Diabetes patients learn something special from each other
Posted Mar 25 2010 8:59am
I've just returned from Scottsdale, Arizona. It was a lovely trip. I was attending the annual meeting of the peer-mentor group I belong to. About 80 of us mentors and staff gathered under sunny skies to learn and bond.
The programs we deliver as mentors provide some information and education but largely provide inspiration to fellow patients through our own personal stories of struggle and success.
Patients learning from patients is a very different kind of education than patients learning from medical professionals. And it's happening more and more.
Patients go online, follow diabetes bloggers and volley what they know back and forth. Patients learning from patients is about a shared bond and experiences.
This led me to reflect on an early presentation I gave in Buffalo, New York. It was the first time I was double billed with a diabetes educator. Her talk preceded mine, so I leaned back and listened. What I heard was forty-five minutes of numbers: A1Cs, blood pressures, weight and weight control, exercise, portion control, and carb-counting.
While this is all important information, I also heard what she left out. That these goals are not easy. That we have to find a way to fit it all into our day. That a small step in the right direction is to be applauded. That we should pat ourselves on the back for every good effort.
The purpose of my talk I quickly saw would be to say what she did not. To talk about how we hold diabetes in our lives and if necessary how holding it differently can help. Taking the stage I shared my own shock and fear upon diagnosis, my subsequent denial, and my early complications from that denial. The room quieted. I was they saw like them. I see the same landscape they see. I tramp through the same darkness trying to figure out half the time what's going on. I look for solace when diabetes rains down upon me or drains me out.
“When you’re so busy testing your blood sugar every day,” I said to my audience, “reading labels, counting carbs, and calculating everything, do you stop to think why you’re doing all this work? Isn’t it to see the grandkids grow up, start that second career, create the best vegetable garden in town, contribute something to the world, or have another million days with your spouse?”
Heads nodded and people leaned forward. They turned from silent witnesses into curious involved participants. Someone had brought humanity back into the room. Someone had understood and acknowledged this piece of living with diabetes where their heart resides, along with their struggle.
My predecessor, warm and personable though she was, didn’t have diabetes. That put her not just on the other side of the projector, but on the other side of our experience, where so many healthcare providers sit.
We patients, however, are the experts of our diabetes and we are in the daily business of chronic illness. We have life adjustments to make, and since we have precious little help to make them, we are reaching out to each other.
So here are my recommendations for a better tomorrow:
• Learn all you can
• Appreciate what you hold dear
• Pace your efforts
• Forgive your mistakes
• Keep the vision of your ‘best life’ ever-present
• Spend more time doing what you love. While we’re living with diabetes let’s
not short-change the “living” part.
• Consider yourself "more than" not "less than." We're all doing a second
After the program people crowded around to thank me, and they were smiling. Well, if anyone can leave a diabetes meeting with a smile then I figure I've done something right.