We spoke to author Ann Goebel-Fabbri about eating disorders in patients with type 1 diabetes—also known as "diabulimia"—the subject of her new book, Prevention and Recovery from Eating Disorders in Type 1 Diabetes: Injecting Hope.
“Diabulimia” is a term used by laypeople and the media to describe a type of eating disorder unique to type 1 diabetes. It is characterized by insulin restriction (omitting or under-dosing it) as a powerful and dangerous means of calorie purging. This is not the only type of eating disorder experienced by those with type 1 diabetes. However, eating disorders with insulin restriction have been the most studied at this time.
Type 1 diabetes is an autoimmune disease in which the immune system selectively attacks the cells in the pancreas that produce insulin. Food that we eat gets broken down into basic building blocks of sugar and circulates through the blood stream. Insulin is the hormone that allows us to move sugar from our blood into our cells for use as energy. Because their bodies no longer make insulin, people with type 1 diabetes require insulin from outside their bodies in order to live. When insulin is not taken properly, sugar builds up in the blood and the body attempts to get rid of it through urination. This means that the calories from food are excreted in urine. Regardless of this process, blood sugar remains quite high. This is extremely dangerous because it can result in a potentially fatal medical crisis or in the early onset of diabetes complications like eye, kidney, and nerve damage.
Women with type 1 diabetes have two and a half times the risk of developing an eating disorder than those without diabetes. It remains unclear why this is, but experts believe it has to do in part with aspects of diabetes management itself. The focus on food portions, weight, and exercise can mirror the kinds of rigid rules associated with other eating disorders. Also, prior to diagnosis, people lose weight rapidly. Once insulin is started, their bodies often quickly retain a lot of fluid that makes people regain weight even more rapidly. They report feeling swollen and fat. Although this fluid retention is temporary, many people take this experience to mean that insulin “makes them fat” when in fact this part of their body healing. Unfortunately, for people already acutely sensitive to their body size and shape, this initial weight gain can lead to a fear of insulin.
*Some of these warning signs are specific to eating disorders with insulin restriction.
**Please note that there is not one particular body size that should trigger concern. People can have what appears to be healthy body weight and still be experiencing medically significant eating disorder symptoms.
I had the unique opportunity to speak with 25 women in recovery. They were both generous with their time and their personal experiences - speaking of their deepest struggles, fears, and triumphs all with the goal of helping others by sharing their stories of illness and recovery in this book. Over the course of my career, when I asked my patients what they felt helped motivate them to recover, the majority said something like, “I just got sick of being sick.”
This book is my attempt to bring more details to that single sentence. It begins with a review of the scientific literature – what research has taught us about the problem of eating disorders in type 1 diabetes thus far and what we still do not understand. But the main focus is on the lessons learned from these women, who I consider the true experts.
Here are the 10 main things they wish they could tell others who are currently struggling with an eating disorder of this kind. They also had a lot to teach loved ones, mental health professionals, and diabetes clinicians:
1: Look for treaters with in-depth knowledge and a non-judging approach
2: Be willing to “shop around” for the right fit
3: Access diabetes-informed eating disorder treatment (if available)
4: Know the signs and symptoms of Diabetic Ketoacidosis (DKA)
5: Don’t allow the fluid retention to trigger a relapse
6: Determine how your loved ones can support you
7: Work on managing your perfectionism
8: Remember that everyone feels overwhelmed at times
9:You are worth more than your weight
10: Find your motivation and connect to who you really are
Recovery is hard. It takes intense emotional work and solid support. But in the end, it gives you back what the eating disorder robbed from you. It doesn’t happen in a perfectly straight line – there will be easier and harder days. However, no matter how hopeless it seems, we know that recovery can and does happen. You deserve to have hope that is grounded in the real life examples of the women who taught me about their own recovery process.
Ann Goebel-Fabbri worked for 16 years as a clinical psychologist and researcher in the Behavioral and Mental Health Unit at Joslin Diabetes Center. She is a former assistant professor in psychiatry at Harvard Medical School. During her time at Joslin, her work involved teaching, research, and treatment focused on disordered eating behaviors in patients with type 1 and type 2 diabetes. It covered the spectrum of eating problems from food and insulin restriction to binge eating and obesity. Dr. Goebel-Fabbri’s work is published in numerous research papers and academic book chapters, and she regularly speaks at professional conferences. She currently runs her own practice in which she treats individual patients and also consults with healthcare teams and organizations to help them in their work with diabetes patients with and without eating disorders. She teaches health professionals about psychosocial aspects of diabetes, especially eating disorders and behavioral weight management. Her clinical and research activities have been featured in the popular media, including BBC Radio, Good Morning America, National Public Radio, the Huffington Post, CNN, and the New York Times.
Prevention and Recovery from Eating Disorders in Type 1 Diabetes: Injecting Hope sheds light on an often overlooked and misunderstood issue: the problem of eating disorders in women with type 1 diabetes – referred to by lay people and the media as "diabulimia" and characterized by insulin…
Paperback – 2017-02-06