By Rebecca J. Lester, author of Famished: Eating Disorders and Failed Care in America
In 2017, America awoke to news of a new epidemic that not only claimed individual victims, but also destroyed families, decimated communities, and threatened the very fabric of our society. Soon officially designated a national public health crisis, the Opioid Epidemic surged onto the national stage, gripping the American imagination and fueling fears about pharmaceutical company malfeasance, international drug rings, and rampant medical malpractice. Governmental and community responses alike were swift and massive, with millions of dollars directed toward new research agendas and treatment programs, and policy changes making their way through legislatures with lightning speed.
Watching these events unfold led me to wonder about how public health crises are made, why some issues seem to take hold and generate momentum, while others simply wither on the vine, or limp along lamely without much support. What makes a public health crisis, dare I say, “sexy”? Certainly, it has to do with which lives are deemed worthy of intervention and which are deemed expendable. But I think it is more than this. The unfurling of a public health crisis is also a morality play about threat and rescue, sin and innocence, victims and heroes. How we, as a society, collectively respond (or not) to a looming public health concern enacts a story we tell ourselves about who we believe ourselves to be. By defining which lives and conditions fall within the protective embrace of the “us,” we mark the limits within which suffering can be made legible. And by only tending to those whose suffering has been rendered legible, we can retell the story of a benevolent society in which redemptive care is forever within reach.
Except when it isn’t.
Compared to the approximately two million people in the US struggling with opioid addiction (1), at least thirty million people of all ages and genders suffer from an eating disorder (2). These conditions afflict more than twice as many people as Alzheimer’s and five times as many as schizophrenia (3). Because of the secretiveness and shame associated with eating disorders, the actual numbers are likely much higher. Every sixty-two minutes at least one person dies as a direct result from an eating disorder (4). And this does not account for the fact that most eating disorder deaths go misattributed to cardiac arrhythmias or various kinds of organ failure. The numbers are undoubtedly higher by degrees.
Despite these alarming numbers, fewer than one in ten people with an eating disorder will access any kind of mental health care and only 35% of those individuals will receive necessary specialized treatment (5). Even people who do access treatment face an uphill battle in terms of getting enough or the right kind of care. Individuals regularly are discharged below minimum weight recommendations, without necessary behavioral stabilization or support, or without adequate transition assistance back to the community (6). Many insurance plans—even after the implementation of the ACA—provide very circumscribed benefits for eating disorder treatment or exclude eating disorders from coverage altogether (7).
Why has opioid abuse drawn so much public support and material aid, while eating disorders have not? The short answer is that people who become addicted to opioids (especially prescription medications) more cleanly fit American understandings of deserving moral victimhood than those who develop eating disorders. Many of the new addicts, we are told, are everyday people (like you and me!) trying to manage pain who found themselves inadvertently dependent on powerful substances whose manufacturers stand to make billions off of their addictions. The villains and victims are obvious and the redemptive pathway is clear. People with eating disorders, by contrast, are widely believed to be mostly young, white, wealthy women who actively chose their afflictions in order to feel special or to get attention. Manipulative, self-centered, and intractable, they are notoriously “difficult” and “resistant” patients who don’t seem to want to get well. What kind of “victim” is this? And not only are people diagnosed with eating disorders rendered problematic victims: they are often read as active victimizers of others—family members, clinicians, the insurance system.
These (mis)readings of eating disorders are not an accident or a fluke—they are the result of centuries of gendered, raced, and classed assumptions about who gets sick and why, who is morally responsible for what kinds of suffering, what “health” looks like, and how recovery is to be achieved. Rewriting these scripts will require a full-scale re-envisioning of how we understand eating disorders and their treatment, as well as shining a bright light on the role for-profit healthcare plays in their perpetuation.
In Famished: Eating Disorders and Failed Care in America, I bring over twenty years of work in the eating disorders field—including ethnographic and clinical engagement in an American eating disorders clinic spanning seven years—to the questions of how we got here, to a point where eating disorders are both ubiquitous and invisible, and where the best hope for help is to be found within a system that operates with a logic of scarcity and ascetic morality that mirrors eating disorders themselves. Under these conditions, clinicians struggle to deliver good care in spite of the structures that govern them, rather than because of them. And clients reach toward a recovery that requires them to participate in their own erasure. As clinicians, clients, and families struggle to find hope within a system that is often overtly hostile to their plight, the faults and fractures of the American managed care system are laid bare.
- Center for Behavioral Health Statistics and Quality (CBHSQ). 2017 National Survey on Drug Use and Health: Detailed Tables. Rockville, MD: Substance Abuse and Mental Health Services Administration; 2018.
- Hudson, James I., Eva Hiripi, Harrison G. Pope Jr., and Ronald C. Kessler. 2007. “The Prevalence and Correlates of Eating Disorders in the National Comorbidity Survey Replication.” Biological Psychiatry 61, no. 3: 348–58.
- Eating Disorders Coalition. 2018. “Facts about Eating Disorders: What the Research Shows.” Accessed September 27. http://eatingdisorderscoalition.org.s208556.gridserver.com/couch/uploads/file/fact-sheet_2016.pdf.
- Noordenbos, Greta, Anna Oldenhave, Jennifer Muschter, & Nynke Terpstra. 2002. “Characteristics and Treatment of Patients with Chronic Eating Disorders.” Eating Disorders 10, no. 1: 15-29.
- Vandereycken, Walter. 2003. “The Place of Inpatient Care in the Treatment of Anorexia Nervosa: Questions to Be Answered.” International Journal of Eating Disorders 34, no. 4: 409–22.
- Horgan, Constance M., Dominic Hodgkin, Maureen T. Stewart, Amity Quinn, Elizabeth L. Merrick, Sharon Reif, Deborah W. Garnick, and Timothy B. Creedon. 2015. “Health Plans’ Early Response to Federal Parity Legislation for Mental Health and Addiction Services.” Psychiatric Services 67, no. 2: 162–68.