We're smack in the middle of the National Eating Disorders Association's Awareness Week, and I'm wondering why I'm not familiar with the term diabulimia, a behavior highlighted in a study published today in the journal Diabetes Care. Though the Associated Press reported the trend last year, I suspect I'm not the only one who would've been hard pressed to explain that it's practiced by people—almost exclusively young women—with type 1 diabetes who can achieve significant, rapid weight loss by intentionally skipping doses of insulin. That hormone helps their bodies take up fuel from the bloodstream and tame erratic blood sugar. The price of thinness is especially high for this group: The Diabetes Care study found that women with type 1 diabetes who intentionally forgo their insulin medication have a threefold increased risk of premature death and higher rates of complications—including kidney dysfunction and foot problems—than those who don't.
I can't help but feel heartbreak for the young women who choose this destructive road, although choose is not exactly the right word. "Eating disorders are illnesses, not choices," explains Ovidio Bermudez, medical director of the Eating Disorders Program at Laureate Psychiatric Clinic and Hospital in Tulsa, Okla. "Diabulimia really needs to be looked at as a mental illness." So as much as I (or concerned family or friends) may want to plead with these young women to stop this extraordinarily unhealthful behavior and "please take your insulin properly," that would most likely be a fruitless effort. "This is not about 'cut it out,' " Bermudez explains. "It's about 'get help.' " The hallmark of mental illness is a loss of perspective, he says, and professional help from a psychologist, psychiatrist, or social worker who specializes in eating disorders is necessary. Cognitive behavioral therapy to teach rational, healthful behaviors can be a good place to start, says Bermudez.
Even members of a child's diabetes care team can misunderstand the behavior of diabulimia, says Ann E. Goebel-Fabbri, lead author of the Diabetes Care study. "Diabetes is a really high-stakes disease, and it's alarming to know that you have a life-saving, complications-sparing treatment, yet there are barriers to the patient [using it]." Also, doctors can sometimes hesitate to probe too deeply, she explains, for fear of "inadvertently teaching the behavior" to a patient they suspect might be skipping insulin. Goebel-Fabbri, a psychologist at Joslin Diabetes Center in Boston, would like to see screening added to regular checkups through a simple step: Patients can be asked to answer "true" or "false" to the statement, "I take less insulin than I should." Doctors could then refer patients who answer "true" to a mental health professional. There's nothing magic about the question, she says, but greater attention to this phenomenon is needed. And that will most likely take greater attention on everyone's part.
Perhaps more disheartening than my own lack of awareness is that parents may not be in the know either. "You see a lot of parents who are oblivious because their child has developed an enormously effective skill to be secretive about it," says William Polonsky, director of the Behavioral Diabetes Institute in San Diego. Yet many times, he explains, diabulimia is learned from peers—often at diabetes camps. So what are parents to do? "The No. 1 thing is to make sure you stay involved in your child's diabetes," says Polonsky. Know their A1C value, he says, which reflects blood sugar control over the past three months, and know how it got there. Other potential signs of disordered behavior, according to a 2005 analysis published in the Diabetes Educator by researchers at the Children's Hospital of Philadelphia, are rapid weight loss or gain, poor body image, frequent dieting, low self-esteem, binging, purging behavior (excessive exercise, laxative use, vomiting), and recurrent diabetic ketoacidosis (DKA is an emergency situation in which acids build up in the bloodstream as a result of extremely low insulin).
The critical message for young women: "Please understand that even if you start to withhold your insulin just a little bit, you may be awakening a monster as far as genetic vulnerability goes," says Bermudez. "You unravel a [sequence] of events in the brain, including lost perspective, from which you cannot pull back" without outside help. If you're concerned about being diabulimic, start by telling someone on your diabetes care team. Polonsky recommends ChildrenWithDiabetes.com for trusted information on all things related to the disease, plus a section to "Ask the Diabetes Team" for advice, including a search function for past queries. One harrowing post from a 13-year-old dramatically illustrates the fear—and medical danger—that characterize this intersection of eating disorder and diabetes. It's a wake-up call for all those touched by eating disorders that young men and women face quietly, secretly, and destructively each day.