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Living With Diabetes and an Eating Disorder: A Personal Reflection

In recognition of World Diabetes Day on November 14, 2021, Erin Fenlon graciously contributed this NIED Blog.


When I was diagnosed with Type 1 diabetes at age 8, I thought the worst part was going to be the needles. After a few months of daily insulin injections and finger pokes, it turned out the needles were the easiest part to adapt to. The hardest part was my new reality around food. In the beginning I followed a specific meal plan and stayed within certain mealtimes and counted my carbohydrates to stay within a certain range. At 8 years old, I could read a nutrition label with ease. Being able to be more flexible with my food didn’t make things simpler, in fact it required more calculations and paying more attention to blood sugars and corrections and exercise. I longed for the days when I could just grab a snack without a second thought.

Then there was the dreaded “food police” which were those that would single me out while eating something like a cupcake with their well-intentioned “Should you be eating that?” For me personally this always brought about feelings of shame and guilt.

With so much direct focus on food and exercise and counting, is it really surprising that so many diabetics end up with an Eating Disorder or disordered eating? Studies show that individuals with Type 1 diabetes are more than two times more likely to develop an Eating Disorder than those without diabetes.

Many people with diabetes and Eating Disorders engage in insulin restriction or omission, which is a behaviour that can cause dangerously high blood sugars and can result in a person going into diabetic ketoacidosis (DKA), which can be fatal. Identifying an Eating Disorder with diabetes can be challenging. There’s often a lot of shame around this symptom, as individuals often label themselves as ‘bad diabetics’. In addition to this, many doctors and endocrinologists simply write off high blood sugars as non-compliance, not recognizing it can be a sign of something else going on. What is really needed is for endocrinologists and ER doctors to be informed of the signs of Eating Disorders in those with diabetes. These signs include high blood sugars, the individual being secretive about their blood sugars, and frequent episodes of DKA. All are indicators that something deeper is going on.

When supporting someone with diabetes and an ED, I think it’s important to recognize diabetics know what we’re doing is dangerous and illogical. Most of us have heard about the terrifying long-term complications that we’re up against…but omitting insulin can become a compulsion or addiction, similar to any other Eating Disorder symptom. Being supportive means being willing to listen, being a cheerleader when needed, and to just be there for the person and not give up on them.

Managing diabetes is already a full-time job with no breaks or vacation. It’s constant planning, counting, adjusting, measuring, and a lot of frustrating trial and error moments. Next there’s recovery, which is also a full-time job and together, all this creates an intimidating challenge. But while being a challenge, recovery from an Eating Disorder while managing diabetes is possible.

It absolutely will not be a perfect journey, blood sugars will still have their up and down moments and urges to engage in ED symptoms will still be present. But slowly, as the confidence builds, it becomes easier to respond to the bad blood sugar days and easier to ignore the ED voice. What can really make a difference is having a team of professionals–including an endocrinologist, dietician, psychiatrist and therapist–who work collaboratively.

Having open communication between not only just the specialists in diabetes and Eating Disorders, but also with the individual in recovery can provide the ideal support needed for recovery.

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