One of my favorite books when I was young was Little House on the Prairie. My mom read the entire Little House series to me as we curled up together in my bed, on the second floor of our house, in the middle of the woods of Vermont. As the older sister in my family, I identified with Mary Ingalls. She was pretty and smart, while her younger sister Laura was sassy and adventurous, much like my younger sister. So I was devastated when my mom got to the part in By the Shores of Silver Lake where Mary lost her vision from scarlet fever at 14 years old. As a visual learner, I couldn’t imagine giving up beauty of the deep green woods behind my home, the butterscotch leaves on the trees in the fall, or even the black-and-white words on the page of a book. I listened with sadness as my mom read the passages where Mary struggled to read the pages of her book as her eyesight weakened. It seemed like such a cruel fate.
I forgot about Mary until years later, when I was diagnosed with Type 1 diabetes at 14 years old (the same age Mary had been when she lost her sight!), and learned about complications of diabetes that included blindness, amputations, and kidney failure. (This was before the results of the Diabetes Control and Complications Trial, or DCCT, were released and showed that intensive blood glucose management reduced the risk of complications and slowed their progression.) I tried to educate myself about diabetes and read stories about people who’d lost their sight, or their leg, to diabetes. I waited in the endocrinologist’s office next to patients twice my age who were sitting in wheelchairs. Even the name of my illness, “diabetes,” sounded like death: “Die-abetes.”
(An important side note is that a lot has changed since I was diagnosed in 1985 in the way doctors communicate with their patients when they are diagnosed with diabetes. There is far less emphasis placed on complications and scare tactics, and more emphasis placed on educating patients on how to live healthy lives.)
These negative experiences turned me into a diligent manager of my blood sugar levels — a habit that increased over time. In my late twenties, I started thinking about marriage and motherhood and worked harder than ever to get my HbA1c down. I’d moved to South Carolina and my new doctor was involved in the DCCT and said as long as I could keep my blood sugar levels as close to “normal” as possible, then my risk of complications was greatly reduced. I began testing my blood sugar 10–15 times a day, injecting myself six times a day, and waiting with anxiety in the doctor’s office every three months to hear my HbA1c result. Every time I had my eyes examined, I held my breath in fear and didn’t relax until the doctor said they were OK.
The upside of this obsessive management is that I’ve lived with diabetes for 31 years and have no complications. In fact, I’m healthier than most people without diabetes because I place a high priority on my health. The downside is that the effort is exhausting. I spend so much time worrying over details and preparing for the future that I don’t look up and enjoy the present. The reality is that diabetes is unpredictable, and no matter how hard I work, I can’t control everything. What I can control is the amount of time I spend worrying about my health. When I start to feel anxious, I can take a deep breath and go for a run. Thanks to the growth of diabetes websites and blogs, I can read about people with diabetes who are living healthy and inspiring lives, with or without complications. Because one day complications might be a part of my plotline, but they will not be the conclusion. They will not be the whole story.
How can you maintain your quality of life with diabetes? Bookmark DiabetesSelfManagement.com and tune in tomorrow for tips from nurse David Spero.