I remember when I was a young girl and I would tell people that I had a disease. My mother would quickly correct me and explain that what I had was not a disease. It was a condition. Either way, dealing with Type 1 Diabetes as a child was nothing short of challenging for me and my family.
When I was diagnosed at the age of two, the doctors sent my mother to a support group that held meetings at the hospital. This support group was formed to comfort parents of patients with Type 2 Diabetes and in 1986 the Type 2 condition was far from the future that I was facing. The members showed my mother pictures of patients that were missing limbs and bed-ridden. I can’t imagine being 28 years old with a newly diagnosed daughter and staring at those photographs. I believe it goes without saying that she never went back to that support group.
My childhood was spent measuring food, explaining my condition to my teachers, taking four insulin injections per day, getting blood drawn from my tiny arm several times a year, and analyzing every decision I made. How long do I want to play outside? Do I want to eat that cookie? How long will I be at a certain location? Do I need to take a snack with me? I had to grow up fast and know that every decision I made had very distinct consequences. I didn’t have the freedom that children often have to make mistakes. A mistake could be very costly.
I had to quickly develop an alter ego to my shy personality that could speak confidently to adults. I often had to communicate that I needed food or I felt bad and needed help. Not every teacher or authority figure understood diabetes and in some cases they felt they needed to consult with my parents before giving me the help I needed. I didn’t always have that extra time and after a few of these confrontations, I became an authoritative 10-year-old.
Growing up is difficult enough when you’re trying to navigate through the world while avoiding peer pressure and the normal challenges that go along with being a teenager. During the time of my life when I was trying my hardest to fit in, I couldn’t avoid being different. There were no other diabetic kids that went to school with me and there was no one in my life that could understand how I felt or what I was going through. I felt like my body was broken and there was nothing I could do to repair it. And with only myself to navigate those waters, I came out on the other side as a strong and independent person.
Diabetes also added a challenging element to dating. When I was 22 years old, I became engaged to a man I was prepared to spend the rest of my life with. During a casual conversation, I mentioned that he may need to give me a shot one day to save my life. With a serious tone, he let me know that he didn’t think he could give me a shot. If I really needed him in a life threatening situation, he wasn’t going to be able to rise to the occasion. I had a hard decision to make. In that moment I realized that I couldn’t afford to spend the rest of my life with him like I planned. Those words left a scar that continues to haunt me.
I’ve been on an insulin pump for 12 years. (Imagine a small IV attached to you.) I test my glucose level multiple times a day through a finger stick. It’s very manageable but requires that you make the effort every day to be as healthy as possible. It’s a decision that I make every day… to be as healthy as I possibly can.
Tweny-six years later, I have no complications due to diabetes. My eyes, heart and feet are all in great shape. But I have to work at staying on the right path because every day I wake up and want to give up. That negative thought is trumped by wanting to have a long and happy life. And that is my motivation to stay positive.