Prevention | Support Strategies
Psyching Out Diabetes
Our thoughts and feelings affect how well we cope with difficulty
My personal experience with the emotional side of diabetes goes back to 1959, when I was 16 years old and my nine-year-old sister Mary Sue developed the disease. At the time I didn't know the first thing about diabetes, so I went to the local library and I read the only book in their collection on the subject. It was a medical textbook from the early 1950s. What I read shocked me. I was told about all of the awful complications my sister would (not could) suffer as a result of her diabetes. As if that wasn't enough, the book went on to tell me that my sister's life would be shortened by diabetes. It even offered a formula to tell me how long Mary Sue would live. I can remember the formula perfectly: Take the age at diagnosis (nine years); calculate a normal lifespan from that age (65 to 70 years); take off one-third. I was chilled by this!
If this formula had truly applied to my sister, she would not have been alive to see the year 2000. Happily, today Mary Sue is not only still alive, she is as healthy as a person who's had diabetes for more than 45 years can be. I know that a lot of things contribute to her good health, among them remarkable advances in diabetes treatment, an enormous amount of hard work on Mary Sue's part, and a certain amount of good luck. Still, in the early days of her diabetes and for all the days since, the emotional impact of diabetes on Mary Sue and on all of us who love her has been substantial. Simply put, diabetes is a hell of a disease, constantly demanding, with countless everyday restrictions.
Almost exactly 20 years to the day after my sister's diabetes was diagnosed, my seven-year-old son developed diabetes. It's a date I'll never forget: April 2, 1979. Over the previous couple of weeks Stefan (or Bean as we call him) had been experiencing some of the classic symptoms of high blood sugar: tremendous thirst and a constant need to urinate. Finally, I realized I should test his sugar level. In 1979 testing sugar levels meant testing urine sugar, and the results of the test told me all I needed to know - Bean had diabetes!
We went to the pediatrician's office the next day to have the diagnosis confirmed. The pediatrician, known to my son as Doctor Bill, has been a friend of mine since we were college undergraduates. As we sat in his office, Bill went through the long list of things we would have to do to help Bean manage his diabetes - all the ways in which our lives had changed forever. I was incredibly upset, nearly overwhelmed by feelings of fear and responsibility. With each item Dr. Bill added to our list of duties and precautions, my spirits sank lower.
Then, just as I couldn't hold back the tears for another moment, Bill said to me, "Okay, Dick, pull down your pants and stick yourself with this syringe to show Bean it doesn't hurt that much." Low as I was feeling, a crazy thought went through my mind: Thank God I'm wearing clean underwear! And do you know what, that absurd thought made me laugh, and that actually raised my spirits a little bit. In that moment I learned a powerful lesson, one that has guided me from that day forward: What we think and what we feel powerfully affect how well we cope with anything difficult in our lives.
With Bean's diagnosis I once again tried to learn everything I could about diabetes. A lot had changed for the better in the 20 years since my sister had developed diabetes. But this time, as a psychologist, I had a special interest in learning about the emotional side of the disease. I searched the scientific literature on the subject and found almost nothing. (Fortunately, the situation is very different today.) So I turned to the real experts, people with diabetes, and those who love and care for them. I immediately discovered that these experts were quite aware that diabetes had a powerful emotional impact.
Since then, I've devoted my professional life to research, writing and lecturing on the emotional side of diabetes. And I'm happy to say that many others are doing the same. That's fortunate, because today dealing effectively with this side of diabetes is even more important than it was in 1959 when my sister developed diabetes or in 1979 when my son's diabetes was diagnosed. That's because of what I call the "good news, bad news" story of diabetes treatment today.
The good news is abundant. Every day brings new advances in our ability to monitor and manage blood sugar levels, to detect complications at the earliest possible moment and to treat these complications before they become serious. I can still remember watching my sister boil her glass insulin syringes to sterilize them in the early 1960s, and testing my son's urine for sugar in the early months after his diagnosis.
Today both Bean and Mary Sue use insulin pumps, and they use the latest blood glucose meters to test their levels four or more times every day.
So that's the good news. What's the bad news? Unfortunately, there's plenty of that, too. Once I was speaking to a group of almost 2,000 people with diabetes. When I asked my audience to raise a hand if they did everything they should to manage their diabetes, only two hands went up. One belonged to a man who had been diagnosed two weeks earlier, and the other to a woman who had been diagnosed less than a week! How can this be? With all our tools for managing diabetes and all we know about the importance of good control, how could this be?
I know the answers are different for different people, but for many they include lack of good diabetes education and lack of optimal diabetes care. But there's another important reason as well: the day-to-day stress of living with diabetes; stress that often leads to a condition I call "diabetes overwhelmus."
