We need both information and support to deal with the diabetes demon we carry around with us every day. In the past 15 years the explosive growth of the Internet – and especially the HealthCentral web site – now give us as much information as we can handle.
The Internet is also pretty good in giving us support. But we still get the best support face to face.
This morning Bill Polonsky gave some of us a taste of the support that he provides to people with diabetes. As the guest speaker closing the two-day 2011 Roche Social Media Summit at the Hard Rock Hotel in San Diego, Bill spoke to 37 writers and bloggers about diabetes.
Bill is the founder and president of the Behavioral Diabetes Institute in San Diego. This is the only institution in the world focusing on the emotional aspects of diabetes.
He has a Ph.D. degree and is also a Certified Diabetes Educator. Bill also is Associate Clinical Professor in Psychiatry at the University of California, San Diego.
But I think of him mostly as the author of the classic book, Diabetes Burnout: What to Do When You Can’t Take it Anymore.
All of us listened carefully as he spoke to us for about an hour and a half. For me the high point of his talk came almost an hour into his presentation, which I recorded on my iPad 2 so I could extract this for you.
"We are big purveyors of what we call evidence-based hope," is how he started this part of his presentation. "There is so much gloom and doom around diabetes. How many of you were told something horrendous when you were diagnosed, like you are in big trouble?"
So many people talked at once that I can’t report their answers. But Bill continued:
"If you were diagnosed a long time ago, you were told that a cure is just around the corner, usually about five years, and depending on how long ago you were diagnosed, you are not going to live past the year of x. Then, they told you about all the terrible things that were going to happen to you."
He then related how years ago somebody came to see him and said, "Today is my 30th birthday." He was depressed because he was told that he wouldn’t live past the age of 30, and "I’m still here. What do I do now?"
Bill still remembers how taken aback he was. "Too many people hear things like that. So every program we do starts with this true-false question:
"Diabetes is the leading cause of blindness, non-traumatic amputations, and end-stage renal disease in America."
When he asked us how many people believe that is true, some of us agreed.
"Of course, it is false," he stated. "What’s true is that poor management causes those problems. Well managed diabetes is the leading cause of NOTHING."
We do have so much good news about diabetes to share. Yet we still see so much of this negativity.
A study a couple of years ago followed up the Diabetes Control and Complications Trial, which between 1983 and 1993 studied 1,441 people with type 1 diabetes. The follow-up study had long-term results from that study. They looked at 30 year outcomes.
"How many of you have heard about this?" he asked. Just a few of us raised our hands. The study that Bill talked about is called Epidemiology of Diabetes Interventions and Complications (EDIC).
"One of the things that they looked at was the percentage who had severe vision loss, what percentage had a kidney transplant or dialysis, what percent had an amputation. The actual numbers shocked everybody when the study was published.
"The percentage of people in the intensive arm of the study, those who had an average A1C of 7.1 after 30 years of diabetes, one percent had severe vision loss in one eye. Nobody was blind. One percent ended up on dialysis or had a kidney transplant, and one percent had had some kind of amputation, although most had nothing to do with diabetes. Those were NOT the kind of numbers we think about. So this is a brave new world.
"As cool as those numbers are, remember those people grew up with no A1C test, no blood glucose monitoring, no analog insulins. The odds are good that you will have a long, healthy life with diabetes."
Then, one of us, Cherise Shockley, who writes at Diabetes Social Media Advocacy, asked the right question.
"Why do they use the fear factor on us? Why do they use the negative to think that it will motivate us?"
"It’s true that health care professionals try to scare people all the time," Bill replied. "Scaring people is a really good way of getting someone’s attention. It is not a good way to promote a long-term behavior change. For the health care professionals it also makes them feel better to get that off their chest."
To me, diabetes has always been about control. But one of the participants in the Social Media Summit, Scott Strumello who writes at Scott’s Web Log, says he doesn’t use the term "control." It’s about "managing" diabetes, he says, and I may start thinking that way myself.
We can manage this demon. And when we do, we have nothing to fear.
The 2011 Roche Social Media Summit led up to the 71st Scientific Sessions of the American Diabetes Association, which started this afternoon here in San Diego. That’s the other reason why I travelled to San Diego.
For the next four days I will cover this huge meeting for HealthCentral. I expect to have a few things to report.
David Mendosa was a journalist who learned in 1994 that he had type 2 diabetes, which he wrote about exclusively. He died in May 2017 after a short illness unrelated to diabetes. He wrote thousands of diabetes articles, two books about it, created one of the first diabetes websites, and published a monthly newsletter, “Diabetes Update.” His very low-carbohydrate diet, A1C level of 5.3, and BMI of 19.8 kept his diabetes in remission without any drugs until his death.