Life With Diabetes & An Eating Disorder

Something I have hoped this blog (and VIVED for that matter) can become, is a collection of voices that can present the various perspectives of patients, loved ones, and clinicians. While the individual who was kind enough write this piece is not from Vancouver Island (or even Canadian for that matter), I think this piece highlights an important and often underrepresented eating disorder experience (that of life with diabetes mellitus and an eating disorder). These are complicated diagnoses with treatment approaches that often stand at odds with one another. These intertwined conditions present an incredibly complex picture of a patient. This person lives in the U.S. and thankfully there are some resources that are dedicated to treating both conditions simultaneously. Unfortunately, I have not heard of any such resources in Canada at present (although there may be). With both diabetes (although largely Type 2) and eating disorders on the rise, and in a culture obsessed with weight loss, dieting, and "health" to an extreme, it is critical that we look at experiences like this.

I start each day with a finger-prick and end each night with a shot. Several years into recovery from an eating disorder, I was diagnosed with diabetes mellitus, Type 1. This means that essentially my own body is attacking the cells in my pancreas that produce the insulin which allows me to utilize the energy in my food. Suddenly, the mirage was shattered; even though my recovery from an eating disorder had been strong, it had not protected me from illness. In addition to the normal challenges of being a young adult, I now had to contend with facing dangerous blood sugars on my own, dealing with physical and mental exhaustion, and the sheer tedium of checking my sugars approximately 12 times each day. I had always assumed that I would maintain the health I'd had towards the beginning of my recovery, but clearly, this was no longer the case.

Eating disorder recovery can be complicated on its own: making appropriate food choices throughout the day, navigating diet culture alongside any marginalization you experience, as well as expressing emotions healthily and being open to vulnerability. This is further compounded with diabetes. Many diabetes best-practices focus on frequent exercise as a way to control blood sugar, eating only certain kinds of foods, and strategies for weight loss, each of which can often be directly at odds with conventional eating disorder recovery. I’ve gotten jealous of peers in recovery (who aren’t diabetic) who can work towards eating and exercising intuitively, since I need to think so much more about my habits in order to stay relatively healthy. Though eating whatever I wanted today without taking insulin would seem normal to an outside observer, perhaps even recovery-oriented if they knew about my eating disorder, such actions would have dire consequences. Furthermore, clinicians may judge their patient to be at fault for having high blood sugars, which can further deter patients from getting the care they need. While such a reaction on clinicians’ parts is unsurprising, especially given the dearth of education on eating disorders (and diabetes) in general, this does make recovery harder for me.

Unfortunately, I’ve found it easy to justify disordered behavior under diabetes-related excuses, which gives a temporary feeling of relief without any real solace. Needing to calculate the nutritional content of any food or beverage amplifies whatever distress I might feel from my eating disorder; I’ve cried more often from the difficulty of calculating a proper insulin dose for specific foods than I ever had when my eating disorder initially developed. Sometimes I feel trapped in the minutiae of managing this condition - waiting to eat 15 minutes after injecting, high blood sugars resulting from stress or hormones or the macro-nutrient composition of my meal - that eating disorder behaviors feel like an escape.

At times it seems like using behaviors is safer compared to the drastic risks of complications from extreme blood sugars, particularly with regards to diabetic ketoacidosis (DKA). Eating disorder behaviors can result in blood sugar fluctuations, though, from a high blood sugar after a binge to a low from restricting or over-exercising. While low blood sugars can develop in eating-disordered non-diabetics, particularly after using symptoms for an extended period of time, hypoglycemia can be far more extreme in diabetics. As the duration of diabetes continues, at least in Type 1, the pancreas’ production of glucagon and insulin decreases, which leads to more frequent severe highs and lows.

Having diabetes and an eating disorder is exhausting. It can feel isolating in eating-disorder peers’ assumption that everyone’s recovery is like theirs, without acknowledgment of the unique issues you face; in fellow diabetics’ food judgments and orthorexic tendencies; in healthcare professionals’ lack of nuanced understanding of eating disorders, or diabetes, or both. I’m from the U.S., and have been lucky enough to live close to a treatment center that treats people who have both Type 1 diabetes and an eating disorder. Even there, at times it seems I was seen more as a diabetic than specifically one with an eating disorder; the meal plan which I was initially given, standard for diabetics, was smaller than ones I’d used previously in recovery. Though many with Type 1 are resistant to take insulin due to the weight changes it can cause, an understandable clinical focal point, that hasn’t been an issue for me personally.

Between everyday life stress and the challenge of intensive diabetes self-management, relapse has often seemed a tempting option, a way to numb out and avoid all of the difficulties I can literally never perfect. I was far more hopeful about recovery before being diagnosed with diabetes; stability had seemed like a guarantee rather than a gamble. These days, I could develop ketones while getting sick or come close to losing consciousness after going for a walk. These events are relatively rare, but it is still difficult to realize just how little control I have. There’s only so much I can do, both when considering the social determinants of health and this chronic illness. I have no idea whether I could safely live alone due to somewhat frequent hypoglycemia unawareness, let alone whether I’ll be able to afford insulin in the future. With all of this uncertainty, it is so much easier to fixate on the type of bread I’m eating, though I know several grams of carbs wouldn’t make a difference. This constant focus on food and exercise, carb and fat and glycemic index, is tiring as it is, doubly so when I remember that this is likely part of my reality for the rest of my life - not due to disordered habit but necessity. 

I know that I want more for myself than this, but there are no easy answers. I cannot change what has already happened, of course; there is no way I can tamp down my levels of GAD antibodies (which indicate how extensively my body is attacking its own insulin-producing cells) or undo my eating disorder history. For the most part, I have accepted my diabetes. Though I would not choose this, it is what it is, and as time has gone on it has gotten easier. Right now I can’t picture a full recovery for myself, as many definitions of recovered exclude a preoccupation with food that may be necessitated by other health conditions, particularly autoimmune ones. While I don’t have a sense of freedom around food in the way that I once did, I hope that this too will get easier. With each counted exchange and insulin shot, I am moving towards a future where I can accept who I am and embrace flexibility, and that at least, is something. 

Type 1 diabetes is an autoimmune disease, most commonly diagnosed in youth with Northern European heritage, that results in the beta cells (in the pancreas) being unable to produce insulin. Insulin is vital for blood-sugar regulation, and having a high blood sugar level for extended periods of time leads to complications like neuropathy, impaired kidney function, and cardiovascular disease. In Type 1, and less commonly in Type 2, an insulin deficit leads to ketones building up in the blood. Because the cells of the body are unable to access the sugar being stored in the bloodstream, the body begins to break down fat to use as fuel. This makes the blood acidic, which can lead to fatigue, coma, and death. 

It is important to note here that I was diagnosed with Type 1, and that I am a weight that is not highly stigmatized. Because of this, I am not blamed for my condition by the media or acquaintances, nor do I experience the societal oppression that comes from existing in a larger body. Additionally, it is critical to note the demographics of so-called lifestyle diseases, and how such ideas cloud our perceptions. If I were to say that developing diabetes was not my fault, people would believe me; this likely would not be the case if I were fat and/or a person of colour. I think that open dialogue about the various types of diabetes is critical, both among diabetics and non-diabetics. All too often, the condition is both generalized and stigmatized, and education is a powerful tool for understanding. That being said, I only have personal experience with Type 1, so that's what I have focused on in this piece.

- Anonymous (submitted June 3, 2018)