Mila Buckley is a positive, vivacious and energetic woman who grew up in a home with several family members who lived with diabetes. She recalled that her mother and grandmother took multiple daily injections of insulin, but she doesn’t remember either of them talking about their diabetes management or how it affected their lives. It was simply never discussed or acknowledged.
At 26 years old, Buckley experienced debilitating exhaustion, frequent urination and unquenchable thirst. Her husband was concerned about the recent changes in her mood and decreased activity level and encouraged her to visit her doctor. Extensive blood work revealed that her hemoglobin A1C and blood glucose levels were very high, and she was subsequently diagnosed with diabetes. While the diagnosis was upsetting, the news was made worse when her trusted healthcare professional told her that the delayed diagnosis “was her fault” as she should have known the signs and symptoms and taken better care of herself. In truth, Buckley had been eating well and exercising, and these comments left her feeling overwhelmed, unsupported, judged and guilty. She felt alone and longed for support from others who had a similar lived experience.
According to Michelle Litchman, PhD, FNP-BC, researcher and nurse practitioner at the University of Utah College of Nursing, “Peer support is defined as support from a person who has knowledge from their own experiences with diabetes. This support can include people living with diabetes as well as a person affected by diabetes (e.g., an immediate family member or caregiver).” Peer support can be found in local support groups (hospitals, clinics or meetups), online groups or forums, social media platforms, apps, phone or other forms of telecommunication. According to Dr. Litchman, “online spaces can provide continuity of support, no matter where you live. As long as you have internet, you can stay connected to a community that understands what you are going through.”
The diabetes online community, or #DOC, has been a tremendous source of support for Cherise Shockley, who is the community manager for the diaTribe Foundation. Shockley was diagnosed with latent autoimmune diabetes in adults (LADA) in 2004. Following her diagnosis, she longed for “real-life” information about living with diabetes, which was different than the information provided by her healthcare team. At the time, she didn’t know anyone else who had diabetes, and after searching online, she stumbled upon TuDiabetes, which had options for people with type 1 and type 2 diabetes and a community for people with LADA. Shockley began to read diabetes blogs and immediately related to the day-to-day reality shared by others living with the condition. According to Shockley, “We need to share our experiences and expertise with the diabetes community so the world can see, share and learn.” In 2009, she started the #DSMA (Diabetes Social Media Advocacy) chat on Twitter, which continues to be a haven for people with diabetes across the globe.
During the year following her diagnosis, Buckley yearned to learn from others who lived with diabetes. After searching the hashtag #diabetes on Twitter, she found the #DSMA chat that had been started a few years earlier. At first, she chose to lurk in the conversation to observe how people talked to each other. She concluded that #DSMA was a safe and inviting space. “When I felt comfortable, I chimed in and no longer felt ashamed. I longed to be a part of a community, and had a strong need to connect with other people,” Buckley says. “Even though my husband was extremely supportive, I felt as if he didn’t really understand what I was going through. Having a peer support community and people who know what life is like with diabetes helped me feel positive and less frustrated. The online support community gave me the courage to change doctors and collaborate with a fabulous clinician who listened to me and valued my goals and needs. She asked me if I was part of a peer support community, which was amazing to hear from a healthcare professional.”
DiabetesSisters PODS (Part of DiabetesSisters) Meetup programs, an in-person peer support offering, reach thousands of people each year. These programs are facilitated by women living with diabetes, and participants can learn to thrive from one another’s experiences. DiabetesSisters offers similar programs online for those who do not have access to local meetups. These groups provide women with an outlet to share, engage, learn and find support and inspiration.
According to Anna Norton, the CEO of DiabetesSisters, who has lived with diabetes for 26 years, “At DiabetesSisters we pride ourselves on inclusivity. Our focus is on all women living with diabetes and ways we can come together, share our lived experiences, and learn from one another. We are welcoming and offer no judgment. Peer support systems are necessary not only for those of us living with diabetes but for our extended networks, including family and friends as well. We have hosted conferences with tracks designed specifically for spouses and partners, which have been met with great appreciation.”
Several years ago, Chris Aldred, who blogs under the name “The Grumpy Pumper,” attended a sports medicine conference run by people living with type 1 diabetes. Aldred shared that he “learned more in the first hour of the conference from people living with type 1 diabetes than he was taught” in the first 15 years since his diagnosis. He explained that spending time with people who “just get it” was empowering. Several of the attendees suggested he join Twitter so they could all keep in touch, and that’s where he stumbled onto the diabetes online community.
Aldred became sensitive to the stigma around talking about diabetes complications and began using the hashtag #talkaboutcomplications. His action opened up a discussion on complications among people living with diabetes across the globe. These dialogues help to reduce the blame that people with diabetes feel and offer compassion for those struggling with complications related to the condition.
Typically, the amount of time a person with diabetes spends with a health professional is limited to a few hours per year. Therefore, the education shared during medical or educational sessions may not include the nuances of day-to-day life with diabetes. For example, a diabetes care and education specialist (DCES; formerly certified diabetes educators, or CDEs) may discuss how to carb count for lunch at your favorite sushi restaurant, but probably will not address the possibility of going for a spur-of-the-moment run after lunch. These types of situations (happening in real-time) may not be explored during a routine session or visit. Asking questions in the moment of your peers, who have the experience and relatable expertise, can be extremely helpful. Additionally, many people may not learn from their healthcare provider about the variety of treatment options available, including different medical devices, insulins and other medications. People with type 2 diabetes are often surprised to learn about the variety of oral medications available, a topic often discussed in online forums. Discussions within online peer support communities can help people around the world understand and share options for treatment.
When joining an online community, remember that you are using a public forum. Whatever platform you decide to use, in most instances, anyone with internet access may be able to see your post. While you can create a “handle,” or alias, other participants (or administrators of the platform) may still be able to identify you. Be cautious about sharing health information, as that could be shared without your permission. Always be prudent about sharing sensitive health data.
According to Renza Scibilia, an Australian diabetes patient advocate “not everyone wants to be out, loud and proud about their diabetes, or participate actively in online or even face-to-face discussions. Some people feel uncomfortable about attending a support group. Online communities offer people the opportunity to hear what others are doing and how they are managing and living day-to-day with diabetes by just following along. If they choose to contribute, they can. But if they would prefer to just stay in the background, they can do that too. This is really important for some people who need support, but don’t really feel easy being part of the conversation.” Scibilia is a well-known blogger at https://diabetogenic.wordpress.com who writes about everyday life with diabetes. “I write because I want to connect with people,” she says. “There is stigma attached to diabetes; add on other issues, and it can seem like an insurmountable concern. Opening dialogue so people feel comfortable is a wonderful benefit of blogging.”
Healthcare professionals (HCPs) such as Litchman can be instrumental in maintaining peer support communities. According to Litchman, “online communities are not the same as a Google search for diabetes, which can include bogus cures, or rogue sale pitches to manage diabetes. Peer support online communities are comprised of people who are not trying to sell you anything. Our research has found that online diabetes peer support communities are self-policing content to weed out inaccurate information. On an individual level, people are engaging in a vetting process to improve safety.”
HCPs can suggest peer support communities to people with diabetes as a resource and to fill in gaps between visits. Scibilia suggests, “HCPs can talk with PWD [people with diabetes] about peer support and be able to direct them.” Additionally, HCPs can be part of peer support communities and may benefit from guidance from or collaboration with PWD when it comes to setting the agenda for the group’s discussion.
Scibilia also suggests thinking out of the box. “When I was pregnant with my daughter, I attended a diabetes and pregnancy clinic, held every Wednesday morning at a local tertiary hospital. After my first few visits, I realized that I saw the same women in the waiting room each time I was there. This became an informal support group of sorts, as we caught up, chatted about how we were doing since we’d last seen each other, reported on the latest glamourous aspects of pregnancy (skin tags, anyone?) and shared tips and tricks we’d learnt about coping with things such as morning sickness or discomfort sleeping. HCPs can facilitate these sorts of informal support opportunities by discussing it with people using their service and providing an area where people can sit and talk comfortably.”
If a healthcare professional lurks or joins in a chat, it’s important to remember not to provide medical advice or monopolize the conversation. People with the lived experience who participate are in a safe space and must feel as though they are in a supportive atmosphere. HCPs can contribute by being supportive of what is being shared, “liking” posts, and providing empathy and understanding. They can also create in-person meetups or shared medical appointments or support local groups or meetups such as the Diabetes Mixer (an educational and social event for people with diabetes).
Language is a critical component when speaking about diabetes. In peer support groups, at medical conferences and during discussions with members of the healthcare team, people must remember the language that is used matters. According to Scibilia, “The Language Matters movement (which is evident online) is not about tone, political correctness or policing the words used by people with diabetes. However, there is a place or discussion about the words used, especially if someone is using negative language when speaking about diabetes.” Using judgmental language may perpetuate stigma around diabetes.
When Buckley was told she should have “known better” and referred to herself as a “bad diabetic,” it was probably because she was conditioned to see herself that way. Once she received support from a peer support community, she felt respected, empowered and motivated. In addition to the advice, information and support she continues to receive from the diabetes online community, she is living her best life and feeling great about her future. Buckley continues to write her own blog, The Hangry Woman, in the hopes of inspiring and connecting with others who need support.
EsTuDiabetes.org (in Spanish)
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