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.
Type I is not a consequence of an unhealthy lifestyle, but an autoimmune disorder where the body attacks its own cells, called islets, that live in the pancreas and produce insulin. With insulin production eliminated, the body cannot convert glucose to energy, so people with type I must inject themselves with insulin multiple times a day, every day, to enable this conversion and to prevent sugar from building up in their blood. Some people use an insulin pump, which provides a constant flow of insulin that they then supplement at mealtimes.
At 19, this struggle with body image and weight happened to Pugh and is what led her down the path of eating fewer carbs and injecting less.
“Diabulimia isn’t something someone decided they wanted to do for fun—this is how people are coping,” says Simon. “They feel they lost control over their body and are trying to regain it.”
The winding path to recovery
In her early 20s, Pugh had to quit her job because she didn’t have the energy for it. She even considered filing for disability.
She began working with a personal trainer who helped her introduce carbs back into her diet. But then, against her trainer’s wishes, she tried the low-carb, high-fat ketogenic diet that forces the body to burn fat for energy, a process that produces ketones.
Ten months later, she was again gaining weight and at a loss for what to do. Her doctor prescribed her a medication that helped her manage her diabetes and lose weight, and referred her to a dietitian—which is how Pugh became Simon’s patient.
“She kind of pushed me over my threshold in order to stop the mentality that carbs are bad,” Pugh says.
Pugh, now 29, is lucky. Diabulimia can cause long-term complications such as liver disease, retinopathy and nerve damage, and can lead to stroke, coma or death. Disturbingly, diabetics who restrict insulin are three times more likely to die than their peers.
Outpatient care can be effective, though some people may need 24-hour care, says Simon. In a residential care setting, patients are not allowed to inject their own insulin and must undergo regular blood sugar checks. They also meet with therapists to learn how to have a healthier relationship with food and body image. There are several residential facilities throughout the country, including one in Bellevue, Washington.
Shame, stigma—and hope
Pugh says she has never been embarrassed about having diabetes, but when she was younger she wouldn’t discuss it unless someone asked her directly. She remembers classmates finding out about her diagnosis and challenging it because she didn’t look sick enough to have a chronic disease.
“It’s an invisible illness. You can’t pick a type I diabetic out of a crowd,” she says.
Doctors and other care providers can unintentionally perpetuate patients’ feelings of being judged or misunderstood, says Simon.
Type I diabetes patients regularly get a test called hemoglobin A1c, which tells how well their blood glucose levels have been controlled over the past several months. If results aren’t optimal, some doctors might shake their head or express discontent without meaning to, but these reactions can be internalized by patients and make them feel they are somehow failing, says Simon.
Eating disorders are accompanied by stigma on many levels. Parents may be reluctant to admit their child is struggling, and there’s an idea that only rich white kids get eating disorders—which isn’t true, Simon says. Men who have an eating disorder may buy into the misconception that it’s embarrassing to have what is largely seen as a women’s problem and may not get the help they need.
Simon encourages her patients to focus on a mindful approach to food. Her goal is to help them learn how to manage their diabetes better while also becoming healthier and more flexible eaters.
Going to Simon and educating herself about healthy nutrition helped Pugh overcome her aversion to eating carbs. Yet, she still has moments where she falls back into her old mindset.
“There are days when certain things run through my mind, like wanting to measure out rice,” she says.
Still, she hopes to become a registered dietitian and a certified diabetes educator so she can help people with and without diabetes better understand the unique challenges it presents.
“You have to learn to make a negative situation either positive or something you can handle and find a solution to,” she says.