My Diabetes, My Family Centered Experience

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About three months, ago I began a blog entry ("Addicted to Your Self-Management?") about a program my wife and I are participating in at the University of Michigan Medical School. It’s called the Family Centered Experience (FCE)—cofounded and directed by my endocrinologist, Dr. Arno Kumagai. I never followed up on that teaser entry because, while writing it, the topic veered off in another direction. Typical. And, after that, I became sidetracked as I typed in entry after entry about my insulin pump.

To ease my guilty conscience, I plan to spend the next few weeks writing about the FCE. This program is a wonderful way for medical students to gain an understanding of illness from the patient’s point of view, something that prior to this kind of program—which is one of only a few programs like this in U.S. medical schools—wasn’t focused upon. Yes, all that science and doctoring stuff is important, but so is bedside manner.

I kind of wish I’d kept track of the number of articles and comments I’ve read both in print and online since my diagnosis that concern doctors and their inability to communicate with patients or to show compassion and understanding about what it’s like to have an illness rather than a disease. Big city or small town, large hospital or small clinic, it doesn’t seem to matter. Patients with diabetes seem to suffer more often than not with doctors and endocrinologists who, while they may be experts about the disease diabetes, know very little about how to deal with the patient living with the illness diabetes.

Here’s just a snippet of the program description for volunteers (what my wife and I are called, by the way) on the FCE website:

As a volunteer, you will be asked to open your life to the students. You and your family will be an important resource for students to understand how health changes, chronic conditions and diseases affect patients and those close to them. Students will explore important connections between health care and issues such as culture, health beliefs, age, gender and support systems, as well as how patients and their doctors communicate with each other.

In early September, I attended a reception at the hospital to kick off the FCE and met Andrew and Megan, first-year med students who’d been assigned me as their volunteer. A few weeks after the reception, they visited our home on a Wednesday evening for dinner and conversation. Kathryn and I ordered pizza and the four of us sat at the dining room table for over two hours talking about what happened the day of and in the weeks following my diagnosis with Type 1 diabetes only six months earlier. This week, Kathryn and I are meeting Andrew and Megan for dinner and to talk about our experiences communicating with doctors. Then, in mid-December, both Andrew and Megan will accompany me on a visit to my endocrinologist—who also happens to be one of their professors for this program!

You’ll have to forgive me for not going too much into detail about my own experience with the FCE in this week’s post. I’ll write more in the weeks to come. If you have any questions or comments about this program or what it might be like for us to invite two strangers into our home to talk candidly about disease and illness, let me know and I’ll try to incorporate answers into my posts.

Here’s an article about the Family Centered Experience program, if you’d like to read more: “Into the Home, Into the Heart.”

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