National Eating Disorders Awareness week highlights the movement toward inclusivity of all individuals and communities who are affected by eating disorders. Eating Disorders Awareness week is an opportunity to start the conversation around eating disorders, to learn, connect with others, share stories, and get support.

So what is an eating disorder anyway? First, eating disorders are NOT a lifestyle choice. They are complex mental illnesses with serious medical complications and can be life threatening. It is estimated that 20 million women and 10 million men in America will have an eating disorder at some point in their lives.

Eating disorders have the highest mortality rate of any mental illness. Eating disorders do not discriminate, as they affect people of all ages, race, ethnicity, body sizes and genders. We don’t know for sure what causes an eating disorder, but there seems to be biological, psychological, and social risk factors that combine to form the perfect storm for an eating disorder to develop. These include, but are not limited to the following:

Diabetes and Eating Disorders Diabetes is a chronic illness with treatment that involves reading food labels, counting carbohydrates, focusing on portion sizes, and maintaining a healthy body weight. Along with a diabetes diagnosis comes an increased risk of mental health issues like anxiety and depression, which may contribute to feeling worse about one’s body shape or size. This can be overwhelming. The psychological challenges of living with a chronic illness that requires an intense focus on food and weight can be a gateway to the development of an eating disorder.  In fact, research shows that women with type 1 diabetes are more than twice as likely to develop an eating disorder as those without diabetes. This includes anorexia nervosa, bulimia nervosa, or binge eating disorders.

Healthcare professionals in the field refer to co-occurring diabetes and eating disorders as ED-DMT1. Individuals with type 2 diabetes can also develop eating disorders with binge eating disorder the most common. Binge eating disorder may also be a risk factor for developing type 2 diabetes and vice versa.

Diabulimia

The most common eating disorder in those with type 1 diabetes is known as “diabulimia”. This term was created by the media and is used to describe intentional insulin omission for the purpose of weight control which is considered a “purging” behavior. It is estimated that one third of adolescent girls and young adult women engage in this type of symptom use. The term “diabulimia” is not an official diagnosis, but has been useful in raising awareness of a very dangerous type of eating disorder. (4)

Warning Signs of Diabulimia

Eating disorders are under-diagnosed and under-treated in people with diabetes. Detecting an eating disorder is not always easy and you can’t tell whether or not someone has an eating disorder based on their body size. The warning signs are often overlooked or mistaken for “non-compliance” in diabetes care. Individuals engaging in eating disorder behaviors may feel ashamed and therefore not disclose symptom use.

Knowing the warning signs is essential for early detection. (5)

These include:

  • Consistently elevated A1C (9.0% of higher)
  • Unexplained weight loss
  • Recurrent hospitalization for diabetes ketoacidosis (DKA)
  • Frequent bladder, yeast or UTI infections
  • Irregular or lack of menstruation
  • Avoiding diabetes related appointments
  • Anxiety about body image
  • Avoiding social situations with food
  • Preoccupation with food, weight, calories
  • Excessive or rigid exercise
  • Withdrawal from friends or family
  • Depression and/or anxiety

Dangers

Diabulimia is a dangerous illness. Insulin omission in type 1 diabetes results in high blood sugar levels that build up in the bloodstream. The body tries to compensate for this by spilling sugar out through the urine. This can result in dehydration and the breakdown of body fats and proteins for energy leading to a buildup of ketones (acids in the blood). These individuals have increased rates of diabetes complications such as blindness, kidney failure, and limb amputations. Diabetes related complications develop at younger ages in this population compared to individuals with diabetes who do not have an eating disorder.

Treatment for Diabulimia

Few healthcare providers specialize in both type 1 diabetes and eating disorders. Working with a psychiatrist, psychologist, and dietitian who specialize in eating disorders is essential while continuing to work with your diabetes doctor, nurse and diabetes educator. Health professionals should work together as a “treatment team,” communicating regularly with one another to provide collaborative care and realistic treatment goals. Treatment goals should be integrated to optimize eating disorder recovery and diabetes care to improve both physical and psychological well-being. 

A Health at Every Size (HAES) approach has been shown to be effective in both eating disorder recovery and improvement in diabetes outcomes. To learn more about using a HAES approach in diabetes check out this podcast.

Get Involved

Treatment for both diabetes and an eating disorder is complex. The first step is to start the conversation by identifying the warning signs and acknowledging concerns. If you’re an individual struggling with these symptoms, talk to a friend, family member, or healthcare professional.

You are not alone.

Your healthcare team can connect you with resources and referrals to eating disorder experts in your area. If you suspect a loved one is struggling let them know that you are concerned, that you are there for them, and provide a caring and non-judgmental space to talk.

If you or a loved one is struggling with disordered eating, learn more about the Renfrew Center in Philadelphia, or visit NEDA’s website for a quick screening tool: www.myneda.org/screening. To get involved in National Eating Disorder Awareness week and to learn more about eating disorders visit www.nationaleatingdisorders.org. Join the movement to accept and celebrate yourself and your body.

Trish Lieberman MS, RD, CDE, LDN is a Registered Dietitian and Certified Diabetes Educator specializing in both the treatment of eating disorders and in diabetes care for type 1 and type 2 diabetes. Trish is passionate about helping empower individuals to develop a healthy relationship with food, body, and self.