Hiking Maryland’s Sugarloaf Mountain once a month might not be what comes to mind when you think of a diabetes support group. Instead of a sterile hospital conference room, this group, called Testing Limits, meets at the base of a trail. Lacing up their hiking boots, members test their blood sugar and set off. Testing Limits is part of Insulindependence, a non-profit organization that hopes to educate and inspire people with diabetes to set personal fitness goals. Group captain Svati Narula says the conversations range from how long they’ve had diabetes to what someone ate for breakfast that morning. “But,” says Narula, “by no means do we talk about diabetes the whole time, the way a formal support group for people with diabetes might. We talk about the weather, the trail conditions, about our dogs, careers, and favorite sports.”
Narula was diagnosed with type 1 diabetes when she was nine years old and says, “Being able to exercise with people who understand that you might be preoccupied with calculating carbs and trying to prevent low blood sugars during a workout makes a big difference! And having this network of people means that whenever I have a question about diabetes and exercise, I have a bunch of trusted people with years of combined experience who can tell me what has worked for them, in addition to the advice of my doctor.”
Dr. Judith Long, MD, Associate Professor of Medicine at the University of Pennsylvania Perelman School of Medicine and Philadelphia VA Center for Health Equity Research and Promotion, says a lot can be achieved through peer support. According to Dr. Long, “Patients often have minimal contact with health care providers, and we have to figure out how to support healthy behaviors on a day to day basis. Improving blood sugar management is about more than education. People often know what they need to do to be in good control but have a hard time doing it.”
The lead author of Peer Mentoring and Financial Incentives to Improve Glucose Control in African American Veterans, Long and her colleagues found a ‘culture of camaraderie’ among patients in the recent six-month intervention of people with poorly controlled type 2 diabetes. The study found that peer mentors had a statistically significant effect on improvement of glucose control, with A1C levels dropping by over 1% in the peer mentor group over the six-month period. Dr. Long says, “I think the success of this program was because the closely matched mentors could relate to the mentees’ struggles. In fact, mentors were chosen because they had struggled with a high A1C at one time.” Continues Dr. Long, “Research has found that the mentor often gets more out of the experience than the mentee.”
Participant Glenn Cuff said that, when he was first diagnosed with type 2 diabetes, “My primary care physician was really mad because I was in such bad shape. Helping to get healthy was a team effort with my doctor, trial and error with exercise, diet and different medications.” Cuff used this experience to empathize with his mentees, and told them to call whenever they needed. “If they were at a family party and there was a peach pie on the table and they wanted to have it, they could call me. I’d tell them to have just a small slice of pie because when a person has been eating like that for years, you can’t cut them off cold turkey,” he said.
As an A1C Champion for five years, author, and diabetes advocate Riva Greenberg agrees on the value of peer mentors. Greenberg travels monthly to speak at health fairs and support groups about living life with diabetes. At an event in Spokane, Washington, a participant came up to Greenberg after her presentation to ask for advice. “She had lost 70 pounds and knew how important it was to keep the weight off, because she’d seen family members struggle with weight and poor blood sugar control. As she was telling me her story, she began to cry because she was scared that she would backtrack.” Greenberg told her to focus on her strengths and successes. “We have to figure out how to help patients make behavioral changes that will stick,” she says. “Traveling and speaking to groups of people with diabetes” says Greenberg, “has shown me that an important piece of successful, long-term diabetes care is ongoing support.”
Other innovative programs aim to support people with diabetes at the community level. South Eastern African American Center of Excellence in the Elimination of Disparities in Diabetes (REACH U.S. SEA-CEED) is a coalition of individuals and organizations dedicated to reducing new cases of diabetes in the African American communities throughout the Southeast. The Coalition offers diabetes education to help individuals develop skills to better manage their blood sugar, training for volunteers who want to help reduce diabetes in their communities, and diabetes resources, information, and referral services.
Sonya Smalls, Administrative and Legacy Projects Coordinator of REACH U.S. SEA-CEED, says, “In the past, we’ve used formal methods of teaching such as diabetes self-management classes, which were taught at local clinics, as well as informal methods such as small community or organization classes. We’re in the preliminary stages of evaluating which methods work better, but our studies thus far have shown that African-Americans respond more to informal methods that include support from their family, church, and friends.”
As these groups can attest, so much support for living with diabetes is taking place outside of hospital walls. Whether it means strapping on a pair of hiking boots, participating in a health fair, or finding a seat at the local church, mentors and mentees are coming together and finding new ways to try to live well with diabetes.
Amy Stockwell Mercer is a freelance writer with type 1 diabetes living in Charleston, SC. She blogs at re-Defining Diabetes and her work can be found in a variety of publications including Charleston Magazine, The City Paper, Diabetes Health, and Literary Mama. Mercer is a paid contributor for the The DX. All opinions contained in this article reflect those of the contributor (and interviewees), and not of Sanofi US, its employees, agencies or affiliates.
© 2013 The DX: The Diabetes Experience