Living with Type 1 diabetes (T1D) is a constant balancing act. Diagnosed at age six, I’ve spent over twenty years monitoring food, counting carbs, and calculating insulin doses to keep my blood glucose levels within the ‘target’ range. But for four of those years, during my early to mid-twenties, I also battled anorexia—a struggle that added an entirely new layer of complexity to my life.
The relentless nature of T1D can feel overwhelming. It’s easy to get lost in the numbers, forgetting that there’s a person behind the calculations. In a world where everything felt out of control, I found a sense of order by controlling my calories and exercise. It worked, until it didn’t.
Living with both T1D and an eating disorder puts you at the intersection of two challenging worlds. Around 30% of people with T1D also struggle with an eating disorder. The stigma and misconceptions surrounding diabetes only amplify the risk. For many, this combination leads to a condition known as diabulimia or Type 1 diabetes with disordered eating (T1DE), where individuals deliberately reduce or skip insulin to lose weight. This can have life-threatening consequences— nerve damage, vision loss, kidney damage and osteoporosis. Deprived of insulin, the body cannot break down glucose (sugar) from food to use as energy. Instead the body’s cells break down fat and muscle in the body, and try to flush out the excess sugar through the urine. Weight loss is rapid. But this wasn’t my experience.
My relationship with diabetes was different. While anorexia took its toll, my diabetes management became an anchor, a tether to reality that I refused to abandon. I never stopped taking my insulin; I knew I needed it to survive. My Great Uncle had lost his eyesight and his life in his thirties because of T1D. I was determined not to let history repeat itself.
Navigating the healthcare system with both T1D and anorexia was incredibly challenging. My struggles were often oversimplified, shoved into boxes that didn’t fit. I wanted to scream, “I don’t fit your label!” No two cases are the same, and everyone deserves to be heard, not just categorized.
It wasn’t until years later, after I had recovered, that I began to feel validated. While working as part of the Research Communications Team at Diabetes UK, I attended the 2023 Diabetes UK Professional Conference. For the first time, I saw research that reflected my experience, acknowledging that T1D can coexist with anorexia, rather than always being the cause of it. It was a milestone moment. While there’s still a long way to go, I finally felt seen.
This journey has been anything but easy, but it has taught me the importance of understanding, empathy, and listening—both from others and within myself.
