The Road to Diabulimia Helpline
By Erin M. Akers
(This is the first of a 2-part article that addresses Eating Disorders and Type 1 Diabetes and the formation of Diabulimia Helpline. Part II will appear in our December 2017 issue and can be accessed by clicking here.)
Nineteen years ago, at the age of nine years old, I was diagnosed with Type 1 diabetes. It was, up to that point, the most terrifying day of my life. I was being told that I would have a chronic illness for the rest of my life. Suddenly, my normal childhood of running through sprinklers and picking blackberries was being replaced with daily finger pokes, counting carbohydrates, and calculating insulin ratios based on those numbers. This exhausting routine, known as mental math, was to be done every time any amount of food passed through my lips. Can’t sleep and hoping a cup of milk will help? Well, that’s 12 grams of carbohydrates, so you better test your sugar and calculate how much insulin you’re going to need before a single drop of that milk enters your body. Overnight my entire life became solely focused on numbers. Were my blood sugar numbers in range? Were my carb counts accurate/low enough (because most diabetes educators like to encourage all diabetics to eat low-carb regardless of age or weight)? The diabetic curriculum fostered, if not encouraged, a sense of intensely strict rigidity in one’s life. Many diabetics talk of feeling like a walking number representing their worth as good or bad. I once heard Dr. Ann Goebel-Fabbri, author, psychologist and renowned expert on comorbid eating disorders and diabetes, say it best, “Teaching a person to be a ‘good diabetic’ is akin to teaching them how to have an eating disorder.” The numbers also speak for themselves – women with type 1 diabetes are 2.4 times more likely to develop an eating disorder than their non-diabetic peers.1 A study in the chart below compares different eating disorder behaviors between those with diabetes and those without.2
Type 1 diabetes (T1D) is an autoimmune disease in which your immune system attacks the beta cells of the pancreas resulting in the inability to produce insulin. Without insulin the body cannot utilize the food you eat, resulting in a starvation state within the body. People with T1D are thus put on synthetic insulin, either through multiple daily injections or a pump, a medical device they wear on their body at all times. For the first few years I tried my hardest to be the “perfect diabetic” testing my blood sugar 3-7 times a day, learning the carbohydrate count of every morsel of food, and giving myself insulin for everything I ate. But there’s a problem with diabetes education that pervades to this day. They make it seem like if you do everything they teach you, you can achieve perfection in your diabetes control. But many things affect the blood sugar in addition to food and insulin: stress, hormones, exercise, and even extreme hot and cold weather can sway blood sugars. Even eating the same thing day after day and taking the same amount of insulin, I can end up with different blood sugar readings. For a diabetic who has been told from the very beginning those “bad” blood sugars will result in horrible consequences and eventual early death, this inability to achieve perfection, no matter how hard one tries, often results in a researched phenomenon in the diabetes world known as diabetes burnout.3
Then came the appointment that was the catalyst for my entire eating disorder. I was a medically overweight teenager and at one of my appointments my endocrinologist said to me, “You’re a diabetic; if you don’t lose weight, you’re going to die.” I was a teenage girl, already primed for an eating disorder, and the man that was like a paternal authority figure to me had just informed me that without losing weight I would die. After four years of trying and failing to achieve perfection in my diabetes life, I felt like a failure in my whole life. I didn’t care about anything anymore. If I couldn’t achieve the perfect blood sugar numbers he wanted, then I would just quit trying. It was an exhausting disease, and I was going to die anyway, I reasoned. At first I just stopped testing my blood sugar and estimating the carbohydrate count in foods, and then eventually, I just stopped giving myself shots all together. Ultimately, I was omitting so much insulin that I landed myself in the hospital with diabetic ketoacidosis (DKA). This was the beginning of my long and disturbing relationship with an eating disorder known as diabulimia. I would not be the only diabetic to go down this twisted path. 1/3 of female and 1/6 of male patients with T1DM reported disordered eating and frequent insulin restriction.4
Diabulimia is a media coined term to describe people with diabetes who purposely restrict or omit their insulin in order to lose weight. Diabetics come to this eating disorder through all sorts of avenues – some seeking this secret weight loss method they’ve heard whispered on the Internet or at diabetes camps. Others, like me, fall into it – tired and experiencing diabetes burnout, they realize their weight loss is associated with the lack of insulin, and already in a vulnerable place, they develop a full-blown eating disorder. Diabulimia or ED-DMT1 (Eating Disorder-Diabetes Mellitus Type 1) is a sub-classification of purging behavior. It works through a three-pronged mechanism: purging of calories through the kidneys in the urine, dehydration (the equivalent to taking a prescription-level high dose diuretic 24-7) and ketosis, the body breaking down its own tissues.5 No matter how much you eat or drink, your body can’t utilize any of it without the proper amount of insulin. I often like to refer to a line from The Pirates of The Caribbean movie in trying to describe what this state feels like, “The drink would not satisfy, food turned to ash in our mouths.” No matter how much food you eat, your body is still starving; no matter how much water you drink, you are always parched. I, much like my eating disorder, had a thirst that knew no end. This constant state of near, or full-blown DKA, is unbelievably painful; your whole body aches as every cell screams out for nourishment and your blood, turned to acid by high blood sugars and ketones, scrapes against every small blood vessel in your body. The longer you let your body sit in this state the worse the symptoms get, nauseated to the point of being unable to keep simple liquids down, and eventually, it is laborious to even breathe. Every T1D knows these risks; we’re lectured repeatedly at every appointment since the very first diagnosis.
So why are 30-37% 6,7 of young diabetic women and 9.4% 8 of young diabetic men omitting their insulin and enduring not just immediate body rippling pain but irreversible diabetic complications? There are known eating disorder traits exacerbated by diabetes such as black and white thinking, “If I (my blood sugars) can’t be perfect, I might as well give up.” Diabetes diagnosis has also been shown to feed perfectionism and OCD tendencies, 9 as well as people with diabetes feeling different, difficulty with controlling and coping, and poor body image.10 There is also a much higher incidence of mood disorders, especially depression and anxiety, in both men and women with diabetes.11 And while there was an almost obscene amount of attention in my life placed on meal planning, portion size, label reading, exercise, and weight, there was no acknowledgement of the emotional side of diabetes. I was constantly being bombarded with images of what the world thought of diabetes, often cruel jokes at my disease’s expense, what I thought of as “my” expense, yet not once was I given the tools to handle that aspect of my disease.
After five years living behind the bars of my eating disorder, my own body had become my very imprisonment. I decided I wanted, I needed out. When I had to be flown home to Seattle from college in Boston because a staph infection nearly killed me, I realized I wasn’t in control anymore. Next thing I knew my parents were sending me to an inpatient facility that claimed they knew how to treat someone with diabulimia. Three months at that not-so-great inpatient treatment facility taught me two very important lessons. The first being that any eating disorder treatment center could say they treated diabulimia, but it didn’t mean they actually knew what they were doing. The first day I arrived they thought I was a diabetic with bulimia and offered to take care of my food if I’d handle my insulin… The second thing it taught me was that people with diabetes and an eating disorder needed a special place to talk about our special circumstances.
The week after I left that center in Florida I got home and formed Diabulimia Awareness, the world’s first support group for diabetics with eating disorders. It was an online group that utilized the Facebook platform to bring together, what I hoped, would be hundreds of girls from all over the country to commiserate or motivate. I had done my research, and studies into insulin omission dating as far back as the 80s showed it being a pervasive problem. After a year, I had hundreds of girls from all over the world. By the second year we were nearing a thousand and now had members from all 5 continents and they all needed one thing: more help. They weren’t just calling out for camaraderie, they wanted resources, access to better care, and a better diabetes education plan for their doctors; they wanted answers. So I called a major diabetes organization and explained what diabulimia was and that the research since the 80s showed this was a problem affecting upwards of 30% of T1D. They told me this was an eating disorder problem and to call an eating disorder organization. So I did. But when I called the eating disorder organization, they told me it was a diabetes problem. I didn’t care what you called it; however, I just wanted an answer – for me, for my friends, for my community. We yearned for answers to some serious questions such as, “You tell me this will heal my body again, but my body is broken; came to me that way and nothing is going to change that.”
This article continues, to continue reading and access part 2, please click here.
About the author:
Erin M. Akers is the founder and Executive Director of Diabulimia Helpline , the world’s first non-profit organization dedicated to support, advocacy and awareness for those struggling with diabetes and eating disorders. Erin co-organized the 16 state nationwide March for Health in defense of people’s access to medical care in April, 2016. Erin has written for numerous publications, such as Diabetes Forecast, Diabetes Health, Diabetes Care and the academic journal PLAID. She has also appeared on Huffington Post Live, NBC News, and Discovery Health Channel to discuss diabulimia. Erin is a member of Diabetes Advocates, the American Diabetes Association, Binge Eating Disorder Association, a National Eating Disorder Association partner and an Americans for Access Board member.
- Jones et al, 2000, Smith et al, 2008, Colton et al, 2009
- Daneman D, Rodin G, Jones J, Colton P, Rydall A, Maharaj S, Olmsted M. Eating disorders in adolescent girls and young adult women with type 1 diabetes. Diabetes Spectrum 2002; 15(2): 83-105
- Heyman, Mark. “Diabetes Burnout.” Beyond Type 1, 12 Apr. 2016, beyondtype1.org/diabetes-burnout/.
- Bächle C, Stahl-Pehe A, Rosenbauer J. Disordered eating and insulin restriction in youths receiving intensified insulin treatment: Results from a nationwide population-based study. Int J Eat Disord. 2016 Feb; 49(2): 191-6
- Akers, Erin, Lee-Akers, Dawn, Gaudiani, Jennifer. “Eating Disorders in Type 1 Diabetes: A Case-Based, Evidence-Based Comprehensive Review of Diagnosis, Treatment, and the Role of the Multidisciplinary Team.” International Academy of Eating Disorder Professional Conference, Beating The Odds. 24 March 2017, Henderson, NV. Conference Presentation.
- Goebel-Fabbri A, Fikkan J, Franko D, Pearson K, Anderson B, Weinger K. Insulin Restriction and Associated Morbidity and Mortality in Women with Type 1 Diabetes. Diabetes Care (2007).
- Fairburn, C, Peveler R, Davies B, Mann JI, Mayou R. Eating Disorders in Young Adults with Insulin Dependent Diabetes Mellitus: A Controlled Study. British Medical Journal 1991; 303.
- Wistig L, Froisland DH, et al. Disturbed Eating Behavior and Omission of Insulin in Adolescents Receiving Intensified Insulin Treatment. Diabetes Care. 2013 Nov; 36(11): 3382-3387.
- Lee-Akers, Dawn. Biological and Psychological Risk Factors for Eating Disorders in Type 1 Diabetes. Poster presented at: Annual Conference of American Association of Diabetes Educators; 2017 Aug 4-7; Indianapolis, IN.
- Powers MA, Richter SA, Ackard DM, Cronemeyer C. Eating disorders in persons with type 1 diabetes: A focus group investigation of early eating disorder risk. J Health Psychol. 2016 Dec;21(12):2966-2976
- Anderson RJ, Freedland KE, Clouse RE, Lustman PJ. The prevalence of comorbid depression in adults with diabetes: a meta-analysis. Diabetes Care. 2001 Jun;24(6):1069-78