Treating diabetes patients with eating disorders comes with unique, complex challenges, says Marcia Meier, a diabetes nurse educator at the Melrose Center in Minneapolis, one of only a few facilities in the country that specializes in diabulimia.
“With diabetes there is a focus on numbers: What is your blood sugar? … How many carbohydrates have you consumed?” she explains. But “with eating disorders, people need to learn to let go of the obsession with numbers. So there is a conflict in treatment approaches.”
Over time, diabulimia can have potentially devastating medical consequences, says Shanti Serdy, an endocrinologist at the Joslin Diabetes Center in Boston. “Unfortunately I have seen patients develop complications that normally would happen much later, if at all, such as loss of vision and kidney failure,” she says.
The condition can also quickly turn fatal: One effect of insulin deprivation is that the body can no longer use glucose for energy, and so burns fat as an alternative source. This results in the buildup of a toxic substance called ketones, which can rapidly lead to severe dehydration, coma, and sometimes death.
Over time, Serdy, who works in tandem with a psychologist to treat diabulimia patients, has learned the warning signs. “The first clue to me that patients are purposely restricting insulin is an extremely high A1c,” a test measuring average blood-sugar levels over the past few months, “despite that they have a clear understanding of diabetes self-management,” she said. A healthy A1c level is around 6.5; Serdy has seen diabulimia patients with levels as high as 17. Mood swings and exhaustion are also common, as is avoidance—often, patients will cancel appointments or “forget” to bring diabetes records to their doctors’ visits to avoid being caught.
Pastor managed to hide what she was doing from her parents, and even her doctor, for months. It was easy to do, as she had always insisted on giving herself injections and monitoring her sugar on her own. When her sugar was higher than normal, her health providers assumed she was simply rebelling against the strict diet that her disease demanded by sneaking a few treats.
After a couple of months, she was crashing, too tired some days to stand up or talk. She recalls lying on the couch, hearing her parents try to wake her and whispering they were afraid she was slipping into a coma. Finally, she told them what she had been doing, kicking off five long years of therapy and repeated hospitalization.
Often, Type 1 diabetics’ risk of developing an eating disorder has to do with the messages they receive about their disease early in life, says Dawn Taylor, a psychologist at the Melrose Center. After a child is diagnosed, families typically change how they eat and establish new rules around food—an important part of managing the disease, but also often a tricky line to walk.