.

Eating disorders happen not to characters in books, but to people. Real people with jobs and hopes and dreams and personalities that have nothing to do with their illness. I am anorexic, but I am also a hundred other things people forget when they hear my condition. We suffer silently, we suffer messy days of inner chaos that you don’t get to see; but through the suffering, we have a thousand other emotions that deserve to be told, too.

We are not pretty dead girls. We are humans fighting a silent war.

We have a story to tell.

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If you or someone you know is struggling with an eating disorder, there are people who can help:

https://www.nationaleatingdisorders.org

Toll-Free phone number: 1-800-931-2237

For 24/7 crisis support, text “NEDA” to 7417431.