When Virtue Bajurny was diagnosed with type 1 diabetes a few months before her sixteenth birthday, she was the only young person in the diabetes program at the hospital in Etobicoke where she was treated. That meant taking her diabetes education classes amongst older adults and seniors, all of whom were living with type 2 diabetes. It was an experience that left an impression and laid the foundation for how she thinks about diabetes as a whole.
“They were all so nice to me. They were like, ‘Poor you, you’re so young and you have to deal with this,’” she says. “So, I never really understood that thing where you’re in this camp or this camp [Type 1 diabetes or Type 2 diabetes] because everyone was so supportive and nice, it didn’t really make sense to me.”
That feeling of wanting more diversity and support for all people with diabetes, regardless of type, was one of the elements that drew her to working with Diabetes Action Canada when researcher Dr. Holly Witteman invited her to participate as a Patient Partner.
“I like that there’s type 2 and type 1 and a variety of people’s experiences,” Bajurny says. “Sometimes it feel like there’s a little bit of type 1 vs type 2. If you meet people and talk to them, it breaks some of that down a little bit.”
Now a social worker and therapist who has experience helping people with diabetes manage their mental health, Bajurny also felt she brought an important voice to the organization. During her graduate work, she had looked at research on diabetes and online peer support and been shocked by the gaps she saw in terms of knowledge and understanding. “I just remember reading research where I felt like it was really obvious they didn’t talk to people or have an advisor or somebody that had diabetes on the research side of it,” she says.
She remembers being frustrated reading the reasons the researchers thought they were getting a result and thinking, “No, you’re wrong.” She was also put off by the language used that labeled participants as “diabetics” and not people with diabetes. “They just felt biased in a certain way or not fully informed, like they didn’t have the full picture,” she says. “It felt important to have someone with lived experience on board so they could fill in the full picture.”
As a member of the Patient Circle and the committee working on Sex and Gender related research, Bajurny has enjoyed the opportunity to meet others from a range of diabetes backgrounds and being able to add her lived experience as a person with type 1 diabetes, as well as her professional experience as a social worker to the research process.
For Witteman, a researcher who also lives with type 1 diabetes, Bajurny’s involvement made sense because of her work in the online diabetes community and her ability to offer thoughtful reflections on the work. She also knows the importance of the patient voice in research.
“As a researcher, I’ve always worked with people who belong to the community I am aiming to serve with my research. It’s just how you do things, because if you don’t involve people who will ultimately use the research, you risk going in the wrong direction or missing opportunities,” Witteman says. “As a person living with diabetes who also happens to be a scientist, I see missed opportunities in other diabetes research where, had the researchers partnered with patients, they would have saved themselves a lot of hassle.”
Moving forward, Bajurny is hopeful there will be opportunities to add her experience to projects on mental health and quality of life in diabetes. She has seen the investment made in supporting the mental health of those with cancer through her professional work and knows there is value in pursuing this in the diabetes field. As the Diabetes Action Canada work continues to grow and develop, she would like the chance to be part of expanding research in this area.
Would you like to become a Patient Partner? Learn how!
Meet our Patient Partners.
Written by: Krista Lamb