People living with type 1 diabetes (T1D), myself included, hear the term self-management quite a lot. This term encompasses the countless choices involved in daily diabetes treatment, from insulin dosing, to food choices, to physical activity, and beyond.

I previously discussed the challenges of self-management in an article about T1D and mental health, which describes how the level of mental labour inherent to living with and managing T1D can lend itself to depression, anxiety, and other mental health comorbidities.

Every day, people with T1D make dozens or even hundreds of decisions in our attempt to replicate the abilities of a fully-functioning pancreas. This decision-making in itself is stressful enough without even considering what we’re almost always making choices about: food.

Questions around what, when, how much—and sometimes even where—to eat are nearly constant, as these choices affect all other decisions involved in diabetes self-management. Insulin doses must be selected, future meals (and doses) considered, present and recent blood sugar factored in, activity accounted for, and so much more.

To the average person, constantly thinking about eating might indicate an unhealthy or at least strained relationship with food. But for those living T1D, behaviors like carb-counting, food-tracking, and others are far from problematic—they are expected.

It is no wonder, then, that so many people living with T1D struggle with disordered eating.

What Is Disordered Eating?

The terms “disordered eating” and “disordered eating behavior (DEB)” describe eating habits that are problematic but that do not meet the criteria for a clinical eating disorder like anorexia or bulimia. Examples can include excessive food restriction, skipping meals, binge eating, or other unhealthy behaviors for weight control.

The line between healthy diabetes self-management and disordered eating is a very fine one, as so many components of diabetes treatment can easily morph into DEBs. As Young-Hyman and Davis (2010) explain, “In the context of diabetes care, strict adherence to these behaviors provides tools by which glycemic control may be achieved.”

Some people with T1D are more susceptible to disordered eating than others. It is particularly common in young people with T1D, and especially in young women. According to Partridge et al. (2020), common factors contributing to the development of DEBs include gaining weight due to frequent hypoglycemia or other effects of insulin therapy; experiencing shame about one’s ability to manage diabetes; having a poor relationship with one’s healthcare team; and/or having hunger and satiety signals overridden by hypoglycemia treatment and fear of hypoglycemia (FoH).

In their 2011 study, Larrañaga, Docet, and García-Mayor reported that among 143 adolescents with T1D, 37.5% of females and 15.9% of males exhibited unhealthy weight control practices, with “between 30% and 40% of adolescents and young adults with diabetes [skipping] insulin after meals to lose weight.” Diabetes UK estimates that around 4 out of 10 women with T1D (and 1 out of 10 men) aged 15 to 30 take less insulin to lose weight. This practice, often called “diabulimia,” is an unofficial T1D-specific eating disorder that presents a significant threat to both mental and physical health.

The physical repercussions of DEBs, including diabulimia, can be significant for people with T1D. As Moskovich et al. explain in their 2019 paper for the Journal of Eating Disorders, “Studies show that disordered behaviors are associated with poor metabolic control and diabetes complications even when full diagnostic criteria for an eating disorder is not met (e.g., binge eating disorder, bulimia nervosa).” Similarly, Larrañaga, Docet, and García-Mayor also report that eating disorders and DEBs are associated with impaired metabolic control, more frequent ketoacidosis, and earlier onset of microvascular complications.

Identifying and Treating Disordered Eating in the T1D Population

The idea that T1D self-management is often linked to disordered eating is not a new one. However, it is a challenging issue to address. For one thing, many of the tools clinicians use to screen for DEBs in other populations are simply not relevant to individuals living with T1D.

Take, for example, the Eating Attitudes Test (EAT-26). This is a valid, reliable screening tool for disordered eating in the general population. In addition to items linked to specific eating disorders, the EAT-26 also includes broader items like, “I feel that food controls my life,” “I display self-control around food,” and “I give too much time and thought to food,” as well as several specific food-focused items, like, “I avoid food with sugars in them.”

These and similar items of the EAT-26 make the test less valid for the T1D population. After all, what insulin-taking person could honestly say they aren’t preoccupied by thoughts of food, or that this preoccupation hasn’t been encouraged by their healthcare providers? I know that I certainly couldn’t.

Aware of the constraints of traditional screening tools, researchers have developed tools specifically for the T1D population, one of which has been validated to date. They are also working to design interventions that fit this population’s unique needs—particularly the need to balance mental healthcare with the other demands of diabetes self-management. In their recent study, Partridge et al. (2020) report that a holistic approach encompassing both mental and physical health needs may be best: “Enabling [people with diabetes] to start talking about their distress, body image concerns and the behaviors they employ to manage their fear of weight gain, seems to be a powerful intervention to effect change and the first step to recovery.”

My Experience with Disordered Eating

Ask anyone who knows me well, and they’ll tell you: I love food. Whether I am cooking for myself or others, revisiting familiar favorites or trying new things, savoring a meal alone or sharing it with my loved ones, I take so much joy from preparing, eating, and sharing food.

Still, I would be lying if I said I’d never struggled with disordered eating related to my T1D management. As most people with T1D could attest, it is difficult to eat when you are not hungry, or to not eat when you are very hungry. It is frustrating to consume unwanted extra calories when you are trying to lose or maintain your weight, or to feel that others are judging you for what they perceive as excessive or restrictive food intake.

At times when I feel like I can’t control my blood sugar, I sometimes have the urge to control my food instead. This aligns with much of the research I’ve read that indicates a link between diabetes distress and disordered eating. In other words, this need for control seems to be a common feeling among people with T1D. Still, that doesn’t make it any easier to say out loud or write about in a blog post.

The only thing tougher than acknowledging mental health challenges, though, is continuing to live with them alone. This is why I am trying to open up about my own struggles and to learn about others’ experiences. I hope that by writing about this topic, I can empower others to do the same.

If you or a loved one with T1D are struggling with disordered eating behaviors or thought patterns, the following resources may be helpful: