We need to reject the false narratives around anorexia.
Illustration by Aidan Koch
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We Need to Reject the False Narratives Around Anorexia. I Can Start by Telling My Story.

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We Need to Reject the False Narratives Around Anorexia. I Can Start by Telling My Story.

Read this first.
Dec. 7 2015 5:00 AM

There Once Was a Girl

Against the false narratives of anorexia.

My parents have a small framed photograph of E and me in their upstairs hall. We must be 6 or 7. We are smiling in someone’s backyard, our heads damp from running through a sprinkler, and we wear matching checkered bathing suits—mine pink, hers blue. My sister is lissome. To my eye, critical even now, I’m a little chubby. We look nice together, like two parts of a whole, both grinning. We look like we know all each other’s secrets.

A neighbor has painted a Princess Jasmine diadem on my forehead—a brilliant band of turquoise with a fat yellow jewel in the center. I think I remember how excited I was, feeling the tickle of the brush and the colors spreading over my skin. E isn’t wearing face paint in the picture. I think I remember that, too—my sister turning the offer down, on some level aware that she needed no embellishment.

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As I grew up with that photograph, I started to see it differently. At first I loved my Jasmine crown, but eventually the bewitching strap of blue began to strike me as tacky. It had something in common with the gaudy excess of my stomach curving out beneath my swimsuit. I came to understand my nature. I was the girl who used every art supply in the box instead of picking the best few; I told circular, giddy stories; I flailed around the pool, the slowest swimmer on the team. I realized how elegant E had always been, how she eschewed splashy statements even in kindergarten. She had a native understanding of an aesthetic principle that I couldn’t grasp. Less is more. 

If you were to ask me when the spores of anorexia first crept into my heart, that’s the moment I might point to, me standing in front of the picture in the hall and seeing it with fresh eyes. There. Start there.

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Here is a story for you. My parents, D and J, are lovely and kind and interesting people. My twin sister (we’re fraternal) is beautiful and accomplished. When we were 14, my sister developed anorexia, impelled by perfectionism, genes, whatever spectral lever it is that tilts the cosmic pinball board and then everything changes. When we were 17, I developed anorexia, impelled by some unpoetic cacophony of motivations: wanting to be close to her, wanting to compete with her, wanting to rescue her, wanting to cancel her out. E has a routine that’s more or less stayed the same since eighth grade—it allows her to eat (not much) and exercise (a lot) without really asking why. My parents raged for a few years against the routine but at this point regard it as normal-ish. (Their habit of ignoring it and at times facilitating it indicates something between denial and acceptance.) Are they wrong? Who knows. As I write these words, my sister is an exceedingly thin, charismatic, disciplined woman who does brilliant work in her Ivy League Ph.D. program, and is unhappy.

I, meanwhile, tried for years to undo what I’d done to myself. I saw nutritionists (and refused to follow the menus they gave me). I tried medication (taken sporadically). After college, I moved back to my parents’ house in Washington, found a spectacular therapist, and achieved a measure of clarity. It helped, strange as it may sound, that I was a miserable anorexic, convinced that the disease was deeply wrong for me yet unable to shake its influence. Until I did. The sunlight of the real world began to disinfect my brain. I had friends, books, a job I loved. I moved out of my parents’ home. I got better.

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Even now I worry I’m telling the story wrong. Is E unhappy? Did my parents enable us in our sickness, or were they just powerless to reverse the tide? I can hardly conjure those years of my life in memory without thinking I’ve committed some grave narrative sin.

I’m not the most reliable narrator. (To be fair, you probably aren’t, either.) I spin stories about people in order to understand them better, or to soothe or entertain myself. I sometimes balance my sanity on unstable materials—love objects that don’t stay put where I’ve left them. It can be hard to accept that your “characters”—Mom, Dad, sister—don’t belong to you, the tale-teller.

The narrative impulse is one entwined with anorexia itself. Being sick means constructing an alternate reality, strapping it in place with sturdy mantras, surrendering to the beguiling logic of an old fairy tale: There once was a girl who ate very little. There once lived a witch in a deep, dark wood. Anorexics are convinced that they are hideous, bad, and unlovable. At the same time, they are constantly soliloquizing about their sacrifice, their nobility, their ethereal powers.

“[A]norexia emerges less palpably as a humiliating physical and psychological affliction than as an elevated state of mind, an intellectualized hallucination,” wrote Ginia Bellafante in a review of Going Hungry, a collection of essays on eating disorders. “ … To read Going Hungry is to suspect an effort has been made to convince us there is no such thing as a superficial anorexic, no creature whose radical self-regulation comes unaccompanied by an impressive imagination or intelligence.” Was this—an overestimation of sensitivities, a beatification—my particular problem? I’m not sure. In the depths of my disorder, I didn’t regard myself as a fragile poet-fairy or believe I could paint with all the colors of the wind. But perhaps the myths of beauty girdling anorexia fed into how I idealized my sister, how I assumed that she presided over aesthetic secrets I’d never understand. And I certainly permitted the voice of the disease to mingle confusingly with my parents’, so that I ended up ascribing to them the hate I sometimes felt for myself. A kind of self-protective/self-destructive logic drove me to pin my family and me on a storyboard.

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The anorexic impulse to lyricize one’s illness is a prescription for estrangement, for controlling and muffling the messy truths about who we are. Despite its promise of expressiveness, it is the enemy of writing. It is certainly the enemy of living. We need to tackle the false narratives clustered around eating disorders in our culture—clichés that vex and complicate treatment, contributing to low recovery rates and a frightening death toll. By looking harder at both the literature and the science of anorexia, we can expose where the plotlines conflict, where the self-deception and self-sabotage sneak in.

The most specific thing I can contribute is my story. I want to tell it as honestly and accurately as I can.

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Anorexia is one of nature’s bleaker illustrations of “monkey see, monkey do.” I learned how to torture my portion of dinner—to endlessly deconstruct and rebuild and microwave it—from my sister. I also learned from her how to sit up straight, even in front of the television, clenching my abs and jiggling my legs. Most of all, I learned to say no, over and over, regardless of rhyme or reason or incentive or penalty. No, I will not eat starch. No, I will not have another bite of chicken. No, I do not want dessert or breakfast or lunch; I am not hungry; I will not use my common sense; no, no, no. I am sure E picked up equally delightful tics from me. Her methods were openly antagonistic, mine more deceitful. I used to throw away food, hiding it in napkins or slipping it to the dog. (“K is Ziggy’s favorite,” Mom would tease as our flop-eared pit-bull mix trailed me around the kitchen. “I love you too, buddy!” I’d trill, while fixing him with a lethal stare: Not. One. Fucking. Word.)

The contagion also spreads through language. The charge that anorexia memoirs are “how-to manuals in disguise” is well-established by now: Writers from Emma Woolf (Virginia’s great-niece) to teens on eating disorder–related Internet forums have faced criticism for wreathing their anorexia stories in beckoning particulars: minutes on the treadmill, target weights attained, calories consumed. Thanks to the disease’s competitive nature, these tidbits, ostensibly offered as warnings, can read as inspiring benchmarks or even veiled instructions. Recalling her student-sensei relationship with Marya Hornbacher’s Wasted,a cornerstone, a beloved, poetic contemporary classic” of eating disorder literature, the writer Kelsey Osgood reports that she “incorporated some of Hornbacher’s tricks into my own weight loss repertoire.”

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More fundamentally, though, anorexia is an inveterate liar whose grand theme is your identity. Because the channels through which it flows and acts are so often linguistic, the disorder has inspired a perverse literary tradition, replete with patron saints (Catherine of Siena, herself a twin, who recorded the details of her miraculous asceticism in letters she sent to aspiring female mystics), glamorous elders (Emily Dickinson, Anne Sexton, Sylvia Plath), tropes (fairies, snow), and devices (paradox, irony, the unreliable narrator). “Anorexic literature” commits the inherently literary, self-mythologizing qualities of anorexia to paper. From the novels of Charles Dickens to the poetry of Louise Glück, it contains and reproduces something more amoebic, perhaps more dangerous, than dieting tips: a specific persona and sensibility.

Who is this gauntly bewitching character? Ask Persephone, the goddess undone by six pomegranate seeds, or one of opera’s frail, tubercular heroines. Ask Sia singing scratchy-voiced about hurt and smallness, or even Tinker Bell, wasp-waisted, gossamer-winged, sacrificing her body for love and literally a goner if we don’t clap for her. I don’t mean to be snide: The eating-disordered quest for an audience speaks more to profound self-alienation than to any diva tendencies. Anorexia is the mental health equivalent of the red shoes that make you dance until you die. It is a performance—of femininity, of damage, of power—that turns into a prison. The choreography becomes so absorbing that you can no longer access your own will or desires. You may require an external party to confirm for you that you exist.

We’ve long linked pathological thinness to profundity or poetic sensitivity. The roots of the romance go back to Catherine, who felt closer to God when she stopped eating and later, unable to consume food in spite of herself, considered her affliction holy. If excess flesh on a woman implied gluttony (a sin) or pregnancy (a shame), emaciation helped demonstrate the soul’s dominion over the body. Anorexia mirabilis—the saintly loss of appetite—signaled an embrace of Christ-like abnegation and suffering, or else a spirituality too pure to incline toward earthly pleasures.

And guess what? The archetype of the fasting mystic had a daughter. Equally lovely, equally slender—in her the delicacy of spirit won out once more over the coarseness of tissue. She rebelled against her mother by applying her native rigor not to prayer, but to an artistic sort of femininity. Think Jane Eyre, “delicate and aerial,” or Elizabeth Gaskell’s Ruth, “little” and “beautiful lithe.” Consider Dorothea Brooke from Middlemarch, her “hand and wrist … so finely formed that she could wear sleeves not less bare of style than those in which the Blessed Virgin appeared to Italian painters.” That Mary reference is not coincidental—like her mom, the new anorexic was pure and asexual. Yet she was also a creator, driven and intense. As Florence Nightingale wrote in 1852: “If [a woman] has a knife and fork in her hands during three hours of the day, she cannot have a pencil or brush.” The new anorexic’s hands overflowed with pencils and brushes. When she suffered, her suffering became oil paintings, poetry.

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Illustration by Aidan Koch

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In her 2002 book Victorian Literature and the Anorexic Body, Anna Krugovoy Silver shows how the economic and social realities of 19th-century England conspired to idealize female slenderness. “The middle-class Victorian woman,” she argues, “was represented as highly spiritual, a creature of disinterested love and nurture, the moral center of the home and of society as a whole.” To demonstrate their unearthly virtue, women were encouraged to suppress their appetites, especially at mealtimes, at which “if you decline [food or drink] gracefully,” according to one etiquette manual, your companions “will appreciate the delicacy which makes you refuse.”

These values threaded their way through the literature of the time. As vampire tales like Bram Stoker’s Dracula and Sheridan Le Fanu’s Carmilla registered a hyperbolic disgust at the idea of female hunger, Charles Dickens was subjecting ethereal young girls to picturesque, ennobling deaths. What Silver calls Dickens’ “poetics of anorexia” manifests in the character of Agnes in David Copperfield. We never see her body and know only that David sentimentally associates her with “the soft light of the coloured window in the church.” Little Nell, from The Old Curiosity Shop, seems equally insubstantial. “So spiritual, so slight and fairy-like a creature” that she is constantly fainting and swooning, Nell eventually “perishes of want,” her “pale face and wasted figure” a moral beacon to her friends.

As these fragile sylphs wafted through Victorian fiction, a different kind of archetype was materializing in the popular imagination. She took after Christina Rossetti, the Anglo-Catholic poet who, according to scholar Paula Marantz Cohen, “probably developed anorexia in her teens and continued to suffer from the illness in some form ever afterward.” (Rossetti’s poem “Goblin Market,” starring the abstemious Lizzie and the gluttonous Laura, may sublimate the dual desire to binge and restrict.) Emily Brontë was another influence. Whether or not she contracted an eating disorder as a teenager—at least one biographer has suggested she wrestled with “self-starvation and pining” at boarding school—her slow death by consumption gave the culture an indelible image of genius wasting away. In the United States, a spectral Emily Dickinson gained admittance to the clubhouse. Virginia Woolf, Sylvia Plath, and Anne Sexton soon followed, a clique of brilliant madwomen bent on self-destruction. By the time my painter grandmother first started monitoring her daughter’s waistline in the 1950s, the anorexic artist trope was in full bloom.

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In Going Hungry, young adult author Francesca Lia Block equates anorexia with “that perfect blend of angelic and demonic—the faerie. Ethereal, delicate, able to fly.” She recalls her time under the sprite’s spell in an outrageously irresponsible bout of lyricism: “I stared out the windows at the twisting, starving trees, the silvery, sorrowful sky. I wrote strange, surreal poetry. My father stopped at a Dairy Queen, and I ate a vanilla cone. It tasted fearsome and frightening. Like mortality.”

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It makes me wish there were a Bad Sex in Fiction award, but for thinspo. And yet—who was one of my favorite authors as a preteen? I remember 1999, when I was 11 years old, my whole being magnetized to Block’s waifish bohemians, her purple-haired witch babies and genie changelings. I remember the spicy explosions of jacaranda, the porch scents of tangerine and cinnamon, all the deferred deliciousness of imaginary pleasure. Block recounts “a kiss about apple pie a la mode with the vanilla creaminess melting in the pie heat. A kiss about chocolate, when you haven’t eaten chocolate for a year.” Why didn’t it strike me as weird that she always used food metaphors to describe nonfoods? That her protagonists were unfailingly languid and small-boned and lean? Most of all, I remember the moment in The Hanged Man when the heroine declares: “I will be thin and pure like a glass cup.” A glass cup! It seemed impossibly poetic. This was years before Alice Gregory poked fun at Block in the New Yorker for composing “laughably elliptical passages that read like demented ads for diamonds or bottled water.”  

Though their effect is hard to quantify, “a lot of war stories and memoirs out there … glorify the specialness and suffering of anorexia,” says Dr. Angela Guarda, director of the Johns Hopkins Eating Disorders Program. “Anecdotally, patients often acknowledge that these writings romanticize the disorder,” and that “reading them can be triggering and worsen their ED.” While the actual disease is not glamorous at all, Guarda reiterates (do you remember the boring calorie records from Lena Dunham’s Not That Kind of Girl? Imagine them as the script for your entire life), “the idea of anorexia often is.” Doctors at Johns Hopkins generally discourage patients from reading most autobiographical accounts of eating disorders, including the not-inconsiderable portion written by authors who “describe themselves as recovered and appear to still be ill.”

But what happened with me and Block felt like a slightly different thing. I wasn’t anorexic (yet), she wasn’t writing an anorexia memoir (explicitly), and I’m not sure how anyone could have known to intervene.

Sadness is “interesting,” notes Leslie Jamison in her magisterial essay on female pain, “and sickness [is] its handmaiden, providing not only cause but also symptoms and metaphors: a wracking cough, a wan pallor, an emaciated body.” Children want desperately to be interesting. Block’s slender, graceful wraiths with their dark secrets appealed to my ambition and sense of drama, not to mention my kiddie narcissism. Here’s one Blockian character indulging in a Petrarchan inventory of her own gaunt figure: “My shoulders, my collarbone, my rib cage, my hip bones like part of an animal skull, my small thighs. In the mirror my face is pale and my eyes look bruised. My hair is pale and thin and the light comes through.” Bones, small, mirror, hair, pale, eyes, thin, light. The single syllables stream by like stars, all of them smooth, bright, reflective, or feminine. The hair’s thinness allows the light in. Projecting myself into that body, I think I loved the implication that someone might pay close enough attention to me to worry about my collarbone.

Was my collarbone interesting, though? Did it “unfurl like a bird’s wing”?

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Meet (again) the Ws, who at this point in the tale will play the role of “trigger”: a lithe, fashionable, diet-conscious mother; an athlete father; my sister, whom I came to regard as anorexia incarnate. We’re a volatile clan, skilled at setting fires, but scared of them too. Two summers ago, we traipsed around Ireland together, cushioned in one another’s determined, capacious forgiveness—an apparently inexhaustible resource when things are looming that you’d rather not face.

One night in Dublin, we had a dinner party to go to at 7. It was already 5, and my sister wanted to go for a run. At our hotel, she hurriedly suited up in workout gear. I did too—I had seen an elliptical in the hotel gym and planned to do that while E engaged the treadmill. About 20 minutes into our respective workouts, disaster struck. E, who needed an hour for her run and was already anxious about time, realized that the Irish equipment measured distance in kilometers, not miles; she said she’d have to start over, outside, using an app on her phone. But because she didn’t know her way around Dublin (and would have to wait at lights), the run would really require an hour and a half. It was 5:45. We were supposed to be showered, dressed, and ready to go to dinner at 6:30.

My sister burst into tears and slammed the treadmill’s stop button. “Tell Mom and Dad I’m going to be late,” she sobbed, sprinting toward the lobby. It may seem strange to you that I didn’t run after her or try to talk her down. It is strange. “Be safe,” I texted her, feeling helpless and, I guess, virtuous. “Come back soon.” And then I texted my parents: “E will be late.” That was, I assured myself, the best I could do. I ellipticalled for 10 more minutes and went upstairs to get ready. 

The four of us arrived at the dinner party a little after 8. I feel like my usual tattletale self recounting the rest—how she sat at the table eating nothing while the rest of us filled our plates, how she took delicate sips of water as the festive streams of red and white wines bounced against the sides of our glasses. Do you believe me? I drank too much—I need to put that in. Otherwise things might have unfolded differently. My sister was regaling the group with grad student tales. (They found her so delightful. I hated that I cared.) I was sitting too close to my mom on a couch, my nose full of perfume. A sliver of me was enjoying the evening while the rest was about to boil over—with what, I’m not sure.

And then, seamlessly, we were back at the hotel, and it was very late. My parents’ room was next to me and E’s. Before we parted Mom pulled us both into a hug.

“You girls were charming tonight,” she said. “I’m so proud of my beautiful daughters.”

“Proud?” I spat. “We were an hour late. And she didn’t eat anything!” I stared into my dad’s face, now a disappointed dad face.

“Please don’t do this now,” he said.

Like me, my mom had had a little too much to drink. We are both hotheads. “Shut up, K,” she snapped.

E rolled her eyes and went inside. Good move, E. I followed my parents into their hotel room.

“Why am I the villain here?” I asked.

My mom walked into the bathroom and slammed the door.

“It’s very upsetting to us that you’re still so obsessed with your sister’s food,” Dad began quietly, unlacing his shoes. Agony. The whole stilted speech was coming, I knew, as if a teleprompter had flickered to life on the opposite wall. Compassion, careful phrasing, concern, rebuke. “Your need to compete with E is disordered. It tells us you are sick. If you’re keeping score, it tells us you are sicker than she is.”

I’m sick? I ate dinner like a normal person. I didn’t keep everyone waiting because I was so wedded to my exercise routine.”

“Why is it so important to you to tear E down?”

I didn’t want to tear her down. I wanted her to stop doing the things she always did, which were perhaps a part of her. Was that the same thing? Being “good”—exercising in moderation, feeding myself—felt so futile sometimes. Yet it wasn’t simply that I was denied my pat on the head for recovering. (You are never “recovered” from an eating disorder, always in the eternal participial purgatory of “recovering.”) What terrified me was my parents’ vision of me: corroded by envy and bitterness, always worrying at my twin like a little maniacal terrier. Whenever this frame snapped into place—when the complicated fear and sadness I felt for E was recast as vindictiveness—I felt like I was aboard a boat that had suddenly rolled on its side.

Lapping seductively at the joints of the craft was the cold, dark water I knew. It said that E’s behavior was not really crazy at all. That one should sup not on salmon and green beans but on scintillating conversation and small exquisite sips of Perrier. Dive in, beckoned the water. Be beautiful again.

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Maybe Louise Glück could teach me how to be beautiful.

That’s what I thought in college, when I signed up for my first poetry class. The conscious hope was probably closer to Maybe Louise Glück can teach me how to write beautifully, but, in practice, they amounted to the same thing.

If Block embodies the anorexic sensibility at its most childish and theatrical, then the poetry of Glück (another Going Hungry contributor) gives it a mature shape. Excising and refusing her way into loveliness, Glück distills in her first few books something of the anorexic mindset. She distrusts flourish, noise, and glitter. She sends critics scrambling for stern phrases like “lean intensity” and “exacting precision.” Just as an anorexic returns again and again to the same menu ingredients, the same routines, Glück shuffles and reshuffles her ascetic hand of nouns: pond, ice, hill, moon, stars. These early poems read as meticulous renunciations, careful puncturings undertaken in order to pare back the many false things from the few true ones.  

Depressed and isolated in my post-college eating disorder, I dwelt obsessively on a trio of lines from “Persephone the Wanderer”: “Unlike the rest of us, she doesn’t know/ what winter is, only that/ she is what causes it.” For me, it gave anorexia the status of a season, dignifying it with myth.

During my eating disorder years, I dreaded the chaos I might unleash at any moment, my secret flaws irrupting in plain sight. Anorexia told me I was gross but promised me safety as soon as I attained some enchanted state of skinniness. My perfect body would be my charm against interior disaster, sheltering me from the storms of the Underworld, enfolding me in eternal summer.

I starved, in other words, to acquire that old classical capability: metamorphosis. We tell stories for the same reason—to transform, elevate, and save.

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A fantasy of anorexia: total expressivity. See the anorexic’s sadness, legible on her anatomy, her inner life and emotions immediately present to anyone who looks at her. In a reverse transubstantiation, flesh becomes word, becomes character. Only the most authentic artist could possibly live her art like that.

By definition, a sign means something. What does a body mean? Tell me in words free of romance. Free of blossom and subterfuge. Tell me what winter is.

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Anorexic literature, Jamison says, is “nostalgic for the belief that starving could render angst articulate.” Its valorizing metaphors—“bone as hieroglyph, clavicle as cry”—ascribe “eloquence to the starving body, a kind of lyric grace.”

I have nothing pretty to say about my body when I get too thin. My skin dulls and develops scaly patches; my oversized noggin bobs on my pencil-neck like an idiot balloon. Eating disorder memoirists love to fetishize hipbones, but I am here to tell you that mine made zero aesthetic contributions to my stomach area. My hair! Stringy, limp, bad for the Jews.

But unloveliness aside, instrumentalizing my body—presenting it for others to read like a character in a text—proved a highly effective way of losing myself. I don’t mean that simply in the theoretical sense. I mean that the act of starving yourself is one of the most alienating experiences you can possibly have. Have you ever tried to do anything on a profoundly empty stomach? Despite myths about increased concentration, intensity, or imagination, you feel like a trace of grime on a countertop. Sure, hunger energizes you at first—experts disagree over whether hyperactivity in anorexics is primarily the result of hormonal cues or the conscious desire to burn calories. But then the fatigue sets in. You feel like a torn net through which the thoughts pass, hazily. You cannot speak or write or do. Starving doesn’t transform your life into one glorious act of self-expression. Starving silences who you really are.    

A more scientific explanation for this is that anorexia eats your brain. As Arielle Pardes writes in Vice, “When your body is in a period of starvation, it uses the fattiest tissue first—which, in the absence of body fat, is the brain. The brain is literally broken down, piece by piece, causing mental fogginess, lack of concentration, and an inability to focus.” (Luckily, such volume loss is usually reversible with weight restoration.) Starvation also reduces cortical blood flow, further slowing the cognitive machinery and allowing anorexia’s distortions to take root. 

Meanwhile, I love to write while eating. I love to mess around with language while snacking noisily on popcorn or peanut butter. I love buying sour watermelon gummies for 99 cents at the CVS downstairs from my office and alternating them with the occasional Hershey’s Kiss, its lush mwah of chocolate, all while riffling through synonyms in my head or tracking an impression to that place where it sheds its soft adolescent waver, coalescing into thought. At these moments, I know that I am investing too much meaning in food. But it’s as if eating has become both an occasion for and an expression of happiness, a kind of joyful celebration for its own sake.

“To be eggheaded about it for a second,” says E on the phone, “your eating/writing scenario embodies a fantasy of unmediated openness, an ideal and reciprocal exchange with the world. You are producing and taking in. You aren’t trapped inside yourself, sealed off from pleasure or generosity. It’s like you’re acknowledging your interdependency with the universe, and how that connection is creative, and how as a writer your story might be other people’s story too.”

(And her story? I could ask her, but I don’t.)

“I don’t want it to end,” I say.

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In 1873, the French doctor Charles Lasègue and the English physician Sir William Gull (who personally practiced on Queen Victoria) independently published papers defining anorexia nervosa, the nervous loss of appetite. For Lasègue, the anorexic was “a young girl, between fifteen and twenty years of age,” who “suffers from some emotion which she avows or conceals.” “Generally,” he continued, the symptoms relate “to some real or imaginary marriage project, to a violence done to some sympathy, or to some more or less conscient desire.” In a cosmically apt coincidence, Lasègue also fathered the Waldman-friendly concept of folie à deux—“a delusion or mental illness shared by two people in close association.”

Gull, for his part, prescribed “various remedies … the preparation of cinchona, the bichloride of mercury, syrup of the phosphate of iron, citrate of quinine and iron.” Alas, “no perceptible effect followed their administration.”

So dawned a long history of people getting anorexia wrong. We still don’t know exactly what causes it. In part this is because the type of controlled longitudinal study that would shed light on etiology is too vast and expensive for most researchers to undertake. (Anorexia afflicts only 1 percent of the population, so any experiment tracking a randomized group of people to see who falls ill would need thousands of participants to get significant results.) It’s also because the U.S. underfunds eating disorder research: The National Institutes of Health allots only $1.20 in research dollars per affected ED patient, compared with, for instance, $159 per patient with schizophrenia (which also affects about 1 percent of the population). Mostly, though, it’s because eating disorders are savagely complicated, the consummation of multiple interwoven genetic, environmental, and cultural factors. The history of anorexia is a history of simplistic explanations—of false narratives—that derive their staying power from the tiny grain of truth each one contains.

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Illustration by Aidan Koch

A Selection of Anorexia Narratives Through History

1. Hysterical Women
As Julie Hepworth points out in her book The Social Construction of Anorexia Nervosa, the terms anorexia and hysteria were used interchangeably throughout the late 19th century. Lasègue proposed that hysteria disrupted the “gastric centre,” prompting food aversion. Gull originally referred to anorexia as hysteria apepsia, on the theory that neurasthenic women suffered from a pepsin imbalance that dulled their appetites. In his 1884 lecture series On Visceral Neuroses, physician T. Clifford Allbutt suggested that, like hysterics, fasting girls were responding histrionically—aka overreacting—to the day’s gender imperatives. The “invincible distaste for food,” he said, reflected a normal desire to tame “animal propensities” gone awry in “high-spirited” patients.

2. An Endocrine Disorder
In the early 1900s, doctors performed an autopsy on an anorexic woman and discovered a shrunken pituitary gland. Hypothesizing that the disease arose from low levels of pituitary hormone, they proposed a treatment in which eating-disordered patients were injected with pituitary extract. When that didn’t work, the sufferers had their bloodstreams flooded with thyroid juices, insulin, and estrogen. It took until 1940 or so for lackluster results—apparently hormone shots can help treat an eating disorder, but only when they are accompanied by high-calorie foods—to discredit the notion of anorexia as a purely endocrinological illness.

3. Fear of Pregnancy
In 1939, George H. Alexander, a Freudian analyst from Rhode Island, published a paper describing an anorexic teenager who started dieting after two of her classmates got pregnant and left school. Alexander theorized that his patient was in thrall to a paranoid fantasy in which “fat” equaled “expecting” and food symbolized an “impregnating agent.” The suspicion that anorexic individuals starved themselves to quell an irrational terror of pregnancy took two decades to shake.

4. Controlling Moms, Indifferent Dads
With the rise of family systems therapy in the ’60s and ’70s, doctors tried to divine answers to the anorexia question in the entrails of household dynamics. Eating disorders were (and occasionally are still) viewed as veiled power struggles between compliant kids and pressuring mothers. Silver, the author of Victorian Literature and the Anorexic Body, writes that anorexia “is, at least in part, a power stratagem in which a girl refuses to eat in order to gain influence and attention in her family.” The typical family in this scenario is “controlling and non-confrontational,” the girl “a goal-oriented perfectionist” who “often has a problematic, conflicted relationship with her mother.”

5. The Patriarchy
In the ’80s, feminism transformed our understanding of anorexia once more. Books like Susie Orbach’s Fat Is a Feminist Issue and Naomi Wolf’s The Beauty Myth raised awareness about the unrealistic representations of female bodies in media. Eating disorders became potent symbols of the way society expected women to turn themselves into broken ornaments, shrinking their identities and ambitions. “By the ’90s,” wrote Going Hungry editor Kate Taylor in Slate in 2005, “health-class presentations on eating disorders often involved rifling through magazines and discussing how unreasonably skinny the models were.” If we could only change societal beauty standards and diet culture, we could defeat anorexia for good.

None of these narratives are entirely without merit. Hormones probably do play a role in eating disorders. Many women get sick on the threshold of puberty, which has led doctors to isolate estrogen as a possible precipitating factor. Both leptin (a satiety hormone synthesized in fat tissue) and ghrelin (a hunger hormone produced in the stomach and pancreas) are processed by the insula, an area of the brain that tends to malfunction in eating-disordered patients. Individuals with anorexia also demonstrate elevated cortisol levels, though their heightened stress could as easily be a corollary of starvation as a cause. 

And it is true that some anorexia patients have overbearing mothers. It is equally true that watching your daughter starve and exercise herself to death tends to activate your inner control freak. One 1995 study found similarly chaotic and unhelpful parental behavior at family dinners involving anorexic children and those involving children with cystic fibrosis, a condition in which the patient is often too sick to eat.

And it’s true that a desire to forestall growing up and all the adult milestones that entails—sex, marriage, pregnancy—might inspire a girl to start dieting. So could saturation in our thin-is-in culture. Any impetus that gets a teenage girl to begin restricting calories can trip the biological wire that detonates an eating disorder.

That’s what these explanations leave out: There is a biological wire. Otherwise, why wouldn’t we all have anorexia, inundated as we are in Photoshop, thigh gaps, and ambient pressure to look like Cara Delevingne? (As Guarda, of the Johns Hopkins Eating Disorders Program, told me: “The same rain falls on everyone, which points to some degree of individual vulnerability.”)

Conversely, why would anorexia erupt in Ghana and among the Amish, where super-skinny frames aren’t in vogue? And if eating disorders were truly “about” control and remastering the self—especially in the face of a domineering parent—then how should we parse all the girls with perfectly happy, healthy childhoods who nevertheless fall under anorexia’s spell? I don’t remember feeling lost or powerless when I started dieting at 17. I was simply terrified of gaining weight.

The facts are: You are seven to 11 times more likely to become anorexic if you have a first-degree relative with the disease, and identical twins run a 50 to 80 percent larger risk of developing anorexia than fraternal twins. Individuals who go on to develop anorexia also exhibit common personality traits, such as introversion, perfectionism, sensitivity to criticism, vigilance, competitiveness, obsessiveness, and risk-aversion.

Biology is the piece of the puzzle that most directly contradicts societal myths about anorexia, and it’s the one that has the hardest time finding traction. Drawing instead on family systems theory, doctors with young anorexic patients often recommend what National Institute of Mental Health Director Tom Insel calls a “parentectomy”: “exclusion of the parents or caregivers from … the treatment plan.” But studies in both the U.S. and the U.K. show that “outcomes appear much better if parents are empowered and included.” Likewise, many therapists treat eating disorders by attempting to crack some psychological code—to unearth the mysterious psychic forces driving the illness. They should be prioritizing nutrition and weight restoration: Regardless of what precipitated the initial dieting behavior, a lion’s share of anorexic symptoms—from erratic hunger cues to obsessive thinking—result from physical changes to the starving brain. In other words, much of what propels anorexia is simply anorexia.

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“I don’t want it to end,” I told her.

On some level, we want stories to last forever, because stories unfold in ways that remind us of our lifespans.

Sometimes I start eating, and I can’t stop.

This part is hard to write, but it is also part of the narrative. As I dipped in and out of recovery after college, my disorder started to morph, losing any illusory claim it could have made on wan, heroic reserve or glamorous pallor or what have you. I stored up my denials. Then I binged on whole boxes of cereal, cartons of cookie dough ice cream, vats of raisins stirred into Nutella or hot fudge. The beginnings of these episodes were glorious—radiant increments of permission in a fascistically regulated life, Bosch gardens in which all the naked people were made of marzipan. But the middles and ends were crushing. The conviction, postbinge, that you are the most disgusting, worthless, execrable creature on Earth is total, as consuming a psychic pain as I have ever experienced. I’d walk to work wondering why people weren’t throwing things at me. If a colleague was kind, I’d feel so ashamed and undeserving my eyes would tear up. Time after time, the emotional fallout from bingeing proved so excruciating I would vow to never, never, do it again. And then—surprise!—I would.

This twist in the anorexia story often goes untold, because it doesn’t harmonize with the martyr-romance of the eating disorder. But overeating is a common response to the physiological and psychological stresses of starvation: More than one-half of anorexics will flirt with bulimia or binge-eating disorder on their path to recovery. “Restricting makes food more rewarding,” says Carrie Arnold, author of Decoding Anorexia: How Breakthroughs in Science Offer Hope for Eating Disorders. “After billions of years of evolution, our brains and bodies really don’t want to starve.” The chronically hungry contend with a primal drive not only to ease their immediate pangs but to counteract profound nutritional deficits. As Arnold explains, “a flashing neon sign in the eating disordered brain is saying GORGE NONSTOP.” For the most part, people with anorexia prove adept at ignoring it—until they don’t.

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My sister got the Honor Camper award at Interlochen Arts Camp one summer, and I felt so jealous I thought I might go blind. We hung up her plaque, a lovely mauve shield painstakingly dotted with white flowers. E’s name flowed across the middle in cursive. My parents couldn’t stop beaming. The next summer—possibly because the camp leaders felt bad about singling one twin out—I received the Honor Camper prize. But whoever was responsible for decorating that year’s wooden tablet was clearly pressed for time: The letters of my name loomed absurdly large on the left and were squished together on the right, no one had bothered with painting the background, there were no flowers. A big yellow smiley face spread like a mustard stain beneath the messy majuscules. “Congratulations, Honor Ogre!” was my first thought, gazing at my plaque. Apparently I wasn’t the cursive type.

Most of the women in my family are the cursive type. In their handwriting, E and J display a natural grace and fluidity that I despair of ever possessing. They both love Picasso’s line drawing of Don Quixote, in which the elongated, inked figure of the knight—more hieroglyph than human—bisects the page like a lance. I imagine that their bodies, abstracted by Picasso’s pen, would appear similarly gracile and lean.

Here I find myself reaching for antecedents and doppelgangers: Quixote, Jamison, Glück. I can’t let the simple fact of the disease sit, unvarnished.

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Illustration by Aidan Koch

Different people come to anorexia by different roads—if I wrestled with it in ways connected to a particular literary tradition and sensibility, that’s not necessarily how it goes for everyone. But I think we are all alike in our search for language to explain what happened to us, or what we did.

We are caught in a biologically based practice that begets more of the practice. Yet we layer over it a struggle that everyone experiences—the drive to express our identities and become who we are. Anorexia both is and isn’t a choice; the anorexic both is and is not herself. How do you make sense of that? I keep hoping that if I find the right words, I can earn a do-over, or at least transfigure the problem with meaning.  

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Anyone searching for the biological underpinnings of anorexia will eventually arrive at the insula. This is a brain region deep within the cerebral cortex that is responsible for (among many other things) monitoring one’s interior state. It is a way station that receives and integrates signals from other parts of the brain, weaving them into a coherent story about how you feel at any given moment. The insula informs you when you are tired or hungry, when a co-worker’s comment makes you angry, when the ending of a novel makes you sad. Individuals who are carefully attuned to their emotions and to their inner physical needs are said to have “high interoceptive awareness,” courtesy of a well-functioning insula.

Anorexics, even recovered ones, do not have well-functioning insulae. Their brain scans reveal lower connectivity and slower processing speeds in the region; researchers Ken Nunn and Bryan Lask hypothesize that people suffering from anorexia are less intuitive about the moment-to-moment state of their bodies and feelings. Maybe it takes these individuals a few extra hours to realize how exhausted they are and finally go to bed. Or they won’t notice that a conversation has stressed them out until their jaws start to ache from clenching. In one test of interoceptive awareness, anorexic women were asked to estimate, without taking their pulses, how many times their hearts beat in a minute. The numbers they came up with proved far less accurate than the ones guessed by nonanorexic women. Eating-disordered patients also tend not to do insula-mediated things like react with pleasure to pleasurable tastes or enjoy the thrill of winning money. Shown neutral images of food, their reward circuits may go haywire, firing off signals to the brain pathways governing disgust.

One of the insula’s most important—and mysterious—tasks is to construct body image: “a mental representation of what we think we look like.” To do this, it braids together information about how we occupy and move through space (proprioception), our inner feelings (interoception), and external cues (a jiggle in the mirror, a friend’s approving comment). Except that, as we’ve seen, the anorexic insula is relatively in the dark on interior states. To compensate, an eating-disordered individual may place an inordinate burden of meaning on outside signs: a number on the scale or a partner’s assessment of her thighs. This dependence on external feedback to constitute a self-image leads to what Italian researcher Giuseppe Riva refers to as “allocentric lock”—a kind of self-objectification in which one is constantly viewing oneself from the perspective of a third party. It’s hard to develop a sense of agency when your identity takes shape in the eyes of other people.

A 2008 study determined that anorexic and nonanorexic volunteers show similar patterns of brain activation when they look at unknown men and women. Yet after researchers presented the nonanorexic subjects with pictures of themselves, a whole different geography of cortex lit up. Not so for the anorexic patients: Gazing at the photographs of themselves that they’d provided to the experimenters, these women displayed the exact same map of brain excitations and dormancies that they had while looking at images of others. They were literally seeing themselves as strangers.

Perhaps it’s not surprising that certain types of hardship estrange us from who we are. Does the insula hypothesis tie into the anorexic penchant for narrative—for imagining oneself as a character rather than an autonomous individual?

And more: What if the physical fragility that Francesca Lia Block painted as so desirable is really a metaphor for something true about anorexics—a fragility of self? What if the disease asserts its identity because nothing else has?

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I used to flinch at that photograph of my sister and me in our bathing suits. Now I come back to it with questions in my hands. E was always perfectionistic and risk-averse—the anorexic profile. I spent so much time resenting her for “choosing” to act out her eating disorder. But looking at the image with more than a decade of hindsight, I feel like she never even had a chance.

I was the daughter who wasn’t allowed to touch the coloring books because I just scribbled all over them. And yet I had done this—I had seen what E’s anorexia had wrought, and I had decided: me too. I had skipped meals and counted calories and performed crunches until the illness reached through the mirror and grabbed me and it was too late. Were my parents right that (if I’m keeping score) I was the truly sick one? The girl without as potent a genetic predisposition who nevertheless called down the demon, mustered it through sheer force of will?

Then I look at the picture for a third time, and something else jumps out at me. E and I are both smiling hugely. We’re happy. She’s rigid, and I’m sloppy, but neither of us is sick.

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Illustration by Aidan Koch

Though it makes me sad, I love to imagine the alternate world in which the W twins never got anorexia, in which no circumstance held a match to our biological kindling and convulsed the lives we should have led. I love to imagine all the things we would have accomplished already, the relationships we would have nourished. I love to envision my mom and dad without the lines of worry on their faces from years of beseeching their daughters to eat, the relaxed holiday visits, the quirky interests we’ve all cultivated in so much time not spent squalling about food. I picture E and me standing next to each other, as adults, our bond unbroken, looking like two parts of a whole, two people who know each other’s secrets. 

Memory, though, has furnished me with the artifacts I have, and I can’t help seeing them through the gauze of the old story. I kneel on the floorboards of this attic and look into a box, one containing knickknacks from a gentler past: my dad’s sweaty, post-tennis bear hugs; the sound of my mom puttering around the kitchen in the morning as she brews coffee. Gingerly I take out and examine the delicate things. Each is light as an insect, its surface worn and luminous with use. I stare at the box, sadness opening in me like a flower. I am frozen, and on the stair I hear the footsteps of my life.

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Katy Waldman is Slate’s words correspondent.