Always on Your Mind
Living with diabetes requires not only vigilance but arithmetic. You have to watch your numbers. There’s the blood-sugar level to be measured one or more times a day and your A1C number, a measure of hemoglobin that summarizes the average blood-sugar level, every few months. You have to stay informed about your blood pressure and cholesterol count. You must know the number of pills or the amount of insulin you need, and perhaps count carbs on your plate.
The most onerous part of the routine involves needles—hundreds a year in the most demanding cases. Checking blood sugar with a glucose meter involves pricking a finger, or some other part of the body, to extract a tiny bit of blood that’s applied to a testing strip and inserted into the meter to produce a digital reading. Insulin is taken with single-use syringes or needle-tipped “insulin pins”—or by way of a high-tech pump that delivers it through a thin plastic tube attached to a port under the skin. On the bright side: Nearly three-fourths of diabetics are able to control the disease without insulin.
Diabetes also takes a psychological toll. Every blurry image is a source of worry about approaching blindness; every tingle sparks fear that a limb might one day need to be amputated. Diabetics may suffer guilt about lacking the discipline to eat correctly or exercise enough. Those prone to hypoglycemia—when blood sugar is too low and dizziness and disorientation ensue—fear an episode while they’re driving or at some other inopportune moment. CNN’s Larry King, a diabetic, tells of once almost passing out on the air while interviewing Betty Ford.
While there have long been support groups in which diabetics get together to share their struggles, message boards on the Web have opened up new venues for trading information. The American Diabetes Association has a dozen of these that get tens of thousands of postings each month. People ask questions about topics ranging from whether to eat Chinese food to summer camps for diabetic kids. And they share a special kind of humor: “You know you are a diabetic when your new ice cream scoop is a teaspoon.”
Nowhere are the frustrations of living with diabetes on better display than on message boards for teenagers, many of whom were diagnosed as young children and now are coping with both diabetes and the confusion of adolescence:
• “I hardly test [my blood sugar]. Poor example, I know. I hate seeing the numbers.”
• “People don’t realize it’s not temporary. It’s for life.”
• “The question is always what did we do to deserve this?”
• “This sounds so mean but sometimes I wish all my friends had diabetes just for a week so they could see how it feels.”
• “I hope for a cure but I can hardly take it. The doctors need to start working harder on it and fast.”
• “I feel so guilty to complain, but I’m sick of this. I hate it. I want my old life back.”
Dating is a concern, especially among girls: “This guy I’ve liked for a long time asked me out a week ago. He doesn’t know I have diabetes. I feel like I should tell him in case I’m having any problems. But I’m scared he’s gonna look at me differently or break up with me.” A consensus soon develops that any worthwhile guy will understand—one girl says her non-diabetic boyfriend carries his own meter and tests with her so she won’t feel alone.
There’s lots of self-consciousness about taking insulin shots in public. James Hirsch, a New York Times reporter who wrote a book about his experiences as a diabetic, tells of once ducking into a peep-show booth in Times Square to take his shot. The teenagers find it amusing that so many people who see them injecting their insulin mistake them for drug addicts.
Sometimes it’s fun to be a little devious: “I memorized a little speech I would deliver to every teacher at the start of the school year about how there might be times when my blood-sugar level got too low and I had to go to the principal’s office to eat a candy bar. And yes, there were a few times when my blood-sugar level wasn’t really low, but I was so bored in class that I said it was anyway.”
They even trade tips on clothing, including everybody’s favorite T-shirt for the diabetic with attitude. It has a graphic of a big hand flipping a middle finger to the world, with a needle at the end of the finger. Above that: I’M SICK OF PRICKS. FIGHT DIABETES.
The good news about diabetes—as Sonia Sotomayor and thousands of others attest—is that it can be controlled and a long life is possible. It’s important to be aware of its symptoms—extreme thirst or hunger, frequent urination, blurry vision, tingling in hands and feet, cuts that don’t heal, or unusual weight loss. And it’s a good idea to get a blood test, especially if you have a family history of diabetes, are overweight, have high blood pressure or high cholesterol, or are over age 45.
Because diabetes can damage so many parts of the body, treatment requires a team of medical professionals. Besides seeing a primary-care physician, there may be periodic visits to an endocrinologist, urologist, cardiologist, ophthalmologist, and podiatrist. Important information also may be gleaned from a pharmacist, nutritionist, exercise expert, or certified “diabetes educator” in a program run by a hospital or other organization.
While regular consultations with specialists are important, diabetes demands disciplined self-management. The main goal is to keep the blood-sugar level as close to normal as possible. The recognized standard is 90 to 130 on the glucose meter before a meal, and it’s possible to be either too high, which is more common, or too low. Once it gets down to 70, there’s a danger of hypoglycemia, which can lead to dizziness or coma. A hypoglycemic episode requires glucose pills, fruit juice, hard candy, or some other food to boost blood sugar back to normal.
Daily testing of blood-sugar levels, despite all the needle pricks, is easier today than a few decades ago. The big advance came with the invention of the glucose meter in 1969—a three-pound device used at first by hospitals to distinguish between unconscious diabetics and unconscious drunks when labs were closed at night. Today’s meters are less than half the size of a cell phone, provide digital readings, and are available in drugstores for about $80.
Another breakthrough, in 1979, was a blood test for A1C, a measure of hemoglobin that summarizes the average blood-sugar level over the previous four months—thus rendering daily testing unnecessary for diabetics whose levels are under reasonably good control. The goal is to keep the A1C level under 7—better yet, under 6.
Other advances in controlling diabetes include oral medications. Some 16 percent of adults with Type II diabetes take oral medications only, and another 13 percent use them in conjunction with insulin shots. The pills work in various ways—stimulating the pancreas to produce more insulin, delaying digestion of carbohydrates to prevent a sudden rise in blood sugar, and increasing the ability of muscles to use insulin. Numerous prescription medications are available, including the popular Metformin, approved by the Food and Drug Administration in 1995 after two decades of use in Europe.