Fight to control diabetes can put patients, families and doctors at odds

In this corner: a person with diabetes who faces a list of diet, exercise, medication and testing instructions that must be carried out every single day for the rest of his life.

In the other corner: the doctor who hears the patient insisting he's doing all he can — yet sees test results that seem to tell a very different story.

Clinical psychologist William Polonsky says one of the less-explored complications of diabetes is the doctor-patient relationship. Frustrated patients who feel their hard work isn't paying off may change doctors repeatedly. Doctors who think their orders are going unheeded have been known to drop patients.

To illuminate the issue, Polonsky will help both sides air their grievances at Saturday's Taking Control of Your Diabetes Conference and Health Fair in Tampa.

Polonsky, an associate clinical professor at the University of California at San Diego and CEO of the Diabetes Behavioral Institute, has done this many times.

"We put (patients, doctors and nurses) on opposite sides of the room and I ask them to tell me what really annoys you about each other. We write it down on a flip chart and everyone is pretty upset and the temperature in the room really rises, but we bring everyone together in the end,'' he said.

"It gets pretty heated. But it's fun and it turns out well."

Polonsky spoke with the Times last week from his home base in San Diego about the emotional toll of diabetes on patients, health care professionals and families.

Why are the doctor-patient dynamics so challenging with diabetes?

When I do presentations, patients regularly say they feel their doctor isn't on their side, especially with Type 2 (diabetes), which is associated with obesity. There's a sense that you did this to yourself. Think about it. It's one of the few conditions left where we feel it's still okay to blame people for getting it.

What are the secrets of doctors who are the best at this?

The physicians who are most successful in helping patients have found a way to make sure they are both on the same side. The doctor understands where the patient is coming from and avoids "blaming and shaming" to induce change.

What does it take to live successfully with diabetes?

No one gave that question much thought until recently. A lot of people do well with diabetes probably because they figure out a way to make peace with this disease.

How do they get there?

Some of the ingredients for success: They must have a realistic sense of hope. We know that with good care and good effort, we can help most people live long and healthy lives and avoid the awful complications of diabetes. People who manage it well also have people in their lives who care about and support them: a spouse, partner, friend, co-worker, family members. That's a real key. So is feeling like you have a physician who is on your side.

What is the emotional toll of getting this diagnosis?

The day one learns one has diabetes it's as if the universe gave you a new job and there's no pay, there's no vacation and you can't quit. That can be very frustrating.

Diabetics are at high risk for depression, eating disorders, heart disease and other scary complications, like neuropathy in your feet and limb loss. So, you're trying to avoid long-term problems with not much immediate payoff.

Patients feel overwhelmed, frightened, angry, guilty. A lot of people struggle because it's a tough disease, not because they're bad or dumb or lazy. Diabetes is not a disease for sissies.

What about people who say that no matter how much they do right, their blood sugar numbers don't improve?

Some people get too focused on blood sugar numbers. There is chaos in the system; high numbers are sometimes going to happen. How are your other numbers? Blood pressure, cholesterol, A1C? Knowing those can help you see progress.

Also, you are not a failure if the doctor says we'll have to increase your dose of a medication. Sometimes that's the nature of diabetes. It can get harder to handle and require more medication.

Do you think it's worse for younger patients?

I think there may be more emotional issues with Type 1 (in which the pancreas stops making insulin) because it is diagnosed earlier in life and tends to become more a part of your identity. The kids just want to fit in and don't want to be weird or different.

What about the parents of young diabetics?

No one is more stressed out and guilty than parents. The ones with the most trouble are the parents who care and it's rare that anyone takes into account their distress. They feel it's their fault, they passed it along in their genes. They're in a terrible bind, battling the disease and very often their kids.

Irene Maher can be reached at imaher@sptimes.com.

Taking Control of Your Diabetes

The conference and health fair for patients, caregivers and medical professionals is Saturday from 9 a.m. to 5 p.m. at the Tampa Convention Center. On-site registration is $30 per person, which includes lunch, snacks and workshop materials. Among the presenters: Nicole Johnson, a Type 1 diabetic, former Miss America and now executive director of the University of South Florida's Bringing Science Home project; Dr. Denise Edwards, director of USF's Healthy Weight Clinic; former Biggest Loser trainer Kim Lyons; and entertainer Ben Vereen, who has had Type 2 diabetes for years. Go to tcoyd.org for more information, or call toll-free 1-800-998-2693.

Fight to control diabetes can put patients, families and doctors at odds 09/28/11 [Last modified: Wednesday, September 28, 2011 6:49pm]

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