My Struggle with Diabulemia

Photo by Thought Catalog

Living with diabetes since the age of 3 has been a challenging journey for me. It has taken a toll on my mental health as I constantly worry about my future and the damage high blood sugar levels can have on my body. I often apologize to my body when my blood sugar levels are high, as it feels like I’m going against my best efforts to live a long life. I also feel anxiety about needing to be prepared for every situation. Growing up, it often felt like I had no control over what my body did, as if it was a separate entity from the rest of me. 

My obsession with controlling my blood sugar levels began when I was younger during basketball practice. I tried to regain control, but my solution backfired when I developed an eating disorder at the age of 7.

It all started during a Girl Scouts meeting while we were decorating cookies. I had never tasted frosting before, as it was forbidden in my world. 

At an early age, I developed shame over eating certain foods that would knowingly raise my blood sugar, which meant frosting, candy corn, and cookies were out of the picture.

When no one was watching, I grabbed the can of frosting, put it in my shirt, and hurried to the bathroom where I experienced it’s sweet, exhilarating taste. Hurriedly, I continued eating it before anyone could catch me. It was at that moment that I developed an eating disorder. 

When I came home from the Girl Scouts meeting, my mom took my blood sugar and the screen flashed 475. “What do you think could’ve caused this high?” she asked me. Due to the shame I felt around sweets and my recent binge, there was no way I could tell her about the frosting. I acted like I had no idea and began sneaking sweets, often smuggling candy into my room or stealing my friend’s cookies, keeping them as my little secret. 

By 10 years old, I started to become more aware of nutrition facts, including the calorie and fat content in the food I ate. This is common for those of us with type 1 diabetes who are already primed to pay attention to the carb content of our food. I continued to binge but added the component of restriction, where I would go a day binging and then a few days restricting. This cycle continued for about 16 years. When I got my first pump in 6th grade, I started manipulating it to control my blood sugar levels, keeping them elevated so that I would not have to eat. I would stop my pump for hours before basketball or track practice just to avoid going low. If I got low, I wouldn’t treat it because of the calories. I stopped my pump and would try to “fight through it.”

Towards the end of middle school, I started taking basketball more seriously and received comments from my coach that the skinnier I was, the faster I became. Even though his intentions were good, my dad encouraged me to join him at the gym before school to become a better basketball player. I became obsessed with losing weight. I started noticing that I was losing weight when my blood sugar levels were high, so I started taking less insulin, just enough for me to survive on. This obsession was destroying my body; something I did not admit to anyone until I was 26 years old.

Throughout high school, college, and in my early twenties, I struggled with body image issues and hated both myself and my body. I spent most of my time thinking about food and exercise. It wasn't until I was 26 that I realized I needed help. My A1Cs were through the roof, and I became suicidal. I checked into an inpatient eating disorder center, where I left with a different, slightly more positive perspective. However, I still struggled with giving my body stability and eating regular meals.

In the past five years, I have challenged my negative thoughts about myself and my body. I have journaled, gone to therapy, and explored where these thoughts originated. I no longer strive for perfection, and I’ve had to let go of trying to control every aspect of this disease. 

Awhile back, I read that we should talk to ourselves like we would talk to our best friend; on days when diabetes is extra difficult, I focus on self-care and self-love. 

I realized that I am a survivor, and my body is amazing, despite the self-hate and sabotage I have put it through. I will continue to respect myself by treating my body and mind with compassion. I honor my ability to work as a teacher, attend boxing classes, and live independently. Even as my body has changed, I have worked hard to change my inner dialogue about my body, food, and diabetes. I make it a priority to thank my body every day for all the amazing things it does for me. It has taken a lot of work, and to this day, I still struggle with categorizing food as "good" and "bad" because of how it affects my blood sugar levels. 

Diabetes can be difficult, often making us feel lonely or isolated. For me, being diagnosed at 3 years old, it would be remarkable if it DIDN’T shape my view of myself and the world around me. Through the years, I have found ways to cope by staying present and focusing on what I’m grateful for. Prioritizing activities that help my mental health like taking fitness classes or taking my dog for a walk have helped tremendously. 

It is amazing how much lighter I feel now that I have removed the heavy burden of self-critical thoughts and perfectionism.

Diabetes still sucks, but I trust that I can handle it all. I am tough. I am resilient. I am strong. Diabetes will never take that away from me.