My assistant, Simone, calls through to tell me that Kirsten has arrived. When she enters my office—twenty-three years after our first meeting—my immediate impression is that she has not changed at all. This is because one’s initial response to Kirsten is shock at how painfully underweight she is.
When I move beyond this, I realize that of course she has aged, as have I. Not wanting my reaction to her appearance to be visible, I move forward to shake her hand.
“Kirsten. It’s good to see you. It’s been a long time. I think the last time we met, I was still a brunette.”
For most of her adult life, Kirsten Halpin has been the thinnest person she—or anyone who knows her—knows. At five foot six, she has weighed between sixty-five and a hundred pounds for the last twenty-five years. Now forty-seven, she has had anorexia nervosa far longer than she hasn’t, and it has affected her physical health ruinously. She has had extensive dental problems and has the bones of an eighty-year-old woman. Because of her emaciation, she has not been able to have children, and she recently discovered that she has early signs of kidney failure. A fiercely intelligent and capable woman, she has not had a paid job since her midtwenties.
Even having known many women with anorexia at various states of emaciation, I find that the sight of Kirsten’s skeletal frame cuts through my defences. I am confronted visibly by my failure to help her, and I feel, in the moment, useless.
“How have you been since I saw you last?” I ask her as she sits down.
Anorexia nervosa has been well described for more than 150 years. Primarily a disorder of girls and women, typically with onset between ages fourteen and eighteen, it is one of the few psychiatric disorders that has multiple physical manifestations—including striking thinness—that can cause numerous health problems and premature death. The profound weight loss that occurs comes from severe dietary restriction, sometimes punctuated by episodes of binge eating and then frantic efforts to purge the ingested calories. For someone with this disorder, the body becomes a metaphor for self-appraisal, self-definition, and control taken to an extreme that ultimately renders the person a slave to her own weight.
Extreme fasting, ostensibly for specific religious purposes, was widely documented in ancient Greek and Egyptian cultures, as well as in early Eastern religions. In the Middle Ages, self-proclaimed virgins starved themselves, following the example of St. Catherine of Siena, who died in 1380 from self-imposed malnutrition at the age of thirty-two. The implication inherent in these extreme behaviours was that some supernatural force permitted the young women’s extraordinary state.
Not until the end of the seventeenth century did doctors entertain the possibility that there was a psychological underlay for self-starvation. In 1694, Richard Morton described two patients who, in his view, suffered from a “nervous consumption” caused by “sadness and anxious cares.” More than 150 years later, a teenager named Sarah Jacobs became one of the most famous “fasting girls”—young women in Britain and the United States who rose to fame through fasting. Jacobs, who stopped eating as she entered puberty, became a tourist attraction. Jacobs’s case was likely known to William Withey Gull, the eminent British physician who coined the term anorexia nervosa.
The twentieth century saw an explosion of medical interest in eating disorders. Ancel Keys, a physiology professor and consultant to the US War Department, cast light on the medical complications that such patients had in common with starvation victims: endocrine abnormalities such as low basal metabolic rates; decreases in reproductive hormones; loss of protein, leading to fluid buildup—called edema—in patients’ limbs; electrolyte imbalances (particularly in the context of vomiting) and their potential for cardiac injuries; and the risk of life-threatening medical complications if patients were provided too quickly with normal amounts of food.
A slow process of improved nutrition and weight restoration, therefore, came to be recognized as an essential medical and psychological treatment for these patients. The late twentieth century also marked the emergence of “new” eating disorders such as bulimia nervosa, which entails eating thousands of calories of food in an uncontrolled and rapid manner at one sitting, then deliberately attempting to rid the body of the food through vomiting, laxatives, extreme exercise, and other forms of violent purging.
When considering the history of anorexia, I lean toward the explanation most frequently endorsed by physicians: that its core symptoms of voluntary self-starvation and bodily self-disgust in the face of eating and weight gain in obsessional, perfectionistic, and psychologically vulnerable patients are influenced by cultural context. Previously, women with eating disorders did not refer to a desire to be thin in aesthetic terms but rather explained their starvation as related to religious devoutness or medical symptoms; today, most sufferers refer to an extremely thin appearance as an aspiration.
Kirsten tells me about her activities, her husband, their travels together. She mentions proudly that she has maintained sobriety for fifteen years, following a decade-long struggle with alcoholism. She now acts as a mentor and sponsor to other alcoholics in recovery.
“It still amazes me that I was able to stop drinking but have never been able to get over my eating disorder. Maybe I am one of those people who can do things only in an all-or-nothing way? The abstinence model makes sense for alcoholics, but it doesn’t really work for anorexia nervosa. I can’t abstain from food.”
I tell Kirsten, “I remember our talking years ago about how this illness perpetuates itself, how people get locked into an endless cycle of food restriction, bingeing, and purging. I could see you understood the cycle but couldn’t break out. I wish I could have helped you more.”
Kirsten pauses, fiddling with her wedding ring, which is heavy on her bony finger. “I hope you won’t take this the wrong way, but I wish you had been more aggressive. Pushed me into treatment. I know this illness now, and I know that if you can get it early, you have a chance of escaping its clutches. Why didn’t you or my parents—anybody—step in more forcefully?”
It’s a good question. Why didn’t I step in? I realize I don’t have an answer to give her. I tried on a number of occasions to persuade her to enter more intensive treatment, and at times, when she dropped weight like sweat, I struggled with whether I should hospitalize her without her permission to prevent imminent death.
Striking a balance between winning a patient’s trust—a particular challenge with anorexia nervosa—and taking charge in a way that might undermine her sense of autonomy is the high-wire act of psychiatry. Over time, would Kirsten have come around to seeing the value of the psychiatrist’s temporarily taking control?
More than any other psychiatric illnesses, except perhaps substance abuse, eating disorders raise questions of free will and involuntary treatment. Unlike those whose perception of reality and normative behavior has been eroded by psychosis, many patients with anorexia can seem more “like you and me.” Despite the severity of her illness, Kirsten was working as a lawyer when I met her; she was as driven to be productive as she was to be at a perilously low body weight.
And yet, is not the belief that one is fat at 50 percent of one’s healthy body weight as much a delusion as the patient with schizophrenia’s belief that she has been implanted with monitoring devices by the CIA? Most of us agree that if the patient with schizophrenia becomes convinced that she needs to cut open her skull to remove the implant, the health-care system would be justified in restricting her ability to harm herself irrevocably, even if that meant temporary involuntary treatment and, as a last resort, physical and chemical restraint. For complex reasons, the notion that a patient with anorexia nervosa whose disease has inflicted irrevocable physiological damage should be forced to accept treatment is far more controversial.
Part of the discomfort with involuntary treatment arises from the fact that society as a whole tends to deny or not even to realize how lethal this disorder can be. Anorexia nervosa has one of the highest mortality rates in psychiatry. Even when it does not kill its victim, anorexia shortens lifespans by close to twenty years. One in five of the patients with anorexia who die prematurely commits suicide, while the majority suffer fatal physical complications. During the eight years I spent in clinical and research work in this field, a number of women in our eating disorders program died of medical complications of their illnesses, including electrolyte imbalances and cardiac rhythm disturbances. Some clinicians leave the field because of the high risk that the illness poses to patients, and those who stay acquire a certain resilience in the face of repeated patient deaths.
Food remains the drug of choice in reversing the danger of anorexia. The only relative bright light derives from studies demonstrating that children and adolescents with anorexia tend to do better, particularly with family therapy, which supports the theory that intervention may lead to better outcomes if the disease is caught early and treated aggressively. It also explains Kirsten’s regret.
“Do you think it would have made a difference, Kirsten?” I ask her. “I remember your telling me that it helped if someone else told you that you had to eat. During one of your worst periods, you could allow yourself to eat only if your husband ordered food for you in a restaurant.”
She nods. “That was a crazy time. The food rules were all wrapped up with my obsessive-compulsive disorder. Do you remember when I couldn’t leave my house without vacuuming the carpet in the hall all the way to the door?”
Kirsten now tells me about the positive things in her life, as if to reassure me that my failure has been less damaging than I think. I suspect she has sensed my unease. I remember her gift for empathy, her double-edged ability to put another’s needs above her own.
“It’s not so bad these days, my life. I have come to terms with what’s happened to me. I have my husband, my house, my friends. And I love my nephews and nieces; they have given me great joy over the years.”
There is a pause during which we both confront the obvious. Kirsten breaks it. She has reached a stage in her life when she has decided there is no point in pretending.
“I think I would have liked children of my own. But that wasn’t in the cards for me. Maybe it would have helped me put my eating disorder aside. I’ll never know.”
We share a short silence. Perhaps we are both imagining the life that might have been.
“David, I want to get your opinion of Ann Kerr.” She has mentioned a therapist I know well and admire. “Apparently, Ann has developed a practice focusing on women who have had anorexia for a really long time. I’m thinking of going to see her. What do you think?”
I am delighted to hear that Kirsten has not given up on feeling better, although I am concerned about her ability to make meaningful gains after so many years of illness. Given Kirsten’s self-awareness, I know she is, too. I admire her tenacity. But meeting her again and encountering the reality of her struggle with her disorder is especially difficult today: the recent suicide of one of my long-term patients has made me feel unusually vulnerable professionally. It shakes my ability to compartmentalize past mistakes and regrets, and challenges the denial necessary for my day-to-day work treating and giving hope to my patients.
Still, I have learned, painfully, that authenticity requires us to look back at those memories in order to learn from them. I know that Kirsten’s words to me today—“I wish you had done more”—will haunt me.
This appeared in the May 2016 issue under the headline “Thinner.”
From How Can I Help?: A Week in My Life as a Psychiatrist; by David Goldbloom, MD and Pier Bryden, MD; copyright 2016 by David Goldbloom, MD and Pier Bryden, MD; reprinted by permission of Simon & Schuster Canada, a division of Simon & Schuster, Inc.