After Kelie Gardner was diagnosed with Type I diabetes at age 14, she learned how to measure her blood glucose levels by pricking her finger and testing the blood and how to give herself shots of insulin, the hormone her body lacks, which converts sugar into energy. But there was also another, less healthy behavior that Gardner soon mastered: skipping her insulin doses in an effort to lose weight. “I wanted to be skinny, pretty and popular,” she admits. “And I knew I could do that by not taking my insulin.”
It’s a realization a growing number of young women with Type I, or juvenile, diabetes are coming to, say experts, who have termed the dangerous practice of skipping insulin injections to lose weight “diabulimia.” When a diabetic patient doesn’t take her insulin, her body is unable to process glucose; as a result, “she ends up urinating out a lot of the calories,” explains Kelly Costello Allison, Ph.D., an assistant professor at the Center for Weight and Eating Disorders at the University of Pennsylvania Health System in Philadelphia.
Losing weight, however, isn’t the only side effect of diabulimia. Patients who take improper doses of insulin risk suffering everything from blindness to potentially fatal medical conditions such as kidney failure or heart disease. “For some people it’s a dream come true, because they can eat and eat and eat, and instead of the body storing those calories, they go to the bathroom and lose them,” says Dr. Peter Baginsky, a diabetologist in Santa Rosa, Calif. “But it’s really a nightmare. All the body functions, including breathing and heart functions, are threatened by this condition.”
Gardner wasn’t thinking about the effects on her health, however, when she first began practicing diabulimia. She had been diagnosed with Type 1 diabetes during her freshman year in high school, after losing a lot of weight—a typical symptom, which reflects the fact that the body isn’t producing enough insulin. “After I lost all the weight, I thought, ‘Wow, I really like being skinny,'” recalls the 5’4 1/2″ Gardner, who had gone from 145 lbs. to 102 lbs.
Once she started taking the insulin shots her body needed to be healthy, however, Gardner’s weight gradually went back to its normal level—much to her disappointment. It was then that she recalled a story her mother read to her from a book about teen diabetics. “It was about a girl who stopped taking insulin to fit into her prom dress—she lost 10 lbs. without even trying,” Gardner says.
That was all the motivation Gardner needed to start cutting back on her insulin. “I told myself, ‘I’m only going to do this until I get down to a certain weight,'” says Gardner, who grew up in Yakima, Wash. But even after reaching 105 lbs. and seeing her hair “falling out in clumps,” Gardner couldn’t stop. “It had become too easy and too much of a habit,” she explains.
As they watched their daughter suffer through several hospitalizations and shrink in size while also becoming lethargic and weak, Gardner’s parents grew concerned; Gardner, however, insisted she was fine. “She never really let us into her world,” says her mother, Alaine. “I thought it was the diabetes.”
It wasn’t until 2003, shortly after Gardner had moved to Walla Walla, Wash., for college, that the seriousness of her condition became clear. She developed diabetic neuropathy, a condition caused by low insulin levels, in which the wiring of the nerves becomes so damaged they produce burning sensations. “It felt like my whole body was on fire,” says Gardner, who moved back home within a few weeks.
Gardner continued to struggle to take her insulin properly, but when she was unhappy with the way she looked, she often reverted to skipping doses; she also started throwing up after meals on a daily basis. By late 2003, “I would be in bed at night praying, ‘God, please take this away,'” says Gardner, who finally broke down and “wrote Mom and Dad a letter telling them about it and taped it on their bathroom mirror.”
With her parents’ support, Gardner started seeing a counselor regularly for two years. But in 2005, she experienced a serious relapse: A three-day binge-and-purge cycle prompted by stress left Gardner hospitalized with diabetic ketoacidosis, a life-threatening condition in which ketones (an acetoacetic acid that results when the body breaks down fat to get energy) accumulate in the body. It was only then, Alaine recalls, that Gardner proclaimed, “I’m sick and tired of being sick and tired.”
After her hospital stay, Gardner checked herself into the Quest Eating Disorder Program in Santa Rosa, Calif., where she received intensive outpatient counseling for 12 weeks. Today Gardner, now 25 and a graduate of Santa Rosa Junior College, “still struggles” to take her insulin regularly, she says. While Gardner prefers to stay at a healthy 135 lbs. by swimming and hiking near her Paradise, Calif., home, “there are still things that trigger me to fall down,” she says. “But the most important thing is that I get back up.”