Eating Disorders Kill. So Why Do We Get Them So Wrong?
Eating disorders kill someone every 62 minutes — and yet, too many misunderstand the most fatal mental illnesses.
Content Warning: This article discusses eating disorders and may be triggering to some readers. If you or someone you know needs help, call the National Eating Disorders Association’s hotline at 800–931–2237.
At least 9% of the worldwide population is affected by eating disorders. Over a quarter of them will attempt suicide. In America, eating disorder recovery centers have months-long waitlists. Within an ongoing mental health crisis, the eating disorder crisis has professionals worried.
And yet, the wider public is largely ignorant about the reality of eating disorders. Most are only aware of anorexia nervosa and bulimia, and even then only through stereotypes — Nina Sayers in Black Swan, Ellen in To The Bone. Neither of these depictions is inherently bad — both are true to the experiences of many eating disorder sufferers.
But they only portray one experience, one of thinness, of restriction. This is not the experience of most eating disorder sufferers — only 6% are underweight, and many have disorders that do not involve restriction or vomit-purging at all. This portrayal, therefore, is leading the public to make assumptions about eating disorders that do not accurately depict the vast majority of people with eating disorders.
When speaking to people who have struggled with eating disorders, I saw the harm that well-intentioned, but ignorant people can do. From misguided advice to seemingly-innocuous compliments, many people have been hurt by loved ones who simply didn’t know any better.
So, here, let’s talk about some of the defining emotional features of eating disorders, and why people with these conditions may act or react in ways that don’t make sense to outsiders. Names have been changed for privacy, but the stories shared here are real, raw, and important.
“I Wish I Was As Skinny As You Are”
No one sets out to develop an eating disorder. It starts, almost always, as something else — a desire to be more healthy, to fit beauty standards, or to simply find comfort in a difficult time. There are as many beginnings as there are people with eating disorders.
For Chloe, a current collegiate athlete, it started in the fourth grade. “My doctor had told my parents to “watch my diet and exercise”,” she said “My parents immediately signed me up for soccer and often commented on my weight and their desire for me to be thin. During elementary school, I had yet to develop signs of disordered eating, but this started a negative perception of my body and an obsession with weight.”
Further comments from her family only cemented disordered thoughts. “In 7th grade, I remember my aunt telling me, ‘I wish I was as skinny as you are now. You look beautiful,” Chloe said. “Comments like these furthered the growing idea that being skinny somehow increased my self-worth. As a result, I was constantly weighing myself to stay under my target weight. My body suffered. My periods became irregular and I couldn’t stay awake in class.”
To Chloe, thinness became an ideal — a symbol of health, of beauty, of success, of self-worth. Food became an enemy, an existential threat to the ideal, a sentiment that is sadly common amongst those with restrictive eating disorders. They warp one’s sense of good and bad, of right and wrong — it is not an exaggeration to say that restrictive eating disorder sufferers are scared of food, of gaining weight, because thinness quickly comes to be the measure of everything. No matter how it starts, many end up with that mindset.
For some, however, eating disorders start as a coping mechanism to outside changes. Food becomes something comforting or controllable, a way to soothe anxieties.
Robin, a student, traces their eating disorder back to their move to the United States to start college. “I think at first it wasn’t really about the food itself — food was a way for me to compensate for other things, like feelings of loneliness,” they said. “I think in part my autism might have played a part because, not having the tools to correctly manage anxiety, I would stim eat. I’d shove stuff in my mouth because I liked biting on it, even if I didn’t particularly love the taste.”
From there, guilt motivated them to begin purging. “I’d feel guilty after stress eating so I’d purge,” they said. “It got worse and worse until there were days that, between not nurturing myself and feelings of deep sadness, i was practically unable to get up and felt my arms be really heavy.”
For Robin, food was an escape from stress — and they’re not alone. Almost 30% of adults report eating to manage stress, a response that seems to have a biological root in the hormones that control stress and appetite. For some, like Robin, it turns into the binge-purge cycle of bulimia. There is no one way to come to an eating disorder, but the result is the same — suffering, health risks, and a deep feeling of shame.
“I Just Feel Awful About Myself”
Eating disorder sufferers feel a deep sense of shame — about their bodies, about their illness, and about their inability to measure up to what they feel they should be. Many eating disorders, especially restrictive ones, are competitive or aspirational: online eating disorder communities will post inspirational images, often of sickly-thin looking women, to push themselves and each other further into their illness. When they fail to meet the often-impossible ideal, shame sets in.
Sarah, who has been struggling with disordered eating since leaving home for college, experiences the competitiveness in her everyday life. “It hurts to see other people my age who look very slender and great, and I just feel awful about myself and the way I look,” she said.
Sarah is hyper-aware of her body after years of negative comments from family and friends. “The real problem started late in 9th grade. My best friend at the time was naturally extremely thin. I’m not sure why, but she started to point out the way I looked, how certain clothes fit me, and what I ate during lunch,” Sarah said. “My parents started calling me fat the summer after high school graduation. My mom and brother became these health and fitness junkies and started to push it onto me. They’d all make fun of me when I ate.”
Sarah’s friends and family shamed her until she internalized it. Her body is now viewed through a lens of comparison — less than, more than, better, worse. The mindset becomes almost instinctual to eating disorder sufferers and is one of the most difficult aspects to break out of when attempting to recover. Those who have struggled with eating disorders will, more often than not, have to keep guard for the rest of their lives to avoid or interrupt a relapse: it’s not easy to erase what can be years of disordered reprogramming.
“I’m Not Sick Enough”
Overwhelmingly, people with eating disorders report minimizing their illness — they tell themselves it’s not that bad, that others have it worse. They deny themselves the realization that they are sick and deserve compassion and recovery. And, unfortunately, their self-invalidation is sometimes supported by medical professionals.
Ren, a young adult who has struggled with disordered eating, reports self-invalidation that came, in part, because of expectations of thinness. “People told me they were proud of me for losing weight,” they said. “I tried telling my therapist and she brushed it off as part of my stomach issues. I decided I didn’t need to seek further help because I was still overweight even at my smallest size — everyone praised me for my weight loss.”
Ren’s experience is indicative of wider societal expectations forced upon eating disorder sufferers. They are expected to fall neatly into stereotype — the female, white, underweight anorexic. Reality is rarely that simple, and in some cases, stereotypes can kill.
The term “atypical anorexia” describes individuals who suffer from the mental state and behaviors associated with anorexia, but do not meet the weight requirements to qualify for a typical anorexia diagnosis, which specifies that one’s body mass index must class them as underweight. While those who are underweight are most likely to experience refeeding syndrome, the over-focus on low body weight creates a false idea that those who are at a “normal” weight are safe from the damaging effects of eating disorders. They’re not.
According to a 2019 Standford Medicine study, those with typical and atypical anorexia lost the same amount of weight in the same period, had equally low heart rate, low electrolytes, and cessation of menstruation — and patients with atypical anorexia actually had worse psychological symptoms. Atypical anorexics were more likely to begin at a higher weight than typical anorexics, which the study authors believe may explain the more severe psychological symptoms — non-thin people experience extreme pressure to become thin, which, for these individuals, led to disordered eating.
The alarming findings from the Stanford study cast a new light on atypical anorexia. The main cause of death in both anorexia and bulimia is sudden cardiac arrest, which occurs due to malnutrition and electrolyte imbalances leading to abnormal rhythms. As the findings of the Standford study show, atypical anorexics are just as likely to have low heart rate and electrolytes — in other terms, they have the same risk factors as typical anorexics. And yet, atypical anorexics are often dismissed — like Ren, they are praised for weight loss achieved by a potentially-deadly method. “In the most awful way, I liked the compliments,” Ren said.
“I Don’t Consider My Eating Disorder to be Bad”
It’s hard to recover when disordered behaviors lead to compliments and pride. One study found that 50% of patients with clinical eating disorders relapsed within six years. For those who experience eating disorders, recovery often becomes a lifelong battle.
But recovery isn’t as black and white as it seems, especially for those who do not seek treatment — up to 66% of people with anorexia, 38% of people with bulimia, and 50% of people with binge-eating disorder. For many who do not seek treatment to address the psychological barriers to recovery, disordered eating habits become a part of everyday life. Out of those interviewed for this article, only one sought and received treatment for their eating disorder — Chloe, after passing out in front of her parents, received treatment and reports being successful in maintaining healthy habits, despite occasional intrusive thoughts.
“I am so lucky that I was able to seek outpatient treatment,” she said. “I saw a therapist for 2 years to normalize looking at myself in the mirror, eating enough, and finding balance. Recovery has been tough for me. My body changed a lot. I no longer deprive myself of bread, white rice, and ice cream, and I feel so much better. There are days where I sometimes feel the need to look like how I did back then, but I remind myself of how much better I feel now and how good food really is.”
Chloe’s recovery experience is what we wish for every person who has struggled with disordered eating — but again, this illness is rarely so simple. Many eating disorder sufferers are caught in an in-between state.
Raven, who has suffered from eating disorders for years, has recovered from bulimia. “I would eat a lot, and then I would feel like I didn’t deserve to eat and I needed to let it out,” they said. “I recovered from it because I developed emetophobia [a fear of vomiting].”
But Raven still has binge eating attacks and restricts their eating for days afterward. They have also struggled with anorexia for seven years, and are not being treated for it.
“I wanted it to get treated, but I can’t get a clinic,” they said. “It’s the fear of being a specific weight. I always say that if I overstep that weight, I will kill myself. It’s very bad.”
Despite knowing their disorder is serious, however, Raven is hesitant about treatment — they minimize their disorder, and fear the changes recovery would bring.
“There are people who have it worse, so I don’t really consider my eating disorder to be bad for me,” they said “I don’t want it to change. I don’t want to gain weight because I feel like it would make me feel ugly. I know I will take care of it. I don’t know. It sounds so sick.”
Like Raven, many eating disorder sufferers are of two minds about treatment. Raven has recovered from one eating disorder and recognizes that their current one is still harmful, but still fears recovery. It can be frustrating for loved ones, but it’s normal for eating disorder sufferers to feel this way, simultaneously facing the truth and standing in denial.
Eating disorders are lonely illnesses, often hidden, and societally shameful. Eating disorders take up mental space, filling it with fear and self-loathing, and endless thoughts about food. It feels almost like possession — it makes the sufferer feel powerless to stop their behaviors, and they become unsure if they even want to. These disorders warp thoughts in ways non-sufferers cannot even begin to understand. For those who live long enough to attempt recovery, the scars will last a lifetime.
Conclusion
Every 62 minutes, someone dies of an eating disorder. While awareness is improving, it needs to focus on the truth of living with an eating disorder and removing the stigma associated with it. There needs to be more funding for recovery clinics, so people like Raven won’t have to stay on long waitlists for treatment. There needs to be recognition of the dangers of prescribing weight loss, so children as young as Chloe once was will not grow up to suffer from this illness. There needs to be social recognition of the damage body shaming can do, so people like Sarah and Ren will never experience the pain of feeling inadequate because of their weight.
Above all, there needs to be compassion for the unique circumstances and experiences of every individual plagued by disordered eating. Those affected by eating disorders are suffering — mentally and physically, and they deserve better.
Tori Morales (they/them) is an autistic college student writing about mental health, autism, and other topics. You can support them by using their Medium affiliate link to sign up for a Medium account or by buying them a coffee.
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