Diabetes support groups are important connection points
Lesley Hoffman Goldenberg was particularly frustrated with her blood sugars one afternoon and decided she was tired of going it alone. She'd lived with type 1 diabetes since she was 12 years old, but never attended a support group until she discovered ACT 1 Diabetes in New York City. "The other Type I girls gave me creative tips for managing blood sugars, exercise, site changes, and doctor visits, and it just made things easier." Lesley adds that while she adores her doctor, there are issues she feels more comfortable discussing with the group. "In our meetings, NOTHING is off limits! We talk about all things serious, hilarious, disgusting, sexual, and uncomfortable. It's one of the only times I actually feel good about being a Type I Diabetic."
ACT1 Diabetes: a support group in New York
Katie Savin came up with the idea for ACT 1 in 2008 as a college student because she too was feeling frustrated and alone. She says, "That first night we had 12 attendees." The peer run, women only group meets at the Beth Israel Hospital in Manhattan for an hour twice a month. Most of the members are between 18-35 years old, and Katie says the constant monitoring in a positive and socially constructive way is what makes the group so successful. Another important aspect of the program's success is that it's run by women with diabetes. "People often stick their heads in the door and look at me skeptically when I sat at the head of the table, and ask if I was a nurse or a doctor. As soon as I said no, that I was a diabetic too, their shoulders instantly relaxed," she says. "It's a place people can go without feeling judged." She believes a variety of interventions are important to diabetes care, and that the support and advice shared between group members increases member's motivation to manage the ups and downs of diabetes.
What makes a good diabetes support group?
Support groups come in all shapes and sizes and finding the right group is an important part of the process. Dr. Katie Weinger, Assistant Professor of Psychology at Joslin says contact with other diabetics is key. Dr. Weinger has looked at different types of diabetes support groups and says the more similarities of attendees, the better. In her study, "Should Group Education Classes Be Separated by Type of Diabetes?" Weinger and colleagues looked at the importance of commonalities among patients in group settings, and found the benefits of group education were improved when participants could relate to each other's shared experiences.
How do I find a diabetes support group?
But what happens if you don't live in a big city like New York where you can find a group that fits your individual needs? How do you combat the feelings of isolation when you are the only person with diabetes in your small hometown? If you're a woman, you can sign up for "Sister Match," a matchmaking service of sorts that connects women with shared interests, activities and goals. Created by Diabetes Sister founder Brandy Barnes, Sister Match is similar to her PODS program.
PODS Meet-Ups. PODS Meet-ups are currently offered in 12 different cities, 7 states, & 2 countries. Kelli Turner, PODS coordinator says, "It's been so rewarding to see PODS grow from one city, one state to 7 states and even spread to other countries! I love volunteering my time to such an amazing program that allows me to reach so many women living with Diabetes, and to develop these meet ups so we can continue to grow. This program is truly allowing women with Diabetes a great opportunity to make a difference in each other's lives." Kelli agrees with Dr. Weinger's findings and says that commonalities are an important factor in the success of the PODS. "By nature, women typically provide each other with a safe and comfortable environment to share accomplishments as well as our biggest fears, and when you bring in diabetes as something we all have in common, each sister can take a breath of relief. I usually hear from newcomers that they felt re-energized to face their diabetes battle. Most woman say they no longer feel alone in their journey after attending a PODS! That sends chills through my entire body, I love that!"
All current PODS meet ups can be found on the website under the events tab at: www.diabetessisters.org.
Tudiabetes.org. Another option for women and men are sites such as tudiabetes.org with numerous groups and forums for people with diabetes ranging from insulin pumpers to diabetic scuba divers. There are groups for people with type 1, type 2, type 1.5 and gestational diabetes. Created by Manny Hernandez soon after he was diagnosed with diabetes in 2002, tudiabetes.org is all about the power of community. Manny says, "We at the Diabetes Hands Foundation believe that nobody with diabetes should ever feel alone. Since 2008, we've seen how the power to generate lasting change in our own lives and the lives of others is in our own hands.
Every day we encourage respectful and open exchange around the realities of our lives because we want to connect and energize the millions of people living with this condition. Rather than looking at the disease, Diabetes Hands Foundation seeks to understand the people living with diabetes and gives them the outlets to share ideas and experiences."
Don't try to go it alone. Living with illness can be frustrating, and if finding a support group will alleviate some of that stress, reach out and get connected.
For more information on these programs go here:
Interview with Lesley Hoffman Goldman
Interview with Katie Savin, Act 1 Diabetes
Interview with Kelli Close, DiabetesSisters.org
Interview with Dr. Katie Weinger, Assistant Professor of Psychology at Joslin
Interview with Manny Hernandez, TuDiabetes.org