July 08, 2021 Building a network for youth with type 1 diabetes

One of the main topics of conversation that came up when a group of teens and 20-somethings with type 1 diabetes got together was the sense of isolation they feel because of their disease, and how important it is to them to have a community to help overcome that isolation. They connected in 2017 to help plan the Virtual Peer Network (VPN), which was originally supported by Diabetes Canada and the Canadian Institutes of Health Research (CIHR). “When we all took out our blood sugar things at the same time to test and give ourselves insulin, it was great. I’ve never been around as many type 1s in one setting,” says Michael Wright, 25, a member of VPN.

The support group allows youth and young adults with type 1 diabetes (ages 14 to 24) to connect regularly with each other via the Internet and social media. For Michael and others who often felt isolated or alone in dealing with their diabetes, creating and being part of this online community as a way to overcome those feelings is a dream come true.

Making space for support

For Dr. Kaberi Dasgupta, a professor of medicine at McGill University in Montreal, whose Diabetes Canada-funded research on stigma and type 1 diabetes led to the development of VPN (which she co-leads with Anne-Sophie Brazeau, assistant professor of nutrition at McGill University), that sense of belonging is essential. Her research shows that young people living with type 1 diabetes often lack support and guidance from people their own age—something that is critical in breaking down barriers and helping them deal with the stigmas about the disease.

“Type 1 diabetes requires a lot of focus and dedication. It involves blood testing, constant attentiveness to eating and physical activity to avoid high and low blood sugars, lots of medical appointments, symptoms of low sugars that are visible to others—these are major challenges,” says Dr. Dasgupta. “Because type 1 diabetes is less common than type 2 diabetes, many people with type 1 diabetes don't know anyone else with the same condition. A peer network lets people interact with others who share the same challenges but [who] also have found ways of living well with type 1 diabetes.”

It can be overwhelming for young people as they transition to adulthood and have to take on more responsibility for managing their own diabetes care. Unfortunately, if they do not make that transition well and as a result have poor diabetes self-management, they may face future complications—something the group hopes to help people with type 1 diabetes avoid. Part of the network’s outreach includes educational Facebook Live sessions with health professionals, says project coordinator Debbie Chan; as well, if members post questions that would best be answered by a health professional (such as insurance coverage for pumps in a particular province), she sends that question to the appropriate professional, and then posts the answer on the network’s Facebook page. As well, they are working on a website that will also provide useful information. But the network is not just about the serious stuff: Posts can be anything, “like the thought of the day… or just a meme [an idea or word, often humorous, that is spread to others over the Internet using an image, video, or text] to keep things fun,” says Debbie.

The network currently has 230 members, and 12 peer leaders, four of whom are bilingual so the group can reach both French- and English-speaking youth. Alexandra Kellington, one of the leaders, has seen others living with the disease struggle and understands the feelings of isolation it can bring. “I think the power to let them know they aren’t alone and that they can achieve anything they want in life, I think that’s really inspiring,” says the 23-year old, who hopes to become a pediatric endocrinologist.

In their own words

Here is what peer leaders in the VPN community had to say about living with type 1 diabetes.

“For me, diabetes is a full-time job I never asked for. It can be mentally draining some days but I know it has made me stronger and more resilient.”

“Diabetes is, above all, lonely.

Doing the job of an internal organ is hard work, and invisible work, and the people around us often don’t get it. ‘You just have to poke your finger, right?’ No, it’s so much more than that, but you only know if you know.

That’s why VPN is so important—to have a community to turn to at any hour, with no intense commitment, just knowing there are people there who get it. Diabetes is doable, but only with community.”

“Living with type 1 diabetes is overwhelming and frustrating. It is constant work and oftentimes leaves us not knowing where we went wrong. However, T1D has also allowed me to meet amazing people who can relate to me, and has opened my eyes to research and trying to find answers to help people live with T1D.”

Young people between the ages of 14 to 24 who live with type 1 diabetes can register at Virtual Peer Network (VPN) or email, and get support from others living with the disease who are part of the network. Want to hear more about the VPN? Peer leader Melinda Prevost shares her story on the Diabetes Canada Podcast.

Did you know?

2021 marks the 100th anniversary of the discovery of insulin. Today, more Canadians have diabetes than ever before. Diabetes or prediabetes affects 1 in 3 Canadians. One in 2 young adults will develop diabetes in their remaining lifetime. We can’t wait another 100 years to End Diabetes. #LetsEndDiabetes Visit 100 Years of Insulin to learn more, including how you can support those living with or at risk for the disease.

You can join free virtual Diabetes Canada Peer Connect events for networking and education with others living with diabetes (type 1 or 2), their families, friends and caregivers. Sessions are held on Zoom and include speakers on hot topics, a panel of experts and breakout discussions. Visit Local Programs and Events (scroll down to Community Events for your region) to learn more and sign up today!

This article appeared in Diabetes Dialogue, Spring 2018.