Peer support and education to better thrive with diabetes
A.Norton, N.Bereolos, C.M.Aprigliano

While online communities have been a source of support for people living with diabetes, in-person gatherings for people living with diabetes can offer pyscho-social support, practical assistance, resources, and education from peers and professionals in a safe, nonjudgement zone. The Diabetes UnConference and Weekend for Women Conference offer an environment of facilitated peer support from adults of all ages living with all kinds of diabetes, along with formal presentations by professionals including endocrinology, psychology, cardiology, and nutrition which provide the foundation for the knowledge shared. 

Since 2010, DiabetesSisters has hosted the Weekend for Women Conference, serving over 1,000 people. The two-day conference has converged in various cities of the United States to bring more education, support and empowerment to women as they walk their journey with diabetes. In 2015, The Diabetes Collective, Inc., hosted its first Diabetes UnConference, a weekend event where attendees provide diabetes topics they wish to discuss in an unscripted environment. The conference has an alumni base of over 300 people. Scheduled for October 2017, these two organizations will co-locate their programs to bring more people living with diabetes (and their supporters) to experience another weekend of support and education.

Designed with respect and trust, both events promote inclusion of all kinds of diabetes, stressing the similarities and concerns far outweigh the differences. Discussions include diabetes communication, nutrition and food challenges, and fears. Conversations about stigma/language are widely requested and encouraged, as well as issues centered around intimacy in both the mental and physical arenas. Additionally, professionals are invited to speak on specific topics such as diabetes and heart health, anxiety, and learning to use the glycemic index to better understand how food works as it is digested. Other professionals help guide conversations to how to manage the disease with advanced duration diabetes or comorbidities.

Post-event surveys have shown that similar concerns affect people living with diabetes regardless of age, socio-economic status, geographic location and time of diabetes diagnosis. Attendees have stressed the importance of learning from one another through their experiences and validating those conversations by learning from professionals. This validation produces empowered people with diabetes, ready to ask pertinent questions about their care and opens their curiosity about management and treatment.

Upon conclusion of these events, attendees have said they feel “empowered” and “inspired.” Some have committed to seeking out different healthcare providers, while others have changed their perspective about using technology by incorporating insulin pumps and continuous glucose monitors into their treatment plans. Most have departed these events with a new sense of community, a new tribe to consider family, and support to help them as they move forward in their journey. Others have created regional gatherings/monthly meetup groups to continue these conversations. And others have embraced “accountability” and “check in” partners to provide encouragement via text, email and/or social media.
Branching out to partners/caregivers/those who support people with diabetes/type 3s, these events have provided much needed conversations to many who have never shared their feelings or concerns with another person. Similar to the person living with diabetes, the partner may oftentimes feel fear and overwhelmed in living with the disease. These individuals also lack peer support, and both the Weekend for Women and Diabetes UnConference offer a track to better prepare partners on what diabetes is (and isn’t), how to best communicate, and how to handle emergencies should they come up unexpectedly. Like the sessions for people living with diabetes, these sessions are offered in a safe space, with no judgement. 

Participants have shared common responses: “I thought I was the only one who worried about my partner,” “I want to help my partner, but I don’t know how,” and “I feel better equipped to inject glucagon should there be an emergency.”

For healthcare providers, it can be challenging to cover the many facets of living with diabetes in an office visit, especially regarding the emotional support many need and seek. Events such as these allow for better living with diabetes in-between healthcare visits and empower patients to learn more about their treatment plans and be a part of their ongoing care.