It seemed harmless at first. Kyra Pugh would eat fewer carbs so she didn’t have to inject insulin as frequently. For someone who had already spent years dealing with the day-to-day burden of type I diabetes management, injecting less was alluring—as was the weight loss that accompanied it, since insulin promotes fat production.
Pugh’s new strategy to stay thin worked well—until it didn’t. After losing weight, she began gaining it. Her four-day-a-week workout routine became too difficult to maintain because she felt tired all the time.
Soon, just walking outside to get the mail became an arduous task that made her feel like she was going to faint.
Restricting insulin for weight loss purposes, either by taking fewer doses of insulin or taking less insulin overall, is called diabulimia. It is not an accurate or scientific term, but one that the media and some individuals adopted for lack of a single, widely-acknowledged way to refer to this type of eating disorder.
Like other eating disorders, diabulimia is more common among women, and studies have shown that up to 40 percent of young women with diabetes may at times purposefully omit insulin.
“When someone relies on insulin to keep their body functioning properly and they don’t take the insulin they need, it’s very dangerous,” says Judy Simon, R.D., who practices at the University of Washington Medical Center—Roosevelt and sees many patients who have both diabetes and an eating disorder.
Control as a double-edged sword
Unlike other eating disorders, diabulimia is not solely a physical or mental health issue but a complicated mix of the two, making it difficult to treat. Many diabetes care providers may not have the knowledge or resources to handle the mental health aspect of the condition, and many mental health providers aren't equipped to help patients manage diabetes.
Pugh was diagnosed with type I diabetes at age 11. She compares type I management to a 24/7, 365-day-a-year job that revolves around control. Control over what you eat, when you inject, how balanced your blood sugars are. Staying active is important, even from hour to hour, so she has to remind herself to get up and take breaks if she has been sitting for a while. Her mood and stress levels affect her blood sugar, and if she has a low blood sugar, or hypoglycemia, episode, she can feel ill, sweaty and drained of energy for an entire day.