Welcome to our third blog post about developing a Canadian Roadmap for Bipolar Disorder Psychosocial Research and Care. Today I’m writing about the Roadmap project from the perspective of a peer researcher, someone who lives with bipolar disorder (BD) who’s a co-researcher on the project. During this study, we’ll be learning from people who have experience with BD in different ways – people who live with the condition, family members and loved ones, healthcare providers, mental health policy makers, and community organizations. In the coming months, I’m helping to co-facilitate the deliberative dialogue groups and will also contribute to analyzing, summarizing, and sharing our findings.
We’ve begun holding deliberative dialogue groups where we’re collectively mapping out the priorities of people with lived experience for the Roadmap. I’m excited to learn what comes out of the discussions: What areas of quality of life and psychosocial care are the most important to people who are affected by BD? Can we agree on the top priorities? Or if we can’t reach a consensus, what will be the key themes that emerge? And most importantly, how will we move our findings into an action plan that will improve care and quality of life?
For me, this is about learning and gaining work experience in areas that I am very interested in: mental health, community-based participatory research, patient engagement, and qualitative research. This is a paid career opportunity for me, not a volunteer job. And that’s how patient partnerships should be. At this point, I should also mention that I don’t actually think of myself as a patient in my role as a peer researcher. I consider myself and am treated as a partner, professional, and team member.
As someone with bipolar disorder, it’s been empowering to be in this role and to provide valuable contributions to this research. I’m only one voice amongst millions of people who are affected by BD. We need to hear from many different voices. At the same time, I must acknowledge that it’s challenging to be involved in work on a condition that has caused me so much pain. Talking about what it’s like to have bipolar disorder in Canada in a medical system that does not meet our needs can be hard. I draw strength from the larger message of hope and the change we’re working towards.
There are so many research studies about people with BD that focus on what’s wrong with us. CREST.BD is changing this paradigm by focusing on research that empowers and improves the lives of people with BD. I hope this is part of a larger trend. It’s only from listening to diverse groups of people who have experience with BD that we can even begin to learn what’s needed and develop a plan to improve health care, science, and society for people who live with BD, their loved ones, and supporters.