WHAT MOTIVATES US WITH DIABETES: NUMBERS OR NORMALCY?

When diabetes first invades our lives, we fight back. How we fight back changes over time. I don’t mean the tools or knowledge we possess, but the reasons WHY we apply them in our daily lives.

Our first diabetes motivator is usually fear. It’s handed to us on a silver platter when we’re diagnosed. Free advice rains down upon us like a monsoon. It’s a constant bombardment of cautionary tales from friends, family, co-workers, and of course the medical profession. When I was diagnosed, we like most others were utterly ignorant about diabetes. The public’s perception of the differences between diabetes types was in its infancy when I was diagnosed. People generalized about what would happen to me based on stories from the previous decades. Furthermore, my diabetes doctor was not an endocrinologist. He was a skilled pediatrician and did what he best knew how to do, but without any educational resources to back him up. Our “education” was the Joslin Manual. I couldn’t read it at age 9 and had no clue. I tried a couple of pages and tossed the book on the table. Very little about diabetes was kid-friendly back then.

The stories of blindness, amputation and early death would lurk in the corners of my mind for years. Never did anything I saw or heard act to dispel these fears. They festered. Nevertheless, I went on with my life and was loved and supported unconditionally by my family, who did everything they were told. We only had blood sugar measurements collected at checkups: a small metal lance was poked into my thumb to extract a sample of blood when I was fasting. That was the “A1C” of the sixties: a single blood sugar value done every several months.

BG measuring devices would not appear in homes for over a decade. Often, they were just visual strips and not read by a meter of any kind. You even needed a water source to rinse the blood off the test strip to allow a color change to happen before reading the result visually. Those were bulky and not easily carried around.

So, fear of diabetes complications was my first diabetes motivator and remained with me for years. As I was not taught to fear the results of the lone BG check when I went to see the doctor (I feared to collection process far more!), the results carried no real emotional burden on me that I recall. The urine glucose testing apparatus we used was color based. Blue (no sugar) was always a preferable color to see as opposed to bright orange (lots of sugar spilling into the urine). Therefore, I was spared the fear of bad numbers when I was a child growing up with diabetes. It’s why I teach all my patients that use of the words ‘good’ and ‘bad’ should have no place in a discussion of blood sugar levels.

The creation of the A1C test in the late 1970’s ushered in a new fear to deal with. My first A1C was done in 1980. The result was 10.8%. This was after years of taking a single injection daily: that’s it. By now I was in medical school and was learning what an A1C was. Over the next 15 years, we would come to learn of the association of lower A1C results with reduced risk (not full elimination of risk) of certain (but not all) long-term complications of diabetes. Over time, the A1C would go on to become one of the greatest “fears” I see each day in my medical practice. Fear of the A1C result is visible on the faces of parents and some teens when I open the paper with the point of care A1C result. The facial expressions and comments which follow the release of this information are revealing of the fears which lurk within.

As home blood sugar monitoring expanded through the 1980’s, now the ability to judge numbers went into overdrive. More fodder for the fear monster.