This story was originally posted on Jan. 20, 2012.
“Mirror, mirror on the wall…For my eighth grade self, the day this common household wall-hanging echoed back to me an image that more closely resembled a cylinder of Pillsbury crescent rolls about to burst out of their airtight packaging than a twelve-year-old girl desperate for a single morsel of affirmation, was the day it crossed over to the other side. The war between the mirror and me had begun.”
So begins Maryjeanne Hunt’s memoir of a life lived with both an eating disorder and type 1 diabetes. The book, released this January, is called “Eating to Lose: Healing from a Life of Diabulimia.”
Like many young women, Hunt started to obsess over her body. And like an increasing number of people in America, she also had diabetes—a disease that forced her to take stock of every morsel that entered her mouth, heightening her awareness of every calorie. She quickly developed an eating disorder referred to in the popular press as diabulimia.
This eating disorder affects approximately 30 percent of women at some point in the course of their diabetes. As with many eating disorders, “it’s a true distortion in their perception” of their bodies, said Ann Goebel-Fabbri, Ph.D., a clinical psychologist at Joslin. That misperception is coupled with the misconception that proper doses of insulin will lead to weight gain.
So instead, they deliberately restrict insulin in order to shed pounds fast—but with major medical risk and dangerous consequences. Without insulin, the body can’t turn glucose from the blood stream into energy. It needs a different source, so it finds its fuel in stored fat.
The fat breaks down at a rapid rate and releases byproducts, called ketones, into the body. As they build up, ketones become toxic and cause physical illness, including vomiting and dehydration. This is called diabetic ketoacidosis, a medical crisis that can be fatal.
In addition, blood sugar skyrockets—increasing the risk for diabetic complications earlier in life and with shorter duration of diabetes.
But when Hunt would intentionally send herself spiraling into ketoacidosis after a donut or pizza binge, she didn’t know what it was called, or what it could do to her. She just saw the pounds melting away.
“I honestly thought I invented it,” she said. It wasn’t until years later when she came across the term “diabulimia” in literature that she realized she was not alone in her struggle with this eating disorder.
Many women receive their type 1 diagnoses during the early stages of adolescence, when self-esteem is already starting to waver and when the risk for developing an eating disorder is high. When Hunt was diagnosed with diabetes in the 1970s, the guidelines stated patients must measure their food with extreme accuracy. They couldn’t eat, say, three handfuls of popcorn. It was exactly three cups.
“That level of precision can only set you up to fail,” said Hunt. “And that sense of failure, when that gets in your veins the way it did for me, you’re never going to be enough.”
Since then, the recommendations for the management of diabetes have changed, swapping out intensive measurements of “good” versus “bad” foods in favor of methods like carb counting. But still, “the treatment of diabetes involves a lot of attention to food,” said Dr. Goebel-Fabbri. “It’s part and parcel of how living with diabetes has to go.”
Because of this, the road to recovery can be difficult. In other eating disorders, patients are encouraged to decrease their focus on food. But with diabetes, that’s not possible. Dr. Goebel-Fabbri’s research, in conjunction with Katie Weinger, Ed.D., R.N., shows that helping patients to change their fears about insulin and weight may be helpful in treatment. However, no studies evaluating the effectiveness of treatment have been conducted so far.
“The first message is that it is possible to recover, and recovery doesn’t mean massive weight gain,” Dr. Goebel-Fabbri emphasized.
Hunt feels that true recovery can only start when the patient admits that they need help. If you think someone you know is affected by an eating disorder, she suggests starting with broad, open response questions. “How do you feel…about your body, about food,” she offered. “Without judgmental responses,” she added.
Hunt eventually stopped purging by means of insulin restriction. Instead, she turned into a fitness fanatic. “And that became healthy for a little while, until I abused that as well,” she said. She finally realized the damage she was doing to her body when she gave birth to her twins. She believes she truly healed while putting together “Eating to Lose.”
With this book, Hunt wanted to start a conversation about a too-little talked about condition, and “I couldn’t do that if I wasn’t one thousand percent honest with myself, because these people who would be reading it would absolutely have felt what I felt,” she said.
“For me, secrecy fueled the illness,” she said. “So to break open the secrecy can only help.”