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‘Diabulimia’ adds to complexity of diabetes management
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In this Endocrine Today exclusive, Susan Weiner, MS, RDN, CDE, CDN, talks with Asha Brown, founder and executive director of We Are Diabetes, Ann Goebel-Fabbri, PhD, a clinical psychologist and specialist in eating disorders in type 1 diabetes, and Erin M. Akers, executive director of the Diabulimia Helpline, about “diabulimia,” also known as ED-DMT1, in honor of National Eating Disorders Awareness Week.
What is diabulimia?
Brown: The media-coined term diabulimia refers to the life-threatening practice of a person with type 1 diabetes withholding their insulin to lose weight. While some may find this term catchy, it doesn’t fully describe the full scope of eating-disordered behavior that many people living with type 1 diabetes may suffer from. This might include the act of reducing or omitting one’s insulin, but it might not. Many of my clients through We Are Diabetes do not struggle with insulin omission as a factor in their eating disorder, they struggle with other symptoms.
Akers: Recent studies show that up to 40% of women aged 15 to 40 years restrict insulin in order to lose weight, about half of them (17%-20%) have or will develop an eating disorder and the rest will remain at subclinical disordered eating.
Can you tell us about your organization “We Are Diabetes?” Why did you start this organization and what resources do you offer?
Brown: We Are Diabetes is a national nonprofit that is devoted to supporting people with type 1 diabetes and their loved ones who struggle with eating disorders. We offer one-on-one peer mentorship, unique resources, and a specialized referring service. We Are Diabetes also offers educational programs to clinics and treatment centers. I started We Are Diabetes because there is a great need for services like ours in the United States. There is a large disconnect between the diabetes care world and the eating disorder treatment world. We Are Diabetes strives to bridge that gap.
Discussions and education on ED-DMT1 are crucial and necessary, but the way that discussion is shaped can make the difference between brining awareness and teaching someone how to engage in this life-threatening behavior. It’s important to avoid highlighting the weight loss component, as this reduction in weight is mostly fluid loss and gives the individual engaging in this practice a false belief that insulin omission results in real weight loss.
We offer one-on-one peer mentorship, unique resources and a specialized referring service. We Are Diabetes also offers educational programs to clinics and treatment centers. I started We Are Diabetes because there is a great need for services like ours in the United States. There is a large disconnect between the diabetes care world and the eating disorder treatment world. We Are Diabetes strives to bridge that gap.
What chronic ailments have you developed because of of your diabulimia?
Brown: I suffer with multiple complications due to my decade-long struggle with diabulimia. I have myofascial pain syndrome (a chronic pain disorder) and multiple hormonal irregularities that cause my other chronic conditions (Hashimoto’s thyroiditis and polycystic ovary syndrome) to be very difficult to manage. I now spend a great deal of time trying to management health just to stay functional due to the severe, irreversible damage that has been done to my body. This is another reason that I started WAD; I don’t want anyone else to have to experience the overwhelming consequences of what a decade of insulin omission does to a person’s body, if they survive.
Akers: One of the most difficult aspects of having comorbid diabetes and an eating disorder is that many complications are not reversible. In some ways, I feel lucky. My eyes are still in good shape. My kidneys leak a bit of protein but overall are doing well. I do have peripheral neuropathy which I will deal with for the rest of my life, including painful flare ups. And gastroparesis, potentially the most challenging ailment of all. Imagine having a disease where the prescribed diet is completely contrary to the recommended plan for a person with diabetes. Imaging having recovered from an eating disorder only to develop a disease that can literally make you afraid of food. Imagine a cycle of vomiting so severe that you can land in the hospital for days at a time. Which is why I spend my days not only working to ensure that every person who needs treatment gets it, but also to prevent people from developing diabulimia in the first place.
Akers: Although the practice of insulin omission for weight loss is not new, public awareness about the disease has only come about in the last few years. In 2008, I went to an eating disorder treatment center that left me medically fine, but psychologically shaky and feeling more alone than ever. Neither information nor resources about diabulimia were readily available. I knew I couldn’t be the only one engaging in these destructive behaviors, so I reached out the only way I knew how: the internet. I had to know if there were other people out there who saw their insulin as the enemy rather than a saving grace. Suddenly hundreds of people from all over the world began coming together in the Diabulimia Awareness Facebook support group. We shared stories of hope and survival, of depression and relapse, each of us finally happy to have someone who truly understood the nuances of battling an eating disorder and diabetes. But many that reached out needed so much more than just camaraderie so in 2009, the Diabulimia Helpline was formed.
What resources does the Diabulimia Helpline offer?
Akers: The most important thing the Diabulimia Helpline does is give people a chance to once again, dream, believe and hope. To that end, we offer a 24-hour hotline (425-985-3635) for those struggling, their loves ones and health care professionals; three online support groups; the Diabuddy mentoring program; a referral service to help people find the right treatment center or local doctor/therapist/dietitian; an insurance specialist to help the person get treatment authorization; our Healthcare Professional’s Education Program that offers webinars and onsite training; and a treatment program certification process. For more information please see the website, www.diabulimiahelpline.org or contact info@diabulimiahelpline.org.
Is diabulimia classified as an eating disorder?
Goebel- Fabbri : It is important to note that not all people with type 1 diabetes and eating disorders restrict insulin and may have more classic symptoms of anorexia nervosa or bulimia nervosa instead. However, the large majority of research in this area has focused on women who do have this particular eating disorder symptom as part of their clinical picture.
It is especially important to note that diabulimia is not a formal eating disorder diagnosis but a name coined by laypeople and the media. Regardless, the name is a helpful way of raising awareness of just how widespread and dangerous insulin restriction is.
How should health care professionals approach this problem?
Goebel- Fabbri : The few studies that have examined treatment effectiveness for eating disorders in type 1 diabetes report that, compared to patients without type 1 diabetes, those with eating disorders and diabetes had higher treatment dropout rates and lower rates of recovery. It may be that, patients with type 1 diabetes require longer and more intensive eating disorder treatments compared with those without diabetes. It is also likely that diabetes-specific adaptations need to be made to research-supported treatments that were originally designed for patients without diabetes. Treatment teams, loved ones and those who are struggling themselves need to know that women can and do recover.
Clinical consensus guidelines have been published for the treatment of eating disorders in type 1 diabetes and are based on the agreement of expert clinicians rather than empirical support. A multidisciplinary team approach to treatment is essential for both eating disorders and diabetes treatment and should include an endocrinologist, a nurse educator, a nutritionist with eating disorder and/or diabetes training, and a psychologist or social worker to provide weekly individual therapy. A psychiatrist may also need to be added to the team for psychopharmacologic evaluation and treatment.
Helping patients to identify and anticipate possible treatment challenges may solidify the treatment relationship and possibly decrease the risk of treatment dropout. The first challenge most patients face is weight gain associated with improved blood glucose. Patients need to be reassured that this is related to fluid retention or “insulin edema” and will be temporary. Because patients with eating disorders are exquisitely sensitive to body shape and weight changes, this rapid weight gain just as they are starting to engage in treatment can be frightening. In fact, they may reveal that this triggered relapse in their past. Once fluid levels have stabilized, patients’ ongoing concerns about weight must also be taken seriously by the treatment team. When patients attempt to lower their blood glucose ranges and experience unwanted weight gain unrelated to fluid, their frustrated attempts to lose the weight may again raise their risk of relapse.
Some patients report that treating hypoglycemic reactions can trigger them into episodes of binge eating. Other patients worry about taking in these extra calories and, therefore, fear having to treat hypoglycemia. To reduce their risk of bingeing or overtreating, patients should be encouraged to use fast portion-controlled treatments for hypoglycemia like glucose gels or tablets, which may be less tempting to overeat. Risk of recurrent hypoglycemia and related weight gain can be decreased by frequently reviewing blood glucose patterns with the patient and making insulin adjustments accordingly.
For more information:
Erin M. Akers, herself recovered from diabulimia, is the founder and executive director of Diabulimia Helpline as well as author, speaker and tireless advocate for those struggling with the comorbidity of diabetes and eating disorders.
Asha Brown is the founder and executive director of We Are Diabetes. She uses her professional experiences with ED-DMT1 to offer hope and support to those still struggling. She writes for numerous websites, including Diabetes Health, Diabetes Daily and Beyond Type 1. She is a member of Diabetes Advocates and Binge Eating Disorder Association.
Ann Goebel- Fabbri , PhD, is a clinical psychologist and specialist in eating disorder in type 1 diabetes, whose book, Prevention and Recovery from Eating Disorders in Type 1 Diabetes: Injecting Hope, was published by Routledge Press in 2017.
Susan Weiner, MD, RDN, CDE, CDN, is the 2015 AADE Diabetes Educator of the Year and author of The Complete Diabetes Organizer and Diabetes: 365 Tips for Living Well. She is the owner of Susan Weiner Nutrition PLLC, and is the Endocrine Today Diabetes in Real Life Column editor. She can be reached at susan@susanweinernutrition.com.
Disclosure: Akers, Brown and Goebel-Fabbri report no relevant financial disclosures. Weiner reports being on the advisory board for Livongo.