Eating Disorders as Strategies for Existential Survival

https://www.ucpress.edu/blog/47851/strategies-for-existential-survival-an-excerpt-from-rebecca-j-lesters-famished/

I came dangerously close to dying from anorexia twice, once when I was eleven years old and again when I was eighteen. I was hospitalized both times for several months and spent years in outpatient therapy in recovery. Although these are the two episodes where clinicians gave me the official diagnosis of anorexia, in reality they were but two peaks (or valleys) in a much longer and protracted struggle. Between the ages of about eight and twenty-six, I was, at various times, an anorexic, a bulimic, a compulsive exerciser, and a binge eater. I can remember only one brief period during eighth grade when I was not miserably immersed in disordered eating of some form or another. During those bleak years, I learned that there are an infinite number of ways to treat one’s body as a detestable, yet constant, encumbrance. I frequently used diet pills, laxatives, stimulants, and anything else I could think of to wrangle, discipline, and punish my body into some sort of semblance of acceptability and to feel, even briefly, that I deserved to exist. It never quite worked.

Having an eating disorder is excruciatingly awful. It is a miserable, grinding, dismal existence. Every second of every day is saturated with fear, anxiety, and self-loathing, with no end in sight. Food and eating (and not eating) become the absolute focus of all your energy and attention. This is not a choice: you literally cannot think of or attend to anything else, at least not without an enormous expenditure of psychological, emotional, and cognitive energy, and even then, any such digression is fleeting and exhausting. Cognitively, you are calculating constantly: how many calories you have allotted for the day, how many you have already consumed, whether or not you counted right—calculating and recalculating and recalculating again, just in case. (To this day, I am a wiz at mental math because of the hours upon hours I spent during my anorexic years adding up, subtracting, substituting, and recalculating calories.) You think about what you just ate. You think about what you are going to eat next, how long you have to wait until then, and how you’re going to make it. You think about what you’re not eating that you wish you could eat, or you think about how glad you are that you’re not eating it because it would clearly turn you into an oozing mass of cellulite. You think about what a horrible person you are because you want to eat, even if you know there is absolutely no way you are going to let yourself do it. You think about how to keep yourself from feeling hungry, how to handle it when you inevitably are hungry, and how to keep other people from paying too much attention to what you’re doing with your food. You wonder what is wrong with you that you can’t just eat like everyone else and why you have to live in this misery just to try to look (if not to feel) normal.

Am I well now, all these years later? I think so. My body is healthy. It is strong and fit and active. I have two beautiful children, a wonderful partner, and a supportive community of colleagues and friends around me. But my mind has not forgotten how to torment me, at times sneaking up on me when I least expect it to let me know that it is still there, that capacity for self-loathing and self-destruction. It is critical to understand that eating disorders are not about food—not really. They are about a deep, abiding, toxic shame and self-negation that is so embedded that it may never fully be eradicated. It can be managed and channeled and ameliorated, but once you have had the experience of actively trying to obliterate yourself, something changes. There’s a part of you that knows what you’re capable of.

As I write this book, I have been free of eating disorder behaviors for over twenty years. I suppose in that sense I am a success story, although I would never in a million years recommend that someone go about recovery the way I did. There are far better ways to do it. And while I no longer engage in eating disorder behaviors, I still struggle daily with the deeper concerns these behaviors expressed: doubts about my worthiness and my right to exist equally with others, a deep sense of shame, and a strong desire to connect coupled with battlement-thick defenses of fear and anxiety. Now, I can name these concerns and address them productively without harming my body. I have no desire to binge, purge, or restrict. I love food and eating and eat pretty much what I want when I want. And I have maintained a healthy body weight through one PhD, two pregnancies, an MSW, therapeutic licensure, tenure, and a number of life crises. I have, I suppose, made it to the other side.

If this were a recovery memoir, I might claim that I answered Sheila’s question (“What’s the point of trying to get better?”) by telling her about the joys of living without an eating disorder and that the whole world is open to her if only she would let go of her illness and seize life. But I didn’t. Because I knew how she felt.

And the truth is that there are no guarantees that Sheila or anyone else will actually “get better”—not only because eating disorders are complex and tenacious conditions but also because, as I detail in Famished, we live in a society that withholds vital and necessary care that is central to recovery. Sheila was on her third round of treatment at the time of Allison’s funeral. She had been an inpatient for three months at a program in another state before coming to Cedar Grove the year prior, only to be kicked out for “non­compliance,” and she was now back, provisionally, as the staff assessed her willingness to change. The fact that Sheila, at age twenty-two, had taken out a large personal loan in her own name to pay for treatment, because her parents refused to help with the costs, seemed to indicate a pretty serious willingness to change in my book. But the other clinicians at Cedar Grove remained agnostic.

In any event, I didn’t give Sheila my own recovery story. And I didn’t give her the typical therapist line about how she’s worthy of recovery and owes it to herself to get better; I knew that would fall completely flat. I didn’t give her the standard medical spiel about how she would die just like Allison if she didn’t turn things around; part of her would have been relieved to die so that the suffering would be over with. I didn’t take the researcher angle and ask her what she thought the point of recovery was; she would find that (justifiably) obnoxious and dodging. Instead, I told her the truth, as best I knew it, from my own long and harrowing history with these illnesses: the point of trying to get better is that the only alternative is to lie down and die. And she had not fought this hard for this long only to give up now.

But this—survival—is not an obvious motivator for a person with an eating disorder. Not necessarily because she wants to die (though she may), but rather because eating disorders are themselves survival strategies. This may seem counterintuitive, given that they can—and frequently do—kill people. What I mean is that they are strategies for existential survival that include, but extend far beyond, the physical body. They are about wanting to be seen as a legitimate, dynamic subject, not as a vacuous, static object. They are about wanting one’s voice to be heard as a vital contribution, not dismissed as a cry for attention. They are about wanting a response, not just an answer. All too often, eating disorders become occasions for the opposite, for silencing and misrecognition, for erasure and denial.

To be absolutely clear: no one chooses to have an eating disorder. No one. It is miserable, excruciating, soul-sucking. Every second of every day is torture, and you just want to get through the hours until you can sink into sleep. And then it starts all over again the next morning. If a person is bingeing, purging, or restricting to the point of putting herself in medical danger, there is something seriously, seriously wrong in that person’s life such that destroying herself seems like the only viable option.

This reality is effectively erased in accounts of eating disorder clients as “resistant” to treatment or as “difficult” and “manipulative.” Eating disorders are, in many ways, particularly vexed and vexing conditions, at least as viewed from a mainstream biomedical perspective. When clients don’t get better after interventions that clinicians, researchers, and insurance companies think should work, they are identified as “problem patients” and labeled as chronically ill and beyond hope. The possibility that the interventions themselves—and the funding structures that inform them—may be a key source of the problem is rarely considered. As a result, very sick people in need of care frequently go without it and are simultaneously blamed for their “unwillingness” to get well.

The convergence of stigma, misunderstanding, and ignorance that structures the diagnosis and treatment of eating disorders in the American healthcare landscape is not an accident or a fluke—it is 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 reenvisioning 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.

Save 30% on Famished: Eating Disorders and Failed Care in America with promo code 17M6662.

Who Deserves Victimhood?

https://www.ucpress.edu/blog/47938/who-deserves-victimhood/

Who Deserves “Victimhood”?

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.

  1. 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.

  2. 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.

  3. https://www.nimh.nih.gov/health/statistics/index.shtml

  4.  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.

  5. 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.

  6. 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.

  7. 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.