‘Diabulimics’ shun insulin to get thin

Skipping doses
Williams felt awful as soon as she began cutting back her insulin at the start of her freshman year of high school. "I was nauseated and sick all the time," she says. But she was seeing drastic results on the scale: In one month, she lost 30 pounds. "It's so tempting," she says, like eating each meal knowing that there's "a magic little pill that could make it go away."

Within two years, she was taking as little as four units of insulin a week — her recommended dose was up to 50 units a day. The feeling became almost addictive, as extremely high blood sugar produces a calm, spaced-out sensation that Dr. Colton likens to a drug high. "It was almost like being on Valium," Williams says. When she did take insulin, the swing back to a normal blood sugar level left her anxious and nervous, suddenly full of energy she didn't know how to use. And she became terrified of the immediate weight gain she saw each time she went back on her shots. Just as when she was first diagnosed, she developed insulin-induced edema: fluid retention so extreme that she would wake up in the morning with her eyes swollen shut. Her limbs became so puffy that if she touched her calf, the pressure mark would remain for hours.

At her lowest point, Williams was sleeping 20 hours straight on weekends and weighed a mere 89 pounds. "My friends obviously knew that I was struggling with something," she says. "But they couldn't put their finger on it. It wasn't anorexia or bulimia, so what the hell was going on?" Although her parents suspected she was skipping doses, she denied it. She rigged her glucose meter by placing a drop of alcohol on the test strip, producing readings hundreds of points lower than her real blood sugar. Desperate to help, her parents began marking Williams's insulin bottles with a pen to see if the levels sank. Late at night, as she slept, they sometimes sneaked into her bedroom to make sure their daughter was still breathing.

By the time Williams curled up on her parents' floor that night in October 1999, she had fallen into a state called diabetic ketoacidosis (DKA), a life-threatening complication that can develop within 24 hours of omitting insulin. As Williams slept, a molecular war was taking place inside her body. Unable to use the sugars in her bloodstream, her cells began a desperate search for other sources of fuel in muscles and fat. The body released hormones that break down fat stores, releasing by-products called ketones. That made things even worse: The spike in ketones upset the body's pH levels and turned her blood acidic. In essence, Williams's body had become toxic to itself.

If Williams had not given herself a shot of insulin, sending a rush of relief to every cell in her body, she might have fallen into a coma or even died that night. "Many of the women omitting insulin are walking the fence by giving just enough insulin to prevent this cascade of events," says Christopher Marx, M.D., an endocrinologist at Scripps Clinic Torrey Pines in La Jolla, California. "But they can slip past the point of no return, where an ER or hospital care is the only thing that will save them."

Help hard to find
Unfortunately, when diabulimics are finally ready to seek help, it can be hard to find. Suzanne Schaffner, a 28-year-old marketing director from Escondido, California, has struggled with diabulimia since age 15 and has been hospitalized three times with DKA. And yet she says no doctor ever confronted her about what was triggering these episodes. After years of having to eat around a strict schedule, she had lost all touch with her hunger cues and began eating to quell her emotions. But she did not raise her insulin dose in accord with her overeating. "I'd give myself insulin for what I should have eaten," she explains. "If I had an extra piece of something, I'd just deny to myself that I ate it."

Schaffner felt that her physicians were judging her when they saw that her blood sugar levels were out of control. "It's a pull-yourself-up-by-the-bootstraps mentality," she says. "I think [doctors] dismiss the fact that our health depends on how our head is taking it all in." Endocrinologists should be more willing to refer patients with insulin-management problems to mental-health practitioners, says Deborah Mangham, M.D., assistant medical director of the Park Nicollet Eating Disorders Institute in St. Louis Park, Minnesota. "The mental-health part of diabetes can't be ignored," she says. "Patients feel shameful about omitting the insulin and about eating. It takes them so long to trust somebody and tell them what's really going on."

Conventional eating disorder centers are also ill-equipped to handle the unique needs of diabetics. A woman suffering from both diabetes and an eating disorder "can't be treated by one single practitioner," says Dr. Mangham, who helped develop one of the first programs in the country to specifically target these patients. Diabetic patients at Park Nicollet work with a collaborative team of doctors, nurses and therapists who understand both issues. Once blood sugar levels are under control, women are able to meet face-to-face with other patients like themselves. "They all feel they are the only people in the world with this. So it's nice that they've got people in the room that have exactly the same problem," Dr. Mangham says.

Doctors and nurses who work with diabetic girls have also hesitated to screen those at risk for diabulimia because they fear that, instead of preventing the disorder, they might plant a seed. Still, Dr. Colton says, "There are ways you can ask about these things without necessarily giving someone a tip on how to omit their insulin. Every time someone comes in, [doctors should ask] questions about how she feels about her weight." From the day doctors diagnose women with diabetes, Goebel-Fabbri says, they should encourage patients to seek out a treatment team that includes both a nutritionist and a personal trainer who will work with them to reach a healthy weight while also maintaining ideal blood sugar levels. "We need to emphasize that managing your weight doesn't require this kind of extreme and dangerous behavior," she says.

The temptation to be thin
Certainly, not talking about diabulimia has done little to prevent women from picking it up. Christie Plourde, a type 1 diabetic and registered nurse from Marquette, Michigan, says she first learned about the dangerous weight loss trick during her freshman year of college, from a friend she had met through diabetes summer camp. "Don't do your shot," her friend told her. "You'll get thinner, you'll drop off the weight and you'll look great." Now 28 and a single mom, Plourde tries to stay healthy for her 6-year-old daughter, Shaylyn. She keeps a Post-it note by her bed that reads "Remember to do your shot. Your daughter counts on it." Every once in a while, though, the temptation to "erase" a cookie or a piece of cake surfaces, and her friend's advice crosses her mind again. "Summer comes around, and there are weddings to go to," Plourde says plaintively. "Or you want to look good in a bathing suit."

Erin Williams has spent the past nine years struggling against her self-destructive habit. After her frightening bout with DKA, Williams's parents admitted her to an eating disorders program in Illinois. But without any other patients with whom she could relate, she felt misunderstood and alone. "I was shocked to listen to some of these girls who were anorexic or bulimic say to me, 'Wow, you're so lucky. I wish I could do that,' " she says. Since then, Williams has gone in and out of treatment, picking up bits and pieces of information from eating disorder clinics, psychologists, endocrinologists, nutritionists — left to sift through it alone, searching in vain for a program geared specifically toward her disorder. "I would have gotten in control so much faster than in all the years it's taken me to learn all this on my own," she says.

Williams looks and sounds too young to be listing all the complications diabulimia has cost her: kidney damage, liver damage, nerve damage. Her nerve-damaged hands and feet burn as if they're on fire, and her bones are so brittle that earlier this year she broke a foot in five places simply by walking on it. It's a warm, sunny day at Delavan Lake, Wisconsin, where she's vacationing with her family. She's wearing a cast on her foot, frustrated that she can't swim with everyone else. She sits on the water's edge, soaking up the sun.

These days, Williams says she tries to care for her body, striving to eat a balanced diet and stay active by swimming, skiing and jogging. Yet she still struggles with the temptation to skip her insulin. "Every single day, it's a battle," she says. "But I don't want to be 40 years old and be blind or on dialysis. I want to have kids and get married. What I was doing before was not a life at all." She exhales slowly and lowers her voice. "You're not invincible forever," she says softly.

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