‘Diabulimics’ shun insulin to get thin

Dealing with a diagnosis
Erin Williams was only 11 years old when her pancreas shut down and stopped making insulin. It seemed at first like a 24-hour bug: She became ill late at night, throwing up after attending a concert with her family. But the next day, she was still feeling sick. She sat at the kitchen table and stared blankly at the bowl of cornflakes in front of her, gagging from the smell of the cereal and milk, while her parents contemplated whether to take her to the pediatrician.

A simple blood test showed that Williams's blood sugar was nearly eight times the normal level. "Erin," the doctor told her brusquely, "you are going to have to take shots for the rest of your life." Then he sent the crying girl straight to the hospital, where she passed out from sheer exhaustion. "I was hysterical," she remembers. "I didn't understand why I got diabetes and nobody else in my family had it. I felt like I had done something to deserve it."

For the next week, beneath the sterile glare of the hospital's fluorescent lights, Williams and her family were given a crash course in type 1 diabetes. She learned to gauge how much sugar she was eating and practiced injections by piercing oranges and sponges before pressing the needle through her own fragile skin. "It was overwhelming to have all those training sessions crammed into one week after your life has just been changed forever," Williams says. She says her parents, terrified they would lose her with one false move, began obsessively watching her diet. In order to determine the amount of insulin that would best resemble the pancreas's natural response to food, the family counted every carb, weighed every piece of meat, measured every cup of cereal and monitored each sip of juice. The emphasis on food and weight in diabetes treatment is necessary, but as Goebel-Fabbri notes, it also "has the potential to mirror an eating disorder mind-set." No longer could Williams eat whenever she felt the urge. Her entire schedule rotated around food, her glucose meter and a syringe.

'These are your fat shots'
It wasn't long before her reflection began to change, too. Newly diagnosed diabetics have been starved and dehydrated by the body's malfunctioning; as they reintroduce the first, sweet dose of insulin, the body quickly takes on water weight. At the same time, the adrenal glands pump out aldosterone, a hormone that causes the body to store even more salt and water. Although this weight typically dissipates within a few weeks, it can be traumatic. Williams had checked in to the hospital wearing a favorite pair of white shorts with yellow daisies; when she was released one week later, they no longer fit. "It's hard to put on 10 or 15 pounds in a week. I thought it was never going to stop," she says. "When you're first diagnosed with diabetes, you're used to being underweight. Insulin becomes your enemy. You don't even want to have it anywhere near you. You feel like these are your fat shots."

Given the country's ever-more-skeletal beauty ideal, many young women already struggle to accept and love their body. The heightened attention to food and the sudden weight gain that occurs after starting insulin therapy can put diabetic adolescents at an even greater risk. "Some of them feel that they've lost a basic sense of control over how their body works or how they can live their life," says Patricia Colton, M.D., medical director of the Day Hospital for Eating Disorders at Toronto General Hospital and assistant professor of psychiatry at the University of Toronto. Feelings of anger, coupled with the shame and frustration that many patients feel each time they see a too-high result on their glucose meter, can lead to depression and isolation. "Some people, even years after they are diagnosed, are still really grieving that they have diabetes," Dr. Colton says. Like all eating disorders, diabulimia becomes a way to regain control. Sufferers may even give up treating the disease altogether — the ultimate form of denial.

Vulnerable to eating disorders
For the same reasons, a high proportion of diabetic women fall prey to anorexia, bulimia and laxative abuse, compounding the physical and psychological risks of insulin omission. The University of Toronto researchers found that type 1 diabetic girls are two to three times more likely to develop an eating disorder than their nondiabetic peers. Gwen Malnassy, a 22-year-old student and nanny for a special-needs child in San Diego, started treatment for type 1 diabetes at age 9 and began purging only one year later, feeling guilty when she ate forbidden sweets and pining for how thin she had been in the months leading up to her diagnosis. She swung between periods of bulimia and anorexia, when she subsisted solely on water and Diet Coke. Even so, Malnassy says she tried for years to keep up her shots and be a "good diabetic." But by age 17, she became depressed and began to skip her insulin, too.

The disorders fed each other: The less insulin she took, the hungrier she was and the more vulnerable to bingeing. "I would binge and purge over and over again until I would fall asleep, exhausted, at some early hour of the morning," she says. When she tried to get her diabetes treatment back on track, her weight inevitably went up; then she would begin to skip her insulin again and the cycle would continue. "I felt trapped," remembers Malnassy, who has been doing better since her most recent inpatient stay at an eating disorder clinic in the fall of 2005. "Only when I felt I could no longer breathe would I allow myself the poison lifesaver of insulin," she adds. "And even then, I felt like I had been defeated."

Of course, such behavior is incredibly risky. James D. Walker, M.D., a diabetes specialist at St. John's Hospital in Livingston, Scotland, spent more than a decade tracking 14 women with type 1 diabetes who also had eating disorders. The results were grim: After 12 years, five of the women had died, two were blind and three were on kidney dialysis or had received a kidney transplant. The youngest of the women who had died was only 25; the oldest 42. Most unsettling is that by the end of Dr. Walker's study, most of the survivors "no longer fulfilled the criteria for diagnosis" — they were back on full doses of insulin and eating better. But the damage to their body had already been done.

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