I was diagnosed with type 1 diabetes in 1984 at the age of 35. I've been a practicing attorney for 35 years. Diabetes self-management is much more difficult than my professional work, and the stakes can be much higher. Except for the few hours a year when I'm with health care professionals, I'm left alone to make the decisions necessary to maintain reasonable blood glucose levels.
When I served as the national chair of the American Diabetes Association (ADA), I traveled across the country meeting and speaking with thousands of people with diabetes and their families. As I talked to them, I found a unanimity regarding what we value most in our relationships with health care professionals: respect-for the patient's role in treatment, for the patient's need for information, and for the patient's feelings.
Encouragement and support from nurses and all members of the health care team are essential aspects of this respect. It's important that health care providers celebrate the patient's self-management efforts, even when the results are disappointing. Stepping on the scale in the physician's office and waiting for hemoglobin AIc level test results shouldn't be terrifying experiences. But they can be when patients fear the responses of their providers. These numbers don't measure a person's worth, nor do they accurately measure the patient's self-management abilities.
Respect for the patient's need for knowledge about diabetes is also important. The patient must have a basic understanding not just of the pathology of diabetes but of the practical aspects of living with the disease. Diabetes education is essential when seeking to empower patients to self-manage effectively.
Finally, nurses and other health care professionals need to respect the emotional effects of diabetes on patients and their families. In my travels as ADA chair, people with diabetes would tell me how they felt and what scared, frustrated, and angered them. I had similar feelings but always believed I was alone in having these thoughts. But my encounters suggested-and the Diabetes Attitudes, Wishes, and Needs study confirmed1-that these are common emotions among people with diabetes and should be addressed as part of the diabetes treatment program.
Last year I was diagnosed with colon cancer. My feelings of fear, anger, and frustration regarding this cancer pale in comparison with those I have toward my diabetes. My health care professionals did all the work in my cancer care; I simply submitted to their care. Not so with diabetes-there is always something more I can do.
Another thing that differentiated the cancer experience was that none of those health care professionals ever failed to ask me and my family, "How do you feel? Can we help you in any way?" In contrast, few of my diabetes care providers stop to ask me how I am coping with my diabetes and the many things I have to do as part of my self-care. I wish that concern would become the standard of care for patients with diabetes.