According to the Centers for Disease Control and Prevention, 18.8 million people in the United States have received a diagnosis of diabetes and an additional 7 million have it but don’t know they do. The vast majority of people with diabetes have Type 2, in which the pancreas can make some insulin but the body can’t use it properly. (In Type 1, the other main kind of diabetes, the body basically can’t make any insulin at all.) Insulin is what allows the body to process its main source of fuel, glucose.
Not only does having diabetes diminish your life expectancy, but living with it is a daily challenge.
Poorly controlled diabetes can destroy the kidneys and eyes and lead to amputations, heart disease and stroke. You must keep your blood pressure, cholesterol and triglyceride levels in check, often by taking medications, exercising and limiting salt and fat intake. And most important, you need to keep constant vigilance over blood sugar levels. Too little glucose stops feeding the brain properly; too much can damage the body’s cells. Either scenario can lead to injury, unconsciousness, coma and even death.
Yep, it’s a bad disease. But Type 2 diabetes also suffers from an image problem. For many people, Type 1 means cute kids, Mary Tyler Moore and Julia Roberts in “Steel Magnolias.” Type 2, on the other hand, is often dismissed as the disease of poor, fat, old, lazy people who can’t be bothered to take care of themselves.
While it’s true that people with Type 2 are, on average, older, less wealthy and more prone to be overweight or obese than those with Type 1, it is also true that children get Type 2 and adults develop Type 1, and both diseases occur at all income levels. Excess weight can hasten the onset and progress of Type 2. But not everyone with Type 2 is fat, and not everyone who is overweight or obese will develop diabetes. Genetics seems to play a big part, hitting some minority populations hard.
Nonetheless, this blame-the-patient attitude has undermined efforts to give people with diabetes the best care. Our health-care system should be focused on prevention, early diagnosis, offering the most effective treatments available and supporting people with diabetes in their quest to stay healthy. Instead, we’re putting the stigma — and burden — on patients who want nothing more than to be well.
‘Just exercise a little’
Experts are often frustrated that so many people are suffering and dying from a disease that might be preventable and is controllable. “Just exercise a little, cut out dessert, and you won’t get diabetes!” is the shorthand version of their plea, or at least that’s how it often appears in the news media.
But that’s all too easily flipped on its head: If you haven’t prevented yourself from having diabetes or its complications, well, it’s your fault. One idea popular with some lawmakers and employers is to charge people more for their health insurance if they don’t meet certain goals for weight or blood-glucose levels — in effect penalizing many people who are already trying to get or stay healthy. This despite a wealth of evidence that these are difficult changes to make — and that some people may have genetic predispositions that make it all but impossible.
Under our current system, insurers are often more willing to pay for a leg amputation due to diabetes complications than for the education, treatment and support that would have prevented the loss of the limb. When I worked for the American Diabetes Association, I heard about people who were denied full coverage for essential diabetes management tools: blood glucose meter test strips, continuous glucose monitors, diabetes education — even basic lab work.
There’s a similar problem with one of the best diabetes management tools currently available: exercise.
Exercise can help control blood glucose and hasten weight loss. But people who aren’t used to exercising may not even know how to get started, and those prone to low blood sugar may be rightly afraid to do so, since exercise can bring on a glucose low. And many have no safe, affordable place to exercise. But teaching someone to exercise healthfully is generally not a coverable expense.
The same goes for healthful eating and weight loss, two essential components of preventing and controlling diabetes.
The reason that we have such a robust weight-loss industry in this country is that losing weight is hard. If the sole issue was that people need to eat fewer calories — which, no doubt, many do — they would just eat fewer calories. But for most people, losing weight is an intense, often emotional process, and research continues to identify many ways that the body stymies its progress.
And it doesn’t help that high-quality fresh food, the basis of a healthful diet, is hard for many people to get. People aren’t going to eat salads and fruit if what they’re presented with is tasteless and withered. We need to do more than just give lip service to healthful food and make it more widely available beyond upscale Zip codes.
More professional training
Life with diabetes means regular visits with an array of medical professionals — internists, endocrinologists, eye doctors, dieticians, pharmacists. Unfortunately, many of these specialists are often not as well informed as they should be.
When I got pregnant in 2004, for example, my diabetes educator, a certified specialist in managing diabetes care, offered me this nutrition advice: “Don’t go to McDonald’s. But if you do, make sure you get lettuce and tomato on your hamburger.”
Not only is the latter a terrible suggestion (those pale slivers of lettuce and tomato have nothing going for them, nutrition-wise), but the statement was no help to me: I never ate at McDonald’s. My otherwise terrific educator wasn’t looking at me as an individual but as a stereotype of the average Type 2 patient. I have had similar experiences with an anesthesiologist who was reluctant to sedate me fully before a surgical procedure and an OB/GYN who gave me poor advice about insulin use. These medical professionals should be offered additional training to meet the needs of the growing diabetes population and to understand how varied and nuanced those needs are.
The blame game
Like many people with Type 2 diabetes, I have asked myself if I am to blame for my disease. After my diagnosis, I learned that diabetes could be traced back through several generations of my family. A number of other factors beyond my control might also have had a role: my stressful childhood and intense working life (high stress has been linked to diabetes), teenage gingivitis (gum disease is associated with diabetes) and a chronic, severe sleep disorder (another potential cause).
Nonetheless, I still sometimes feel guilty that I didn’t somehow do “better.” I was only about 15 or 20 pounds overweight at diagnosis, not obese by any measure. But what if I’d lost a few more pounds?
I can’t undo any of the factors that unfolded in my past. But if you think that people with Type 2 diabetes are lazy, consider everything I do to manage my condition now.
I stick lancets and needles into my skin about a dozen times a day. Because I use insulin and aim for near normal glucose, I’ll have occasional episodes of low blood glucose, some of which are downright scary. It also means extra finger sticks, because I test just about every time I get behind the wheel of the car, get into the swimming pool or do anything that could conceivably put me or others in danger.
Before each meal, I count the carbohydrates to figure out how much insulin to inject, and I try to inject it 15 minutes before my first bite so that the insulin kicks in at about the same time the glucose does. (Imagine doing this in a restaurant, where you usually have no idea what the carb count is and no way to know when the food will arrive at your table.)
If I miscalculate and don’t take enough insulin, my glucose might skyrocket. If I take too much insulin, my glucose might plummet, and then it’s back to the panic fog. I almost never leave the house without a blood glucose meter, test strips, lancing device, insulin pen, insulin needles, emergency glucose, phone and driver’s license in case I have a low, become unconscious and need to be identified.
I see multiple doctors and spend a lot of money at the pharmacy, despite having relatively good prescription coverage. I even quit my job, in part because I couldn’t do everything I need to do to for my health and also run a magazine. We now live on one salary instead of two, but I have more time to exercise, prepare healthful meals and enjoy my family.
I consider myself lucky. I am healthy — and still, I have diabetes. It’s not going away, and it’s only going to get harder to manage. Let’s stop making it even more difficult for people like me by blaming us for what we didn’t do and start helping us change the things we can.
Sklaroff is a former editor of Diabetes Forecast, published by the American Diabetes Association. She lives in Washington. An expanded version of this article appears in the January issue of the journal Health Affairs