My Diabetes, My Family Centered Experience

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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  • Michelle Mackin

    Are you living with diabetes? Living with such a disability is not quite what the medical professionals will tell you. When you have personally experienced the fluctuations and effects of diabetes you will notice that they don’t always line up with what the medical “experts” tell you. The medical professional’s textbook knowledge has no real conception of what it is really like. Don’t get me wrong, I have much respect for their knowledge, but, it is often only textbook knowledge and not a personal knowledge of what it is to live with such a disease.

    I have been a Type I diabetic for 33 years. One year prior to my diagnosis, the doctors missed properly diagnosing me with diabetes. They tested me for everything else though. Once diagnosed, I spent two weeks in a coma in the hospital ICU. My blood glucose was higher than I have ever heard of. I was told I reached somewhere over 1000. Through the years, I have also survived insulin shock many times with my lowest sugar hitting 18. God has never let go of me through all of this, and according to my doctors I should not be alive.

    Since being diabetic, many doctors have told me what to do and what not to do according to their education. Now I am not the most compliant patient a doctor could want, but I have learned what my body is doing to me and what I need to do to remedy the problem. I use an insulin pump and I know when to take an extra injection if my sugar goes to high. I know when to drink juice and eat crackers if sugar gets to low. If I am incapable of getting juice for an insulin reaction my husband or sixteen year old son know exactly what to do. I have both eyes, all my limbs, and despite the extreme sugar level variations, I believe I still have a couple of brain cells that are active.

    Some of the suggestions I can recommend to those who suffer from diabetes would be to know your body and how it reacts to different things like carbohydrates, exercise, stress and anything out of the ordinary. I have a primary care doctor who is a very good listener and of course I occasionally see the endocrinologist and podiatrist. Oh, and let us not forget the optometrist.

    I have had a few horrific experiences with doctors over the years. My worst one was when I had a doctor tell me I would die and so would my first baby and that I should consider an abortion. Of course I switched doctors. Today, I have a set of healthy twin boys, another teenager and I am a grandma of two more boys.

    Then there was the time my insulin pump broke and the doctor prescribed so much insulin that I went to work and then woke up in the Emergency Room with my glucose at 20 and telling the nurse that I had a tubal litigation! Then I wondered why the nurse and my husband were laughing. By the way, the right tube won! Then both tubes left me. LOL. Yep, should have gone with my instinct. My husband and I were both startled and thought twice before I took that much insulin again.

    I could go on forever. That, however, would be a book. Even a nurse told me I should write a book about the things God has brought me through and title it Blessed and Highly Favored (hmmm?). I told her she would have my first copy if I ever got that far. I believe without a shadow of a doubt, that God has a plan for me.

    My main reason for telling my story is because I have had doctors tell me from day one that I would never make it. If that were the case I wouldn’t be writing this now. So, remember to talk to your physician but also trust your body and use your experience. For the doctors who might not agree with me, check my A1C, it was 7.2. Not bad for a 33 year diabetic.

  • /Dianna Inkster

    Dear Michelle:

    I hear you! My husband has been a type 1 (LADA probably)since 1978 and I started going out with him in 1979. He is over 64 now and despite having no further training since the week he was diagnosed, he is still with us even though others close to us, but non-diabetic have passed away.

    Sometimes, I feel very angry with the no information policy of our 2 endos over the years. The two of them told other patients in advances in the detection of high and low blood glucose levels and put them on multiple injection therapy and showed them how to use glucagon kits over the years.

    Because my husband has no hands and couldn’t test until alternate bg meters came out in 2001, we taught nothing. After my husband passed out at work shortly after we started testing, it was recommended that we go onto an insulin pump.

    A year after the introduction of the insulin pump, our funding for a healthcare worker was taken away. That was 8 years ago. Later we got 1 test per week for a while back. Last Oct. I had to go into hospital for 3 days. Guess what?
    We got a Registered Practical Nurse to test my husband’s bg, insert a sensor and change a set over 3 days at various times between 8 am and 8 pm. Times do change.

    Through it all we have to keep smiling and be positive. We also have to be the change we want to see in the world.

    God bless.