“It must be easier for you because you don’t remember life without it.”
I don’t know how many times I’ve heard that. It bothers me because, first off, I have nothing to compare it to, so how can I say what would be easier? Secondly, what about it makes it easier? Life with diabetes is challenging no matter when you are diagnosed. It’s not a competition.
I was diagnosed with Type 1 Diabetes on November 13, 1995. I was fourteen months old. Young enough that my age could still be counted in months. Naturally, most of us do not have any memories from our first few years of life, so everything I know about my diagnosis is from stories I’ve been told. At the time, my grandmother was my primary caregiver while both my parents were working. One day, my grandmother had begun to worry after I downed back-to-back bottles of apple juice and kept requesting more. She called my mother to tell her that she was worried something was wrong with me, and my mom brushed it off, assuming I was just thirsty. My grandmother insisted, and my mother begrudgingly took me to pediatrics where the doctor snatched my soiled diaper out of the wastebasket and tested it for ketones. I was then rushed to the hospital via ambulance where they formally diagnosed me with Type 1 Diabetes.
My mother managed my diabetes throughout my childhood. I didn’t have the option to learn how to do things independently when I was first diagnosed. I’ll hear inspirational stories of 8-year-olds who are diagnosed and immediately manage their diabetes independently. They are admired for how brave, strong, and independent they are. I always felt like my independent diabetes management was behind track. In school, I was always in the accelerated classes and performed at or near the top of my class. I felt like a failure for not excelling at something.
When I was fourteen, I realized that it was time for me to do my infusion site changes by myself. I would get everything ready, hold the inserter to my skin, and think about pressing the button. I would immediately freeze up and no matter what I did, I could not press it. It was such a simple task, but I couldn’t do it. I would develop a panic attack and eventually, my mother would insert the site for me. My depression and anxiety manifested in the most unusual places.
In the spring of my junior year, after a couple days of uncontrolled blood sugar keeping me out of school, I became anxious about returning and having to make up all the schoolwork I had missed. My anxiety debilitated me to the point that I felt nauseous and couldn’t bear to go to school. It got worse with each passing day, as I got closer to graduation and the great unknown. I began dreading my future because it meant managing my diabetes independently for the rest of my life, and frankly, I didn’t feel ready for that. I feared that if I couldn’t do my site changes, I would never be able to go away to college, and I’d be a failure at life. I had tunnel vision; I could only see my present condition and everything beyond that was shrouded in darkness. My hair started falling out and I began to develop stomach ulcers. Ultimately, I missed most of April, May, and June of my junior year of high school.
Knowing that I could never escape from diabetes, not even for a moment, made me feel like I was drowning. At an early age, I knew that I would always have diabetes, but it never really sunk in until I started to plan for my future. I was angry about my limitations due to diabetes. I wanted to embody the concept of not letting diabetes hold me back from anything and I refused to let me demons win.
I was fortunate that my pediatric endocrinology clinic had an on-site diabetes-specialized social worker. She explained to me that I was experiencing “delayed grieving.” She told me that when people are diagnosed with chronic illnesses, they experience a period of grieving for the life they once knew. Since I was so young when I was diagnosed, I was never able to process that grief and it finally percolated fifteen years later.
We generally associate grief with the loss of a loved one, but the grieving process may occur in response to “the end of or change in a familiar pattern of behavior.” What’s interesting about grieving a diagnosis with a chronic illness is that it is not an event that you move further away from with time. It is always at the forefront of your mind and your daily routine because your health depends on it.
My therapist diagnosed me with major depressive disorder and generalized anxiety disorder and I was referred to an MD to be prescribed a selective serotonin reuptake inhibitor (SSRI). Remember kids, if you can’t produce your own serotonin, store-bought is fine.
Things started getting better. That summer, I attended JDRF Children’s Congress and met my diabetic peers from around the country and world. Those connections and that feeling of belonging saved my life. My therapist coached me through the emotional aspect of my infusion site changes, and I eventually mastered it. I graduated high school on time, with honors, and went to my top choice college the following fall.
It’s been 24 years since my diagnosis, but what may be an even more important milestone is that it’s been 8 years since the lowest period of my life. Life with diabetes never gets easy, but the bad times don’t last forever.
Bolus Witch 