Content note: Please note that this blog discusses one perspective and doesn’t capture all eating disorder representations.
Eating disorders in type 1 diabetes (T1DM) are rarely understood or recognized outside the T1DM patient and medical community. In fact, there is still a lack of awareness even inside of the world of T1DM. Despite this reality, girls and women with T1DM are close to 2.5 times more likely to develop eating disorders than those who do not have diabetes. This is a serious women’s health problem in diabetes, and it is associated with severe medical consequences.
Eating disorders in T1DM often involve a uniquely dangerous symptom – namely insulin restriction as a means of calorie purging. It is important to note that not all people with T1DM and eating disorders restrict insulin; however, the large majority of research in this area has focused on this particular eating disorder symptom. The media and lay public use the term “Diabulimia,” when referring to an eating disorder involving insulin restriction. When insulin doses are skipped or under-dosed, blood glucose levels rise, and the body attempts to excrete that glucose in the urine and thereby loses or purges calories.
Insulin restriction can lead to rapid and dramatic weight loss but also increases the risk of both acute and long-term T1DM complications and even an increased risk of death. We do not yet definitively know if there are identifiable factors that increase eating disorder risk at diabetes diagnosis or throughout the duration of T1DM. Most importantly, even less is understood about effective treatments for eating disorders in the context of T1DM.
Treatment guidelines have been created based on expert clinical experience, but as of yet no large-scale research has examined best practices and treatment effectiveness. Learning from women with T1DM who have recovered from an eating disorder, provides the opportunity to understand what they believe led to the emergence of their eating disorder, what maintained it, and what was integral to their recovery. I believe they are the true experts.
Their stories of recovery potentially fill a large gap in our clinical understanding. In addition, their experiences may help provide healthcare professionals with ideas about how to attempt to prevent eating disorders in the context of T1DM and perhaps even how to best treat them. Over the course of my career, I have worked with many women with T1DM and eating disorders. I wish I could say that they all recovered – some did but many did not. 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.”
I recently interviewed 25 women in recovery as an attempt to bring more details to that single sentence. These women spoke of their deepest struggles, fears, and triumphs – all with the goal of helping others. They described aspects of their day to day lives and those particular to T1DM that they felt placed them at risk and described how their eating disorder began. They identified specific ways that diabetes was taught to them by well-meaning health professionals and the unrealistic management goals that were placed on their shoulders. Many felt criticized and misunderstood by some of their treaters. They shared a common, intense fear of insulin and associated it with immediate weight gain. Even though running their blood sugars high felt terrible, their “fear of fat” outweighed the physical price they were paying.
As the eating disorder took on a power of its own, most women described losing “everything” – academic and professional opportunities, their energy and health, romantic, friend, and family relationships, and their overall quality of life. Each had unique explanations for how and why they sought recovery and for what they found helpful in treatment and in the support provided by loved ones. Many identified that concerns about body size and appearance still linger, but that they cope with those feelings without returning to eating disorder behaviors. Everything they gained back from recovery feels more valuable than the false promises of their eating disorder. Recovery gave them the chance to rebuild their bodies, their health, and their lives. They each spoke of creating well-rounded lives that feel “worth getting better for.”
Their life stories provide treaters, loved ones, and those still battling eating disorders realistic hope. Most importantly, they are proof that recovery is possible.
Ann Goebel-Fabbri, PhD is a clinical psychologist who worked at Joslin Diabetes Center and was an Assistant Professor of Psychiatry at Harvard Medical School for over 15 years. She is currently in private practice in which she treats patients with eating disorders and type 1 diabetes and consults to medical teams and loved ones about how to optimally help them. Her new book based on these interviews is titled Prevention and Recovery from Eating Disorders in Type 1 Diabetes: Injecting Hope and is published by Routledge Press.
Ed’s note: You can purchase Dr. Goebel-Fabbri’s book here. Use code IRK71 at checkout to receive 20% off.