Finding Your Diabetes Support Network
By Renza Scibilia
When you’re diagnosed with diabetes, your healthcare providers can’t answer all your questions. Meeting others with diabetes can be a great way to learn from experience. Diabetes advocate Renza Scibilia discusses her experiences finding social support at different stages throughout life.
There is something powerful about being part of a group of people sharing similar experiences. That is the foundation of peer support, and in diabetes, finding others who ‘get it’ can be life changing.
Peer support groups come in many different forms that work for almost anyone. And, in the last few decades, more and more peer support groups have moved online, making access much easier. But while there is growing evidence to show just how valuable peer support can be for people living with diabetes, including improving mental health outcomes, it can be a challenge to find the right community, or connect with those who are going through similar experiences.
A 2016 survey of over 2,300 Australian adults with diabetes at the Australia Centre for Behavioural Research in Diabetes showed that the most-often reported disadvantage of diabetes peer support was that discussions were not relevant to them.
When I was diagnosed with diabetes in 1998 at age 24, I didn’t know anyone else living with the condition. The only materials I could find seemed to have been written for older people and were focused on aspects of diabetes that weren’t really relevant to me. I was desperate to meet others who could help me make sense of being a young adult with diabetes.
Here in Australia, the ‘Reality Check’ forum was one of the first places I found others with diabetes I could relate to. Their stories and questions were similar to mine and focused on travel, how to manage diabetes on a big night out, and practical aspects of managing sex and diabetes. The discussions on Reality Check were different from what I’d seen in other places, where information seemed to come from healthcare professionals with little understanding that concerns about diabetes went beyond counting carbs and dosing insulin.
Melinda Seed has lived with diabetes for over 50 years and is a long-time activist in the Australia type 1 diabetes community. She stumbled across Reality Check back in the 1990s after typing ‘diabetes’ into a search engine.
“I came across a black background emblazoned with ‘Bored? Frustrated? Got type 1 diabetes? Me too!’ I could have kissed the computer!’ Seed recalled. “As I explored the site, I found real, young adults with type 1 diabetes who were just like me. Finally, here were people to confirm and validate my experience, hallelujah! The sheer joy of ending almost 30 years in the diabetes wilderness feeling inadequate and disempowered is indescribable.”
Reality Check was also an excellent advocacy resource, using peer networks to highlight relevant issues and rally the community to advocate for change. At the beginning of the 2000s, it was a huge community effort that started the movement to have insulin pump consumables subsidized for people with type 1 diabetes. Though the Reality Check forum is no longer active, its impact was lasting.
“I feel the community established through Reality Check helped change the discussion around diabetes,” Seed said. “It brought the voice of people with diabetes to the table and, as one of the very first internet communities for diabetes, paved the way for so much of the patient advocacy and activism we see having an impact today.”
Today, there are still pioneers in the diabetes community who create networks to support specific cohorts where there are gaps. Georgie Peters, a diabetes advocate from Melbourne, Australia, who has lived with type 1 diabetes for 12 years, was looking for a very specific type of peer support, and when she couldn’t find it, she built it. She started BodyPosiBetes, an online community that combines diabetes and body positivity, using the cheeky tagline “Just because your pancreas hates you doesn’t mean you have to hate yourself too.”
“I wanted support managing [my] diabetes in a space that wasn’t full of diet culture,” Peters said, noting that so many conversations about diabetes centered on weight loss. Diet culture involves the belief that weight and physical appearance are more important than physical and emotional well-being. For people with diabetes recovering from eating disorders, she said that finding a safe place is critical. She found that groups that claimed to be body positive often still were founded in diet culture.
“I could find people my age and in my city, but they weren’t necessarily ‘size inclusive’ and that was important to me,” Peters said, referring to the importance of accepting others regardless of their size or body type.
But peer support is not necessarily all positive. Peters said that sometimes there is an expectation that diabetes alone is enough of a reason for community connection when, in reality, there are a lot of personalities to navigate.
“It’s not just about having diabetes,” she said. “I wanted to create a space that people could use knowing that there won’t be any homophobia or racism. If you’re not straight, cis and white, the diabetes community can be a difficult space to navigate, because that is what we see mostly on diabetes social media.”
Feelings of isolation are commonly reported in diabetes, and many people can go for years without even knowing that peer support can be extremely helpful. Chris Aldred from the east coast of England spent his first 18 years with type 1 diabetes not involved with diabetes peer support or knowing others with the condition.
“There really wasn’t anything that I was aware of,” he said. “The only source of information was a quarterly diabetes charity magazine. I felt very isolated.”
That all changed in 2012 when Aldred attended a sports weekend with 50 other people with type 1 diabetes. “It was the first time I felt like I was in the majority!” he said. “No one asked stupid questions. Instead, we were sharing experiences.”
Since then, Aldred has developed a close-knit group of friends with diabetes across the world. “It wasn’t until I met others with diabetes that I realized how much I needed peer support, and how beneficial it is to my emotional wellbeing,” he said. “Not feeling like the only one is powerful.”
Peer support needs, just like diabetes management needs, change as we move through the different ages and stages of the condition. For instance, when I was first diagnosed, I was looking for ideas on how to manage glucose levels when out for dinner with friends; but a few years later, my questions were more about how diabetes might impact pregnancy.
These days, I’m less about what to expect when expecting a baby, and more about what to expect when expecting perimenopause. Once again, I went searching, hoping that I’d find a group of people who had walked this path recently, or were walking it right now. And I found it.
Dawn Adams has lived with diabetes for 29 years and is active in the Northern Ireland diabetes community, administering the @NIdoc Twitter account. She frequently shares articles and activities that are aimed at supporting people with diabetes looking for information about perimenopause and menopause. And she is an advocate for how others with diabetes can help at times when it seems that there is so little support and information readily available.
“Peer support provides a safe environment of easily accessible lived experience 24/7 where people with diabetes can ask questions that healthcare professionals don’t always have the answers to,” Adams said. “For many of us, menstruation, breastfeeding and menopause usually come with a standardized routine advice caveated with ‘Check glucose levels more frequently and adjust insulin doses accordingly.’”
However, she added, peer support also goes beyond just sharing experiences.
“Peer conversations help to break the stigmas we have unconsciously maintained about mental health issues,” Adams said. “Diabetes is difficult…but none of us are alone. Peer groups equip us to find others, and that benefits our mental health.”
