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By Ava Sylvester

I have an eating disorder. Anorexia nervosa, to be precise. Now, when I say that, what comes to your mind? Do you assume I’m just on an extreme diet or obsessing over five vanity pounds? Am I narcissistic and only concerned about the way I look? Do you picture me as a rich, white, suburban girl with no real problems but the ones she made up for herself? Perhaps you imagine I don’t eat, ever, and all I need to do to get better is have a burger. You’d be wrong, but you wouldn’t be alone in thinking this.

Our society has cultivated an image of eating disorders in general and anorexia in particular that’s so far removed from reality that we fail to recognize the suffering present in those around us and sometimes even in ourselves.

Misconceptions are more than mistakes and more than myths. They infect your view of me and others like me, filtering all the information you learn about me through a distorted lens. Worse still, the people who are suffering from symptoms of an eating disorder often hold these inaccurate views as well, denying they have a problem because they don’t live up to a stigmatized and distorted vision of what an eating disorder really is.

With that in mind, I’m providing a glimpse of what life with my eating disorder is like. Please bear in mind that experiences with eating disorders are as unique as the people who suffer from them, so I’ll share my story alongside more objective information for context.


An eating disorder is…

 starting a normal diet and figuring if you can lose weight at 1200 calories, why not 600? 300? 0?

I didn’t start out wanting to develop a debilitating mental disorder. Like many 14-year-olds, I started an ordinary diet in hopes to lose a little weight. Problem was, each pound I lost felt like an accomplishment beyond any I’d ever achieved, and I got addicted to the thrill and impatient for another hit. As journalist, molecular biologist, and eating disorder sufferer Trisha Gura writes in Lying in Weight: The hidden epidemic of eating disorders in adult women, “Disease usually emerges as a gradual slide: dieting evolves into perpetual starvation; or dieting forces ravenous hunger, which in turn prompts bingeing.” The eating disorder spirals downward from there, and “[e]ventually, a woman’s eating behaviors change the circuitry in her brain.” Put another way, what starts as a simple diet can–for people who are genetically or environmentally predisposed–turn into a full-blown eating disorder. Indeed, 35 percent of normal dieters develop disordered eating habits, like skipping meals and self-induced vomiting, and up to 25 percent develop a full or partial eating disorder.

restricting the amount of food you eat until your stomach shrinks and you forget what hunger feels like.

It’s been over 15 years since I’ve felt either hungry or full. For most people, the stomach releases a hormone called grehlin when it’s empty, and the brain responds by increasing appetite and the sensation of hunger. The longer it’s been since a person’s eaten, the more intense the feeling. A person who continually ignores these hunger cues, though, may develop a sort of ghrelin insensitivity. It’s like the brain learning to mute the starving screams of the body, an adaptation that can make anorexic behavior easier to maintain.

memorizing the calorie count and serving size of every food you eat.

Eli’s sister in To the Bone joked about her uncanny ability to estimate the calories in her dinner, and it’s not too far a stretch. Whether through deliberate effort or simply the habit of creating a continual list of my dietary intake, I’ve come to know the nutrition facts of my food better than I do the back of my own hand. Put another way, it’s no use trying to hide containers or food scales from me to try to stop me from counting my calories; I’ll do it anyway.

controlling your diet as if it meant you can control everything in your life.

I know, I know, but the control freak trope actually applies in my case. Eating disorders are like a coping mechanism: When I’m stressed, when I’m depressed, when I’m emotional, or when things in my life are out-of-control, I use food, or lack thereof, to modulate my emotions. Eating disorders emerge “as a means to survive extraordinary psychological pain,” writes Gura. Yet if the eating disorder is an escape from anxiety, it creates more of its own, perpetuating a vicious cycle. The overwhelming sense of anxiety I get after eating is unpleasant, and it’s far easier to avoid it by skipping meals. There’s also the cold comfort of calorie counting. All the problems in my life can be simplified if I just focus on the anorexia and its cold, clinical reliance on numbers. My worth becomes my weight, my dilemmas reduced to a dress size, and I can measure my progress as though leveling up in a video game.

feeling a sense of superiority when your friends complain of being “hangry” after not having eaten in four hours when it’s been four days for you.

With a lack of self-esteem, there’s very little I feel I can do better than others. What I can do? Starve. I don’t have a good job, I live paycheck-to-paycheck if not overdraft-to-overdraft, and I rely on others to drive me or help me walk because otherwise I might faint or have another seizure, but damnit I can at least have power over what I eat. At least I can restrain myself from taking out my emotions on others.

… lowering your weight goal again five minutes after hitting it.

I check my weight at least five times each day. Every time I so much as see a scale, I want to check it, even if it means begging my mom for a quarter to use the pay-per-use scale at the mall. Why? There’s a sickening, exhilarating high each time the number goes down, even if it’s coupled with the debilitating, crushing low accompanied by a gain. It’s a maddening roller coaster given that my weight tends to fluctuate around five pounds during the course of a day—something others have found true for them too—but despite the crippling lows, the highs of a lower weight are just about the only source of happiness I have left, and I’m constantly in search for another smile.

losing interest in anything and everything except for food.

Concentrating for more than a few seconds at a time becomes impossible, so the hobbies I once used to pass the time and passions I once devoted myself to become as compelling as drywall. I just don’t have the energy to delve into my work or studies when every waking moment is spent obsessing over food and anxiety over what and when I’ll be forced to eat next. Conversely, and strangely, the constant need to exert the willpower to starve leaves me vulnerable to rash and impulsive decisions, like a kid who stuffs a marshmallow in her face now because she just can’t wait five minutes to have two. That means that even while I can’t keep up with my current work, I’ll accept 11 positions in a matter of months, and while my hair falls out so much I don’t bother getting a haircut, I’ll dye it at 3 am. Careful, deliberate decision making takes too much energy; it’s far easier to have the instant gratification of something accomplished. It’s almost like the satisfaction of a meal.

…  going grocery shopping and putting back every item you pick up because you can’t justify wasting it on yourself.

After more than a few trips coming home empty-handed, my partner graciously took over the responsibility himself. Still, when I finally did come home with food for myself, I was so overtaken with anxiety over the mere presence of food I could potentially eat that I spent the night restraining myself from not just throwing everything away but also pouring bleach on top so I wouldn’t get desperate and try to eat them later. I didn’t do either of these things, of course, but it goes to show how much food can control my thoughts and how desperate starvation can make me.

…  avoiding mirrors because you can’t stand the sight of yourself.

Anorexia’s beyond appearances. The disorder’s made me look like a pregnant pancake due to bloating and chronic constipation, and I’ve seen more hair come out in clumps than remains on my scalp. My boobs and butt have turned to chest bones and a tail, given that the fat on my ass has wasted away enough for my tailbone to protrude. I’ve broken down in the makeup aisle hours before an old friend’s wedding because nothing could make me look presentable. It’s not the classic stereotype of seeing an obese person in the mirror instead of the skeleton I am; rather, I focus on the areas of my body that still have some fat on them–like my upper arms–and not on the areas that don’t–like my prominent and protruding ribcage.

…  wearing sweaters and two pairs of fleece pants in 90 degree weather.

Starvation produces a lot of physiological changes in the body, among them thermoregulation. Some of the physiological effects of anorexia include changes to person’s blood pressure, heart rate, and body temperature, causing a panoply of peculiar symptoms, from seeing black spots when I stand up too quickly to being unable to sleep more than two hours per night. When it comes to body temperature, though, I’m never warm. I spend all my free time in the smallest room of the house curled up beside a space heater set to full blast, and it’s still not enough. Between air conditioning in the summer and the axial tilt of the planet, it’s forever winter for me.

refusing to go to the emergency room despite heart attack symptoms because you’d rather die than be admitted.

Fortunately for me, a primary care physician later found no evidence of a heart attack or damage to the heart; unfortunately for me, the symptoms were likely due to an electrolyte imbalance. I might not be so lucky next time.

 having your mother check whether you’re still breathing at night.

Anorexia nervosa has the highest rate of mortality of any mental disorder. Between 5 and 10 percent die within 10 years, and about 20 percent die within 20. Only 30 to 40 percent ever fully recover.

… thinking that you’re faking it and don’t really have an eating disorder because a true anorexic is always two BMI points lower than you and eats half your intake.

This is where the stigma about eating disorders really seeps in: Many of us don’t think we have a problem because we don’t look or act like the stereotypical media portrayal. Thing is, while they may strike certain populations disproportionately, eating disorders can and do affect people of every age, gender, race, sexual orientation, socioeconomic status, and every other category of human you can name. Eating disorders strike men as well as women; about 20 million women and 10 million men in America will have a clinically significant eating disorder at some point, and the true figures may be twice that. Eating disorders strike people of all races too. And, according to Cynthia Bulik, professor of eating disorders, in her book “Runaway Eating,” the majority of middle-aged women demonstrate some degree of obsessive eating or pathological dieting. Clearly, we need to expand our idea of who can and does suffer from an eating disorder so we can recognize and treat the signs and symptoms.

  refusing to believe any of this is enough of a problem to stop.

If you or someone you know might be suffering from an eating disorder, it’s never too late to find help. Contact the National Eating Disorders Association helpline at 800-931-2237 or via instant message here. You can also contact the Crisis Text Line at 741741.