There are many reasons to pursue diabetes prevention—avoidance of the long-term vascular complications (blindness, renal failure, cardiovascular disease) and reduction in healthcare costs are frequently cited. And, of course, these are very important. But there’s another reason to prevent diabetes—the burden of living with diabetes, the day-to-day restrictions (dietary) and obligations (glucose testing, exercise, medications) are substantial and can have a significant effect on a person’s quality of life.
A major focus of my research career has been on the prevention of diabetes, largely through work with the landmark National Institutes of Health Diabetes Prevention Program study. Prevention is so vital because those with type 1 or type 2 diabetes take on a series of daunting challenges. The World Health Organization estimates that diabetes affects about 9 percent of the world’s population, and in 2012 was the direct cause of 1.5 million deaths.
In our zeal to achieve ideal glucose control, we ask our patients to substantially change their relationship with meals—from a source of comfort, pleasure and social interaction to what can often be an experience of denial, guilt and frustration. There is loss of spontaneity when the timing and content of every mouthful needs to be considered. This is especially true for type 1 diabetes, which requires careful matching of food intake with insulin dosing.
We Ask a Lot of Patients with Diabetes
We ask patients to do mental math, keep detailed written records, follow complex formulas of carbs and insulin and remember to take a shot of insulin for that hot dog they grab from the cart in front of the hospital. Of course, we ask them to do these things because we know that controlling blood sugar will reduce the risk of serious health problems in the future—clearly we mean well! But I fear we often do not appreciate how patients experience these demands. I’ve seen this up close, having watched my mother cope with type 1 diabetes for most of her life.
Granted, some patients seem to accept and master these challenges with ease. Others, especially the “free spirits” who tend toward spontaneity and people with chaotic lives over which they have little control, struggle quite a bit. It’s a common refrain in the diabetes clinic: “Mr. X didn’t bring his logbook and forgot to take his insulin—again!”
Put Yourself in Your Patients’ Shoes
It’s easy for us to become frustrated and to blame the patients. But we need to stop and recognize the magnitude of what we are asking them to do. Just as important, we need to find out what THEIR goals are—they may not be concerned with an HbA1c level of 6.5 percent (glycated hemoglobin such as HbA1c is an indicator of longer-term glucose levels), but rather, avoidance of hypoglycemia (low blood sugar) or weight gain, two common consequences of intensive therapy. These are valid goals that should be respected.
Patients Teaching Students
For the past several years, I have invited one of my patients with type 1 diabetes to speak to second-year Albert Einstein College of Medicine M.D. students during our endocrinology course. As she puts it, “I’m not a perfect patient.” Her blood sugars run higher than I’d like and she doesn’t come in to see me as often as she should. But having lived with diabetes for 38 of her 44 years, she has made a series of compromises that allow her to live her life as freely as possible. She tells the students, “Sometimes I just feel like taking a diabetes holiday, throwing that pump and that meter out the window—but I know I can’t because it could kill me.” Students need to hear this; we all do.
For me, the goal of preventing diabetes remains a high priority. Helping people live with it is just as important.