Some adults with Type 1 diabetes deal with this by using a primary-care doctor mainly to get referrals to an endocrinologist or by seeking out an endocrinologist on their own for their diabetes care. However, an individual’s ability to do this may be limited by a scarcity of endocrinologists in his area, a health insurance plan that limits visits to specialists, or an inability to pay out of pocket for visits not covered by health insurance.
Another possible route to getting good diabetes care is to seek out the services of a certified diabetes educator (CDE) to supplement a physician’s care. CDEs are credentialed health-care professionals who have acquired special knowledge of diabetes and its care. Many health insurance plans cover a certain number of hours of diabetes self-management training per year, and paying out of pocket for additional hours with a CDE may be more affordable than paying to see an endocrinologist.
Many adults also take charge of their own diabetes care by reading authoritative books, magazines, or information posted on the Internet, by talking with other adults with Type 1 diabetes or participating in online forums, or by attending events or lectures that offer information and education about diabetes. Thus empowered, these adults are able to proactively raise concerns related to their diabetes control with their doctors.
Social challenges Many people know nothing about diabetes until they or a close friend or relative are diagnosed. But as more people develop diabetes, and with more media coverage of it, more and more people have at least heard of diabetes. The trouble is, what people hear from their friends or relatives or through the media is not always accurate, and it often does not distinguish between types of diabetes. What people may “know” about diabetes, therefore, may be wrong or may not apply to all types of diabetes.
“For me, the trouble comes from people assuming that with the right diet and a little exercise, I can stop taking insulin like someone they know did,” says George Simmons, 36, who was diagnosed with Type 1 diabetes at age 17. “When I am in social situations where I am around people who do not know about my Type 1 diabetes, I know that at some time I am going to have to spend some time educating this person about the difference between Type 1 and 2.” He goes on to say, “Type 1’s get little sympathy because for some reason, diabetes is a disease riddled with guilt. So many believe that diabetes is caused by eating too much sugar and being fat and lazy. People think you did it to yourself.”
In my own experience, I have noticed that I always say “Type 1” when telling someone I am meeting for the first time about my diabetes, and I quickly follow that with, “I was diagnosed when I was 10 years old.” At age 38, I haven’t lost all of the weight I gained during my two pregnancies, and I know that being overweight is associated in the public mind with Type 2 diabetes. I also know that many people hold the individual responsible for being overweight or for having developed Type 2 diabetes.
Whether or not this attitude is fair, having lived with the challenges of Type 1 diabetes for 28 years, I don’t want someone to think for a minute that I am in any way responsible for having diabetes or that if I just lost some weight it would go away. We adults with Type 1 can carry a bit of a chip on our shoulders, but considering the often inaccurate media portrayal of and public attitudes toward diabetes, this is not surprising.
Charlie Kimball, 25, a professional race car driver who was diagnosed with Type 1 diabetes at age 22, knew little about diabetes when he was diagnosed. Now that he knows more, however, he’s doing his best to educate other young adults about the signs and symptoms of Type 1 diabetes.