By Carlin Flora, published on July 1, 2008 - last reviewed on November 20, 2015
Imagine the difficulty in treating a dangerous disease that can facilitate the onset of another deadly disease, one that makes the first one much worse. That is the horror of "diabulimia." Diabulimia is not an official diagnosis or a medically recognized term; it refers to those with diabetes who purposefully skip or reduce their insulin doses in order to lose weight, to the point where their behavior constitutes a diagnosable eating disorder and leaves their diabetes condition woefully mistreated.
Just as disordered eating habits fall along a scale from weight preoccupation to bulimia or anorexia, restricting insulin for weight loss purposes can range from an infrequent practice to an uncontrollable phenomenon that puts the patient at risk of dying, says Ann E. Goebel-Fabbri, a psychologist at Joslin Diabetes Center in Boston. About 30 percent of diabetic women use insulin restriction for weight loss purposes at some point in their lives, she says, though that of course does not mean they have a full-on eating disorder. What's startling is that Type 1 diabetics are two and a half times more likely to develop an eating disorder than other women. Given that eating disorders are the deadliest of all psychiatric conditions, this tendency puts women who are already in a precarious health situation in an even more fragile state.
Type 1 diabetes is an autoimmune condition wherein cells that make insulin are attacked by the body's own immune system. Insulin is the hormone that allows the body to access energy from food, in the form of glucose traveling in the bloodstream. Without insulin, cells can't access the glucose and are left to starve, while the blood stream is saturated with the stuff, causing symptoms such as excessive urination, extreme thirst, low energy, and weight loss.
As the body turns to other tissues for energy sources, severe consequences unfold, including a high risk of falling into a coma. For those who consistently keep their blood-glucose levels too high by forgoing insulin, long-term damage to eyes, kidneys, nerves, and the circulatory system is likely.
Such dire consequences would seem to be a frightening deterrent to withholding insulin, but the reason women with diabetes are more at risk for developing an eating disorder could be in part because of the treatment they undergo, says Goebel-Fabbri. As patients, they are taught to be very aware of their calorie intake and their weight. "Somewhere this gets lost in that translation, and women who would be at risk for an eating disorder anyway develop a greater concern and a greater preoccupation with weight, along with rigid ideas about eating. It's a slippery slope."
Once a woman is in the grips of an eating disorder, the threat of, say, blindness or amputation is no match for their psychological need to stay thin and avoid insulin. "It's not that these patients are unaware of the risks," says Goebel-Fabbri. "They know they feel bad, they know the risks are severe, but their eating disorder takes control over their lives. It's no longer consciously driven." Though the thrill of an easy weight-loss plan may have drawn them in initially, they no longer reap any benefits from being slim.
The therapy practiced on these patients is similar to treatment for anorexia and bulimia, in that they are taught nutrition management and flexible thinking skills about eating and weight. But anyone treating a diabulimic must simultaneously help them stabilize their blood glucose levels and get used to administrating their daily shots. "It's a delicate balance between doing what's good for the patient and what's comfortable for them, because many are terrified on insulin," says Goebel-Fabbri. "We must help them to chip away at those fears, and develop a clearer understanding of what insulin does."
While there are no long-term data on treatment outcomes of women with diabulimia (nor are their statistics on how many men may be suffering from both conditions), it is a difficult problem to overcome. Then again, says Goebel-Fabbri, "the initial health benefit and the improvement that people feel once they start taking their insulin—more energy, an elevated mood—can be very motivating."
The phenomenon of diabulimia has been documented in the research literature since the late 1980s, but has only just recently been covered in the popular press. Goebel-Fabbri hopes this new awareness will help those with diabulimia to realize they are not alone, and that treatment is available. She also hopes that family members, friends, teachers, and coaches of potential sufferers will encourage them to get help.