Betsy was a superstar in high school. She excelled at sports, was homecoming queen and enjoyed hanging out with friends. She was diagnosed with type 1 diabetes at age 11, and earned the nickname “Splenda” in high school because she was sweet, and didn’t let her diabetes dampen her spirit. Betsy was from a small town, and didn’t know anyone personally who had type 1 diabetes.
Once she went off to college, Betsy started to enjoy her newfound freedom and attended off-campus parties. One night, she wanted to wear a cute outfit, but her insulin pump seemed to bulge out of her shirt. Betsy realized that if she removed her insulin pump, her shirt would look “perfect.” So she removed it for the evening. When she weighed herself the next day, her weight was down two pounds. Betsy realized that if she didn’t wear her pump (and didn’t take her insulin), she could lose a few extra pounds. Although her glucose levels stayed elevated, she lost weight quickly without taking insulin. Betsy thought she discovered the key to getting super skinny. Being thin seemed more important than blood glucose management.
As is true with most young women with this disease, Betsy worried less about the possible long- term consequences of type 1 diabetes (such as eye, kidney or heart disease). Instead she became obsessed with the idea of quick weight loss. After all, she couldn’t get rid of her type 1 diabetes, but she could control her body weight if she didn’t take her insulin. Betsy was suffering from an eating disorder called “diabulimia”, a life-threatening condition in which the sufferer withholds insulin to lose weight. Insulin withholding is often accompanied by other eating disorder behaviors (such as binge eating.)
Having an eating disorder along with type 1 diabetes is challenging, and can be life-threatening. The issue stems from the fact that our bodies require insulin to get blood glucose from the blood into our cells so we can use it properly as fuel. In type 1 diabetes, the body no longer produces insulin, so glucose builds up in the bloodstream. If insulin is restricted, the kidneys attempt to do all they can to help excrete glucose through the urine, causing frequent urination in order to get rid of excess sugar. The body begins to rid itself of glucose, calories and fluids, and unwanted pounds drop off rapidly. If insulin is being restricted, and glucose isn’t being properly used for fuel, the body turns to fat for energy. This may lead to dangerous production of toxic ketones, which can cause vomiting and worsen the problem of dehydration.
It’s common for individuals suffering from diabulimia to binge on large amounts of sugary or carbohydrate rich foods. Many young women with type 1 diabetes have a poor body image, and are constantly reminded to monitor their diets, count carbohydrates and check their blood glucose levels. Constantly monitoring blood glucose levels and carbohydrate intake may create an obsessive relationship with food and trigger an eating disorder such as diabulimia.
According to research published in the British Medical Journal, women with type 1 diabetes are 2.4 times more likely to develop an eating disorder than their non-diabetic peers. Individuals who skip or restrict insulin to lose weight have higher blood glucose levels and are at greater risk for developing long-term microvascular and macrovascular complications such as heart disease, stroke, neuropathy, retinopathy, and nephropathy. Mortality risk is also increased compared to those who do not restrict insulin. Another common issue young women complain about due to the high blood sugars are chronic yeast infections, which are extremely unpleasant.
“Type one diabetics who struggle with eating disorders are fully aware of the long term risks and complications that arise with prolonged elevated blood sugars. This is not an issue of the patient being unaware of the consequences”, explains Executive Director Asha Brown of We Are Diabetes, “When you have an eating disorder you go to drastic, dangerous lengths in an attempt to be in control of a part of your life. Nothing else matters more than your eating disorder; it’s calling the shots. Lecturing and shaming a type one diabetic patient about the risks of their behaviors when they’re struggling with an eating disorder is only going to make them feel more shame and guilt. A different approach must be taken.”
Diabulimia is a very complex disorder and appropriate treatment requires a trusting relationship between the patient and his or her healthcare team. What makes this dual diagnosis of type 1 diabetes and eating disorder unique, is the shame and guilt involved on the part of the person suffering. While the majority of people who experience diabulimia are female, males may suffer from it as well. The health care team must be non-judgemental during the treatment process and should ask open ended questions along with motivational interviewing techniques during the assessment and treatment process.
As a CDE and RDN who has worked with many patients suffering with diabulimia, I never assume that my patients are taking their insulin at the beginning of the treatment process. Chances are if the patient has greatly reduced her daily insulin dose, she may have been feeling fatigued, thirsty and plain old lousy for a long time. I start our sessions by asking open-ended questions such as: “Can you tell me about your diabetes diagnosis?” and “Can you please tell me how you eat on a typical weekday?" Encouraging patients to achieve small successes such as morning blood glucose checks or eating a healthy breakfast is vitally important. If the person suffering from diabulimia has a long history of disordered eating, it’s helpful to discuss the basics of carbohydrate counting. I also suggest reassessing calculations of units of insulin per gram of carbohydrate intake. Assessment of the patients basic nutrition knowledge is very important to help set the stage for recovery from this debilitating eating disorder.
A nutritional care plan for diabulimia should be flexible and must effectively address the needs for type 1 diabetes, as well as an eating disorder. Goals should be to restore a normal weight, take insulin as needed to manage blood glucose levels and decrease negative behaviors such as binge eating, purging, laxative use and restricting foods. Once a person with diabulimia is in recovery, he or she can begin to enjoy a fulfilling and productive life.