‘Diabulimics’ shun insulin to get thin

By Jenna Bergen

updated 7:28 a.m. ET Nov. 14, 2007

God, she needed air. Erin Williams lay in bed, her lungs aching with each long, excruciating gasp, and still she couldn't get enough. Her heart was racing, pounding against her small chest. And she was so thirsty. She'd been up only an hour before to greedily gulp down water before falling back into bed and succumbing to a restless, uneasy sleep. Now she was awake again, her bladder unbearably swollen. Williams pulled herself from the bed, so dizzy she could hardly stand.

She reached in the dark for her purse, which held the drug she so desperately needed — insulin. She rummaged through her makeup and car keys, fumbling until her fingers encircled one of the cool glass vials. Merely looking at the bottle filled her with dread, knowing it held the medicine that had become so hated. She drew back the syringe, her shaky hands measuring out just enough to pull her back from the edge of a diabetic coma. Never a full dose, never enough to feel well...

Williams, now 24 and an account coordinator for an advertising agency in Palatine, Illinois, remembers that autumn night eight years ago as the worst of her life. "I was so scared to sleep in my room alone," she recalls. "I was afraid I was not going to wake up in the morning." Barely breathing, she curled up on the floor beside her parents' bed, too ashamed to wake them and tell them the secret she'd been carrying. A type 1 diabetic, she had been skipping insulin injections for months. Many of her diabetic peers were, too, and would struggle with the impulse well into adulthood, destroying their body and risking their health. All for a reason that, at the time, seemed more important than life itself: to be thin.

The dangers of diabetes
When a young woman develops type 1 diabetes, she will experience sudden and dramatic weight loss; it's one of the telltale signs that her body is no longer producing insulin and has lost its ability to use food for energy. Normally, most of what you eat is broken down into glucose, the sugar that fuels your cells. Insulin, meanwhile, is the hormone that unlocks cells and allows them to take glucose in and either burn it or store it as fat. But in as many as 1.4 million Americans diagnosed with the autoimmune disease known as type 1 diabetes, this process has gone haywire. Their pancreas has lost its ability to make insulin — and without it, the body begins to starve and unused glucose floats uncontrolled into the bloodstream, raising blood sugar levels.

Left unregulated, high blood sugar can damage the blood vessels that support organs all over the body, perhaps by binding to proteins and gumming up the works. The result can be blindness, kidney failure, heart disease and nerve damage. The other extreme is as dangerous: Too little glucose can sap the brain of energy, causing symptoms from light-headedness to coma and death. Insulin shots — though they can't completely replicate the intricacies of a working pancreas — allow those with type 1 diabetes to seek a balance between running too high and too low, as the body was meant to do naturally. (The more common form of the disease, type 2 diabetes, tends to strike later in life than type 1, and patients can often control it through diet, exercise and oral medication.)

When insulin saved the first human life in 1922, the world rejoiced — up until that point, a diagnosis of type 1 diabetes had been a death sentence. In the past 15 years, studies have proved just how effective insulin is at staving off complications, and doctors have honed treatment regimens using increasingly precise measurement of blood sugar and "designer" forms of insulin. Yet for many young women with type 1 diabetes — a significant chunk of whom are diagnosed just as they are growing into their curves and nearing a prime age for eating disorders — this lifesaving serum has become a hated substance. It's not just that patients gain back the weight they had lost before diagnosis. They sometimes gain more, as insulin injections alone can pack on extra pounds.

Insulin underdosing
And because diabetics have the unique power to control the amount of insulin they give themselves, they have a tempting — and dangerously easy — way to shed these unwanted pounds. One in three type 1 diabetics reported skipping or underdosing their insulin to lose weight, according to a study by researchers at the University of Toronto. "A lot of women avoid intensive insulin management, even though it has tremendous health benefits," says Ann Goebel-Fabbri, Ph.D., a psychologist at Joslin Diabetes Center and Behavioral and Mental Health Unit in Boston. "This behavior is like playing Russian roulette with your health. It's almost like they're turning back the clock to a point in history when we didn't know that the consequences of diabetes were preventable."

The problem is widespread enough that physicians now see insulin underdosing as a form of purging, making it a close cousin of the eating disorder bulimia. Some doctors even call it "diabulimia." Unlike disorders such as anorexia, in which a person severely restricts calories, a person omitting insulin can eat whatever she wants. Pizza, beer, ice cream — none of it can be processed by the body. Nor do diabulimics have to go through the pain of self-induced vomiting. All they have to do is skip shots and watch their weight spiral drastically down, calories purged from the body in a sugar-filled stream of urine.

Most people outside the diabetic community have never heard of diabulimia, and it's not in the DSM-IV, the text outlining recognized mental illnesses. But over the past few years, the term has found its way online, where women have picked it up, finally able to give a name to their disorder. Frustrated with a medical community that seems shockingly unaware, sufferers have filled message boards and blogs, searching for answers. "There's virtually no treatment programs that specialize in this," says Ovidio Bermudez, M.D., immediate past president of the National Eating Disorders Association in Seattle. "And yet the problem is growing. This can rob somebody of their eyes, their kidneys, their liver and even their life."

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