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Image: insulin syringes
Bill Diodato
One in three type 1 diabetics have reported skipping or underdosing their insulin to stay thin. The problem is so widespread that some doctors call it "diabulimia," a dangerous form of purging.
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updated 11/14/2007 7:28:59 AM ET 2007-11-14T12:28:59

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.

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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."

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.

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.

Copyright © 2012 CondéNet. All rights reserved.

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