At our women’s health clinic at Massachusetts General Hospital, we run groups for women with diabetes that is out of control. It’s a new style we developed — not just a nurse lecturing at patients but a medical doctor and a psychologist and a nurse practitioner working together to engage and empower the women to deal with their diabetes. New approaches to diabetes are sorely needed to deal with this growing epidemic, which now affects almost 26 million people in the US. The incidence is rising in the young, especially in the black and Hispanic communities, and is linked to childhood obesity.
On stage in Sugar, now playing at ArtsEmerson, Robbie McCauley weaves a tale of her life, richly laden with juicy tales of food, family, fame, and fun. But she also serves up the bitter with the sweet: bare roasted bones, refined by fire, that make plain the fear, failure, and fatigue that come with being a black woman with type 1 diabetes. She gives us a lot to chew on, holding the audience rapt for 90 minutes, as she glides, stumbles, sings, moans, dances, and shoots up insulin on stage. There are moments of fleeting beauty, as when she struggles to carry a load of sugar cane on her back across the stage. After she stumbles, her piano accompanist comes onstage, tenderly lifts the bundle onto her back, and helps her to shoulder the load so she can make her way.McCauley bears her burden with grace.
As a doctor, I appraise her with a clinical eye. A tall, slender, lovely woman, she must be in her seventies. Despite a history of type 1 diabetes, rheumatoid arthritis, and bouts of heavy drinking in the past, she looks good! (A silent cheer for her resilience.)
As a doctor, I also learn a lot. McCauley talks about the 3 Ds of diabetes: depression, denial, and drink. Some of her insights are familiar to me. Did you know that diabetes and depression are closely linked – and the association goes in both directions? That is, if you have diabetes you are more likely to develop depression; and also, perhaps more surprising, if you have depression you are more likely to develop diabetes.
Everybody acknowledges now that diabetes is a social disease, and that it has become epidemic. Funny how some things are obvious, but you can only get traction on dealing with them after they get a name. As McCauley points out, you can now read articles in the New England Journal of Medicine that document that there are disparities in health care delivery. “There are disparities! Well, duh!” she shrieks. Maybe the fact that the health care world has the D word will help us grapple with what’s been there all along: racism; sexism; capitalism divorced from social responsibility.
Although it’s easy to get discouraged about the magnitude of the diabetes problem, there is also room for hope. Unlike some other social diseases, diabetes is an equal opportunity affliction; it can get you if you are rich or poor, white or black, male or female.
From my perspective squarely in the belly of the beast, I can assure you that diabetes really does engage the medical community, unlike some other socially determined diseases. The biology of diabetes is fascinating, and we know a lot about it. Thanks to the boom years of Big Pharma, there are tons of new diabetes drugs (though the best treatments are often the old, inexpensive ones, and an even better “treatment” is prevention). There are lots of new gadgets, too, such as insulin pens that make injections easier. Thanks to testing for hemoglobin A1c, which provides a measure of what average glucose levels have been over a several month period, we have a metric for diabetes control that’s cheap and readily available. That’s good, because doctors like to measure things. And diabetes is a multi-system disease, so there’s something for every medical specialty.
Much has changed since I graduated from medical school in 1980. We have a black president, and enough health policymakers chosen on merit rather than politics to make a start on a decent national health policy. We also have an economic crisis that has finally made everyone pay attention to how much health care costs and how little value we get for all that money. So now forces are better aligned to get doctors, patients, businesses, and communities together to figure out how to fight the diabetes epidemic.
We should listen to people like Robbie McCauley as we plan our strategy, because her play is itself part of an effective treatment plan. Get people together, as she does in her theater and as we do in our diabetes groups, and give them solid information, space to talk and learn from each other, a chance to cry and to laugh. Get underneath the denial that keeps people stuck. Give them a chance to move, to relax, to breathe. Show them how someone else has figured out how to live, and even to thrive, with diabetes.
Sugar is powerful medicine. I left the theater after this healthy dose of inspiration thinking, thank God Robbie McCauley survived to tell this story. I hope her play will be a shot in the arm for all of us who are struggling with diabetes and fighting to clean up the lousy diet and environment that are its root causes. Let’s go back to the table together, as we plot the next step in a strategy to end diabetes.
Karen Carlson, MD, is director of Women’s Health Associates at Massachusetts General Hospital and an associate professor of medicine at Harvard Medical School.