This essay is adapted from Emmeline Clein’s forthcoming book, “Dead Weight: Essays on Hunger and Harm.”

Alyssa first considered killing herself when she was 13 years old, upon realizing that a dress she wanted to wear for her bat mitzvah would not fit her. Suicidal ideation might seem like an extreme response to a too-small dress, but I and too many people I know can relate to the feelings of worthlessness, shame and, honestly, simple terror pulled taut through the body, inspired by the thought of existing in a physical form that feels too large. I never met Alyssa, but I’ve known and loved girls who lived versions of her life, and been one myself. I once stood on a bimah in a dress I hated, hating my body, teetering on the cusp of an eating disorder as I was anointed a woman by a rabbi. I’ve read so many stories with sad endings, written by women who didn’t make it out of the riptide of disordered eating. The voices of other girls saved me when I was standing at the edge of a cliff; Alyssa’s is part of a chorus and a canon, elegiac and graceful, echoing.

This essay is an adapted excerpt from Dead Weight: Essays on Hunger and Harm by Emmeline Clein. Copyright © 2024 by Emmeline Clein. Reprinted by permission of Knopf. All Rights Reserved.

Alyssa grew into a woman, but her eating disorder consumed her adult life. In the months before she headed to college, Alyssa “vowed to change her body.” This is a vow I’ve read in countless eating disorder memoirs, stories posted online and messages from friends — a commitment to self-shrinking that spirals into disease. Back for Thanksgiving and significantly skinnier after just a few months, she received what she called “a deluge of external validation that was irresistible.” Alyssa would finish college, attend graduate school and become a star academic, even as she struggled with anorexia.

More than 13 percent of girls will suffer symptoms of disordered eating by age 20. Only about half of anorexics and bulimics who receive treatment will ever fully recover (often after multiple relapses), and at least 20 percent will develop chronic illnesses or die. A recent report estimated the annual death count in the United States alone at more than 10,000. Dominant modes of treatment have dismal recovery rates; more than half of patients who receive “successful” hospital treatment will relapse within a year. Yet research into new forms of treatment is woefully underfunded even as expensive treatment centers proliferate, creating what a group of experts in the field recently called a “crisis of care.” This yawning vacuum is in danger of becoming a mass grave: Anorexia recently became the first mental illness for which a terminal diagnosis — allowing patients access to hospice, end-of-life care and, in states where it is legalized, medical aid in dying (MAID) drugs — has been proposed in the United States. People with this disease might soon be offered a diagnosis that affirms their conviction that their life isn’t worth saving, a diagnosis as deadly as their disease.

When Alyssa was 33 years old, her illness had reached a severe turning point: She had hypercalcemia, a condition in which blood calcium levels become dangerously high, risking heart and brain damage. She was physically stabilized in a hospital and quickly discharged with the suggestion that she enter residential eating disorder treatment immediately. She spent the next seven months trying to do so. Unlike any other disease in the Diagnostic and Statistical Manual of Mental Disorders, psychiatry’s classificatory encyclopedia, anorexia diagnoses require biometric proof of illness. Patients must meet a body-weight cutoff to be diagnosed, and for their treatment to be covered by insurance. In other words, people with a disease defined by the fear of not being thin enough are too often told that they are not thin enough to deserve care. (In fact, only about 6 percent of people with eating disorders present as underweight, a number that renders unsurprising the otherwise startling statistic that only around 10 percent of people with eating disorders will ever get treatment.)

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This is just one of the ways current treatments for disordered eating are counterintuitive and often sickening. Once you manage to enter treatment, your weight and caloric intake are obsessively watched and recorded, while eating is rendered theatrical and regimented. This approach reinforces the logic of eating disorders themselves — the obsession with minute changes in weight and an emphasis on rigid consumption rules and self-surveillance. Even when people do manage to access treatment, it often ends abruptly, as soon as patients regain enough weight to satisfy their insurer, which is often when they need holistic therapeutic support most desperately. Recovery is often tenuous, but when patients relapse, insurers often claim that the patient, rather than the treatment, failed. Enough “failures” lead insurers to mark patients “chronic,” rendering further treatment a bad investment.

So, an insurer might first refuse to pay for more treatment because the patient did not present as sick enough, but soon, as in Alyssa’s case, that same patient might be considered too sick to treat. According to one survey, 97 percent of eating disorder specialists believe their patients’ lives have been endangered by their insurer’s decisions, and 20 percent blame an insurance company for a patient’s death. The program Alyssa eventually received insurance approval for rejected her for being a single pound underweight; they directed her to a hospital, once again, for physical stabilization. Then the hospital again recommended she get holistic psychiatric, medical and nutritional care in a residential center, but Alyssa never did. She was not interested in repeating the grueling, demoralizing process of proving she was a deserving patient.

At age 36, Alyssa reached out to Dr. Jennifer Gaudiani, one of the founders of the ACUTE Center for Eating Disorders at Denver Health and a board member of both the International Journal of Eating Disorders and the Academy for Eating Disorders’ Medical Care Standards Committee. Gaudiani has called anorexia a “disease of despair,” one that often begins when people follow the dictates of diet culture, and one that is often exacerbated by a misguided medical establishment itself in thrall to diet culture, a compassionate point more doctors should be making. And so, instead, together, they embarked upon a course of treatment oriented around harm reduction. This plan let Alyssa maintain many of her disordered eating habits as coping mechanisms, even as she tried to renourish herself as much as she could bear to. But her long-term malnourishment had altered her metabolism so that any weight gain at all was difficult.

After nine months, she told her doctor she was “utterly exhausted” by the anguish she felt while attempting to gain weight. Her doctor reminded her that inpatient and residential care were both available to her, but she also told Alyssa that, as someone with a long history of anorexia and a years-long history of “failed” treatment, she could enter palliative care or hospice care, both of which are usually associated with patients diagnosed with terminal physical diseases.

Because Alyssa lived in Colorado, a state where medical aid in dying is legal, she would also be eligible for MAID drugs, a lethal combination that varies by state. To qualify, her doctor had to believe that without treatment and left to eat however she chose, she was likely to die of anorexia complications within six months. Alyssa thought through her options, and then wrote to her doctor, saying she wanted to enter hospice care and “obtain access to the medications that would support my legal right to die should I wind up choosing this path.” Alyssa’s competency to make this decision was assessed by a local psychiatrist, who evaluated her and deemed her decision-making abilities intact. The first palliative-care doctor she saw did not feel ethically comfortable prescribing the drugs for psychological illness, so the eating disorder specialist prescribed them instead, once Alyssa had been in hospice for six weeks. She never took them, instead becoming “unresponsive in the natural course of her malnutrition,” and died in hospice in the presence of her family.

I read about Alyssa’s life in a Journal of Eating Disorders article written by Gaudiani, who prescribed Alyssa’s MAID medications; Dr. Joel Yager, the former president of the Academy of Eating Disorders; and Alyssa herself, listed as a posthumous author. The piece, published in 2022, tells Alyssa’s story alongside two other cases of patients who entered end-of-life care for eating disorders, one of whom took end-of-life medication and another who died, like Alyssa, of malnutrition in hospice care.

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When I first read the article, I cried, and I couldn’t quite believe this was what eating disorder care had come to, and then I was surprised I hadn’t expected it. Anorexics in their 30s sent to hospice to die after years of mistreatment and misunderstanding by insurance companies and treatment providers; the health-care system reframing its utter failure to treat this disease by simply deeming a treatable condition terminal; a girl sent to her deathbed by a doctor. I found myself reading the article over and over again, trying to imagine Alyssa’s face and invent her voice, wanting to call the insurance company that kept her in purgatory for seven months — time that could have been spent saving her life — and tell them they were murderers, and then call the treatment center that told her she was too underweight and curse them out.

I knew who the clear villains were, but I didn’t know how to feel about the doctor who informed her of the hospice option, who prescribed the MAID medication. At first, I wanted to hate her as much as I hated the insurance companies and the treatment centers, but I also understood what she and Alyssa understood: that the treatment Alyssa was likely to receive would have probably extended her life only briefly, caused her great emotional pain and perhaps even exacerbated her disorder. I don’t know that Alyssa couldn’t have been saved, but I am not confident she would have been.

When Alyssa first met Gaudiani, she told her, “I really want a life, to use my master’s in social work degree to help others heal, to find a partner, and to experience pleasure, laughter, joy, and freedom, including from my own brain.” Less than a year later, Alyssa felt that her anorexia was too far gone for her to ever experience those things. In a portion of the article that Alyssa wrote, she states that she would “not have qualified for Hospice care unless my illness was terminal (i.e., not reversible for me in light of physical, mental, emotional damage to my body).” Hospice spared Alyssa the agonizingly slow and physically painful death many anorexics experience, as well as the prospect of suicide, which almost 1 in 4 anorexics attempt, and instead offered her what she said was “a sense of ease and peace of mind in my final stage of life.”

She included lists of “personal considerations” and “challenges faced” as she made this decision. The final item under challenges was “gross misunderstanding about anorexia nervosa in general.” Whether Alyssa was referencing a culture that teaches young people to prize thinness at any cost, the stigmatizing narratives that conceive of anorexia as a willful and individual disease, or the medical establishment that repeatedly conveyed to her that she was sick in the wrong way, too sick to save, and then helped her die of her disease, albeit comfortably, we will never know — but I wonder whether she was writing about all of it.

Alyssa and her co-authors close the article by outlining a potential clinical definition for “terminal anorexia nervosa.” They lay out “proposed clinical characteristics”: the patient must be over the age of 30; have a diagnosis of anorexia nervosa; have received “high-quality, multidisciplinary eating disorder care” (the definition of “care” is left very broad); have proved their “decision-making capacity” and expressed that they “understand further treatment to be futile . . . and accept that death will be the natural outcome.” I feel sheer, simple terror reading about the diagnostic stepladder envisioned in that article. Eating disorders are notoriously competitive diseases, and the existing diagnostic hierarchy inspires shame and makes people sicker as is. If terminal anorexia nervosa is made an official diagnosis, I am as terrified as I am confident that even more people than already do might die of their eating disorders.

The article defining terminal anorexia sparked a feverish debate among eating disorder specialists. In the article “Terminal Anorexia Nervosa Is a Dangerous Term: It Cannot, and Should Not, Be Defined,” Dr. Angela Guarda, director of the Eating Disorders Program at Johns Hopkins, and her co-authors point out that most people who fit the chronic anorexia criteria “will not die within six months” if left to their own devices and emphasize that “there are no clear staging criteria … comparable to those used for cancer to help define terminal cases.” Beyond this, they emphasize that “malnutrition exacerbates depressive and obsessional symptoms, promotes eating disordered cognitions and impairs decision-making,” rendering it extraordinarily difficult for a severely malnourished patient’s desire to die to be taken at face value.

Alyssa wrote that she wanted to share her decision-making process to “help other patients and physicians as they consider and weigh the option of utilizing” end-of-life drugs, the prescription of which she felt was “a tremendous act of love” in her case. I understand where Alyssa was coming from, and reading her doctors’ words, I believe they were trying to lessen her pain with the tools available to them, which were blunt instruments and weapons, when what she needed was something we haven’t yet found.

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But it all feels to me like a capitulation to the failing system, an admission that literal death is less painful than receiving treatment as it currently exists. If that sounds like a logical leap, consider the fact that there is no other psychiatric illness for which an official terminal diagnosis has been proposed. There is also no equally lethal epidemic that receives so little media coverage. Opioid use disorder, which is the only mental illness with a higher mortality rate than anorexia, is covered on the front pages of major newspapers regularly and has not been given a graduated diagnostic scale that marks some sufferers as doomed. Placing a terminal label on a psychiatric disease for the first time could easily mark the beginning of a descent down a terrifying, slippery slope — wherein treatable mental health problems become grounds for a person’s life to be cut short.

Alyssa co-wrote that article because she wanted to help people like her. Her life might not fit the dominant narrative of eating disorder recovery, because that narrative is as unnaturally slim as the bodies we’ve been taught to want. So many of us have whittled our own narratives into the waifs we wanted to be. But how can slimming down our stories be the way we learn to live in these bodies? I want to let the dead tell their stories without putting words in their hungry mouths. I read the words of a girl writing online, who worries about the “sweet, tube-fed souls” she met in treatment and fears they are still stuck in hospitals or have ended up underground. I read the phrase “I wonder if she is alive today” on message boards over and over again, girls grasping at each other through the internet, girls hoping the ones they left behind aren’t ghosts. But if we let their stories widen and zag, we can learn who they were. Perhaps we can save more of those who are still here, struggling. Listen closely, and you can hear them now.

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