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Overview
Product Details
| ISBN-13: | 9780520385740 |
|---|---|
| Publisher: | University of California Press |
| Publication date: | 11/02/2021 |
| Edition description: | First Edition |
| Pages: | 412 |
| Sales rank: | 745,382 |
| Product dimensions: | 6.00(w) x 9.00(h) x 1.20(d) |
About the Author
Read an Excerpt
CHAPTER 1
Introduction
"You cannot be serious!" Danya, a dietician, blurts out in the middle of the regular Wednesday morning treatment team meeting at Cedar Grove. Mirroring Danya's incredulity, the rest of us look around at one another, trying to process what we had just heard.
"I'm afraid I am serious," affirms Dr. Casey, the clinic's medical director, speaking up over the mutterings and exclamations of the staff. "I know it sounds crazy — I know! But we have looked at this from every angle. This really is the best option for Hope and for the family."
"Never have I been asked to put an anorexic on a diet to make her lose weight," Danya grumbles under her breath. Then, more loudly: "Hope is nowhere near her goal weight. It's going to undo all the progress she's made over the past two weeks. We've just finally gotten her up to where she needs to be calorie-wise with her add-ons! She has worked so hard. Now we're going to tell her, 'Guess what? Never mind! Time to start restricting again!'?"
"It's an anorexic's dream," quips Joan, the assistant medical director.
"I think she'll view it as punitive," observes Brenda, Hope's therapist. "Like, 'You're bad for gaining weight, and so now we're going to take food away.'?"
"That's a real danger," agreed Dr. Casey. "This could totally fuel the anorexia and make everything worse. But really, it's the only chance she's got."
Under what conditions would putting an anorexic client on a diet inside an eating disorders clinic become the "only chance she's got"?
HOPE
Hope was thirteen years old when she entered treatment at Cedar Grove, one of the youngest clients at the clinic. At the time of the treatment team meeting excerpted above, she had been at the clinic for just under two weeks.
Hope came to Cedar Grove directly from a local children's hospital, where she had spent a week on bed rest under close observation as her vitals stabilized. She had arrived at the hospital not only painfully underweight (at 72 percent of her ideal body weight) but also completely dehydrated — nurses struggled to find a good vein for placing an IV and eventually had to settle for one in her left hand. Utterly panicked by the amount of fluids that were being pumped into her body, Hope found ways to exercise when the nurses weren't looking and to dump fluid from the IV bag so it looked like it had gone into her body when in fact it had gone down the toilet. She refused to eat anything but vegetables in the hospital and would drink only juice (unsweetened), iced tea (unsweetened), and occasionally milk (skim). To stave off hunger pangs, she chewed gum (sugar-free) and sucked on the occasional Jolly Rancher. On threat of an NG tube being placed to force-feed her, Hope began to eat slightly more during meal times. Yet she also increased her exercise to compensate. Her weight continued to go down, and an NG tube was placed.
Hope still had the NG tube in when she arrived at Cedar Grove. Like most who have "the tube," Hope was highly ambivalent toward it. On the one hand, she hated it with a flaming passion. "Oh my god, this thing is awful!" she told me, explaining:
It hurts, and it moves around, and when I lie down I can feel it down the back of my throat. And the tube gets all crusty in your nose. It's totally disgusting. And then, when they put the liquid in, it's just gross having this stuff running down through your nose and into your stomach. I get stomachaches from the Boost [a liquid nutrition supplement] like a lot of people do. And my body is so slow to digest stuff that I'm still full and it's time for the next "feeding." And I hate how they call it a "feeding," like I'm a horse. Or a baby. I just want it out.
But even as much as she hated the tube, Hope (and others) did find some degree of relief in being able to bypass the actual act of eating. She continued, "I will say, it's nice to not have to deal with meal planning or sitting down to a plate full of food and thinking, 'How will I ever eat that?' It just gets shoved up my nose," she laughed, "and I don't really have to think about it. I think the whole time about all the calories, and that's horrible. But at least I don't have to physically put the food in my mouth and eat it."
Over time at the clinic, Hope began to eat more food by mouth, and by the time of the abovementioned treatment team meeting, she had been off the tube for four days and was doing well.
How, then, did Hope, a dangerously underweight adolescent who was just starting to allow herself to eat, come to be put on a diet inside an eating disorders clinic? How was this determined to be the best care the treatment team could provide? Eating disorder clinicians face untenable ethical positions like this on a daily basis. Making sense of apparently nonsensical scenarios like Hope's requires us to radically rethink what eating disorders are and to critically retool our approaches to treatment and recovery. And to do that, we need to understand the fundamentals.
WHAT EATING DISORDERS ARE (AND AREN'T)
Most people today know (or think they know) what eating disorders are. After all, references to eating disorders frequently pepper the covers of magazines ("Angelina Jolie — Anorexic!"), take center stage in movies, or appear in news reports or feature articles. But popular understandings of these illnesses — that they are about wanting to be beautiful, seeking attention, trying to fit in, and/or excelling at control — barely skirt the edges of what eating disorders truly are and what it's actually like to live with one.
Let me start with being clear about what eating disorders are not. Eating disorders are not diets that have gone "too far." Nor are they like cocaine or heroin addictions, where an addict can conceivably go cold turkey, detox for thirty days, and essentially be back to baseline as long as they avoid the drug. They are not juvenile temper tantrums, though they can be an expression of anger and rage. They are not "phases" someone goes through. They are not about superficial vanity or selfag-grandizement, though this is how they may look from the outside.
So, what is an eating disorder? This seems like a simple enough question, but it is deceptively so. In fact, what an eating disorder is depends on who is asking, and why.
The current Diagnostic and Statistical Manual of Mental Disorders (DSM) identifies four main categories of eating disorders: anorexia nervosa, bulimia nervosa, binge eating disorder, and other specified feeding and eating disorder.
Anorexia nervosa is characterized by acute self-starvation and the inability or unwillingness to maintain a body weight necessary for normal physiological functioning. Generally, this is accompanied by a deeply held conviction that one is overweight or fat, although instances of non-fat-phobic anorexia nervosa have been documented around the world and even in the United States. The DSM identifies a number of subtypes of anorexia nervosa, including restricting subtype (where the person sustains underweight through not eating), purging subtype (where the person restricts intake and also purges through the use of laxatives, vomiting, diuretics, or exercise), and binge-purge subtype (where periods of starvation are punctuated by instances of bingeing on large amounts of food and purging it).
What is not captured in these diagnostic criteria is the lived experience of having anorexia and the way it cripples everyday functioning. People with anorexia are terrified of food and other substances entering their body in the same way a person with claustrophobia is afraid of small spaces. Food and eating send them into utter panic. They starve themselves, even when they are severely underweight, and may also restrict the intake of liquids (including water) and even medications. Their fear and panic is so great that it outweighs any cautions about medical risks — the future possibility of damage or death pales in comparison to the perceived certainty of the immediate danger of eating. Anorexia is extremely harmful, affecting every organ system in the body. The brain starves and can lose mass. The heart can be permanently weakened. The liver and kidneys can shut down. Bones and muscles are depleted as the starving body cannibalizes itself for fuel — I have known nineteen-yearolds with osteoporosis, and one who fell and broke a hip. Some of this damage is reversible if caught early enough. Some of it is not. Anorexia is relatively rare (0.3 percent prevalence), but it is deadly. It kills one out of five sufferers, making it the most lethal of all mental illnesses.
People with bulimia manage their relationships with food differently. Rather than avoiding food completely, they alternate between bingeing and purging, consuming large amounts of food and then ridding themselves of it through vomiting, exercising, fasting, or using laxatives or diuretics. Indeed, the hallmark of bulimia is this alternation between consumption and undoing. Bulimia damages the entire digestive system and places significant burden on the other organs. One woman I knew had so much scar tissue in her throat and esophagus from purging that she could no longer swallow solid food. Bulimia is particularly dangerous for the heart, as it destabilizes the electrolytes in the body, which can cause cardiac arrest. People with bulimia may be of normal weight or even slightly above it, which makes it especially difficult for them to get insurance approval for treatment — to show medical necessity, the person must be at immediate risk for cardiac arrest or organ failure before they will be authorized for treatment. The really dangerous thing about bulimia is that someone can have perfectly normal labs and still be one purge away from a heart attack. And labs tell you nothing about a person's actual functionality. I knew a woman who was so consumed by her illness that she quit her job, dropped out of school, and did nothing but binge and purge ten to twelve times a day, yet she had normal lab results, so we could not get her authorized for inpatient treatment. Bulimia affects approximately 1 percent of the population, a similar rate as schizophrenia.
People with binge eating disorder binge on food but do not "undo" the binges through purging or other compensatory behaviors, as in bulimia. The distinctive feature of this condition is that the person wants to stop eating but can't. They feel a compulsion to eat, the same as a person with obsessive-compulsive disorder feels a compulsion to wash their hands or check the stove. As much as they may try to not overeat and as much as they may be committed to not bingeing, the compulsion to do so is so overwhelming that they are unable to prevent themselves from doing it. All the while, they feel self-loathing, shame, and disgust, yet they cannot stop. One woman I know described it as "living with a monster. Every day I would swear I wasn't going to do it again, but then it would happen and I couldn't stop it. I wanted to die." Binge eating disorder is the fastest growing eating disorder diagnosis, affecting approximately 3.5 percent of American women and 2 percent of American men. Other specified feeding or eating disorder (OSFED, previously referred to as eating disorder not otherwise specified, or EDNOS) is a category used to describe conditions that share symptoms across two or more of the other eating disorders or do not meet the duration or frequency requirements of a single disorder. For example, someone may restrict, as in anorexia, but then binge and purge once or twice a week. Or they may oscillate between periods of anorexic restriction, bulimic behavior, and bingeing for weeks or months at a time. People with orthorexia (obsessed with "healthy eating") currently also fit within the OSFED diagnosis, though recognition of orthorexia as a separate disorder is likely on the horizon. Although OSFED is something of an "other" category, this does not diminish its seriousness: more people are diagnosed with OSFED than either anorexia nervosa or bulimia nervosa, and it is just as damaging and deadly. People die from it. Nevertheless, many insurance companies — even those that do actually authorize treatment for eating disorders — often exclude OSFED on the false assumption that people with this condition do not have a "real" eating disorder.
Eating disorder specialists differ on whether they believe the various eating disorders are truly discrete phenomena with their own separate etiologies, trajectories, and patient profiles or whether, instead, eating disorders should be considered as expressions along a spectrum. I endorse the latter view. People often move across different eating disorders during their lifetime, suggesting a continuum rather than fully discrete disease entities. In addition, all of the eating disorders share important core features in terms of sufferers' lived experiences and the issues at stake in their illnesses and recoveries.
Although eating disorders are notable for behaviors surrounding food, body, and weight, the psychological, emotional, and cognitive dimensions of these illnesses run far deeper. On the whole, people with eating disorders tend to view their bodies with abject disgust and experience the weight and shape of their physical existence as intolerable and excruciating. This is generally coupled with a self-loathing that seeps into every crevice of self-knowledge and experience. As one recovering client diagnosed with anorexia described it to me, "I just miss seeing my bones. I miss that so much! Just seeing them through my skin. It made me feel safe to be so near death." People with eating disorders often persist in their behaviors long after they have destroyed relationships, endangered careers, or interrupted schooling. "I saw what it was doing to my life," another client told me. "But the eating disorder just felt so good that I didn't want to give it up. I couldn't. I didn't know who I would be without it." As we will see through the following chapters, eating disorders are what we might call existential disorders in that they structure and give meaning to a person's entire life and mode of being.
THE MAP IS NOT THE TERRITORY
The DSM definitions of eating disorders describe behaviors and cognitive features that clearly map onto experiences of real people. This is good and important. But do they really capture the phenomenon of what an eating disorder is? Do they capture the sleepless nights spent calculating calories, the depths of self-loathing that lead you to claw at your thighs, the panic that makes you break out in hives when you realize you mismeasured your cottage cheese at lunch? Do they capture the shame that interferes with intimacy for years after recovery, the inability to look at yourself in the mirror without cringing, the almost monumental effort required to allow yourself to take a break, to breathe?
Eating disorders are not simply a collection of behaviors, body weights, lab values, or cognitive distortions. Eating disorders are physically and emotionally devastating conditions where food and eating become the vectors and means by which deep existential concerns are made manifest and struggled out.
With this in mind, I will make a potentially provocative claim: Eating disorders do not exist within people; they emerge between people. They are not individual psychological (or even physical) illnesses; rather, they are continually conjured as "things" in the contexts of shifting interpersonal, structural, and material relationships within which they do very particular kinds of work. As deeply embodied conditions that entangle existential, phenomenological, and relational concerns, eating disorders manifest as sites where profound issues of intimacy, trust, obligation, and care are struggled out as the illnesses are lived, identified, and treated.
Specifically, one key argument of this book is that eating disorders in the contemporary United States emerge in and through the circulation of knowledge and practices among treatment providers, research agendas, and insurance companies. What counts as an eating disorder and what does not is produced through negotiations among powerful interests that, all too often, are motivated primarily by profit or prestige rather than by healing. The result is a clinical "reality" in which patients' "failure" to overcome the double binds within which that reality was created serves to further justify the structures that gave rise to it.
This is not to suggest that people are not suffering before, after, or outside of these structures — they most definitely are. But the synergistic aims of these three domains shape what eating disorders are thought to be, how they are diagnosed and treated, how they are experienced, and what happens to people who have them.
(Continues…)
Excerpted from "Famished"
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Copyright © 2019 Rebecca J. Lester.
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