By Codie Primeau
Chronic pain is something many of us learn to live with long before we have the language or support to talk about it. It is often invisible, yet it becomes a quiet companion that follows us day-to-day. It can shape how we move through the world, how we show up for others, and how we understand our own bodies. Its impacts can feel heavy, exhausting, and isolating.
For me, chronic pain has been part of my life since childhood. I first noticed it as a kid playing hockey. From the outside, I looked like an energetic, athletic kid with no visible signs of anything being wrong. What people could not see was the low back pain that began during practices and games. At first it felt like a small “twinge” that came and went, but it slowly grew into a deeper ache that followed me into daily life.
Those years were also when I was trying to understand my queerness in a small city where being gay was seldom talked about. Kids bullied me about it long before I had the confidence to name it myself. Learning to hide parts of who I was meant I also learned to hide pain. When I sought care, I was often told that because I was young and active, it was probably nothing serious. Even when providers meant well, dismissals stayed with me and made me question my own experience, wondering if my pain was “real”.
By adolescence and adulthood, it had been with me long enough that I stopped expecting it to disappear. When pelvic pain entered the picture, silence began to feel easier than speaking up. Pelvic pain can be difficult for anyone to talk about, but for me it brought added anxiety about what questions might follow. I worried about questions I was not ready to answer while I was still coming to terms with who I was. Past experiences of being brushed off made the idea of being vulnerable even more difficult.
When you are not sure if a provider sees you for who you are, accessing affirming care becomes a calculation. A friend once shared the term Safety Math with me, and it captured how I often weighed what to share, what to hold back, and how to protect myself before any encounter. Many people from 2S/LGBTQIA+ communities know this feeling. Avoiding care can feel safer in the moment, but waiting often allows symptoms to grow and become harder to manage.
My family’s experiences have also shaped my path. My mom lives with fibromyalgia, and watching how deeply it affected her daily life showed me how misunderstood chronic pain can be. I saw how often she was dismissed, invalidated or moved between providers without answers. Her inspiring strength in navigating a system not designed with people like her in mind influenced me deeply and guided my decision to become a physiotherapist and researcher focused on supporting people whose pain is often overlooked.
These experiences reflect broader systems that do not consistently provide affirming care to all people. When you are unsure whether a provider will see you with respect, it becomes much harder to talk openly about your body or your pain. The moments when care feels safe, compassionate, and welcoming show what is possible and what we should be striving for.
For many people from 2S/LGBTQIA+ communities, the experience of chronic pain is shaped not only by our bodies but also by our identities, relationships, and environments. My experience is only one pathway through the system. As a white, cis man with stable employment and supportive networks, I move through care with forms of privilege that many others do not have. Chronic pain often intersects with racism, transphobia, housing insecurity, alongside other social and structural factors that can make accessing care far more difficult and highlight the importance of approaches rooted in community strengths.
Reflecting on these realities also makes me think about my own experiences differently. I have often wondered how much of what I was going through as a young queer person, trying to protect parts of who I was, may have shaped how I managed my pain. We still have few answers about why 2S/LGBTQIA+ communities experience higher rates of chronic pain because these experiences have rarely been explored in research. What I do know is that feeling safe enough to speak openly changes how care unfolds. It was not until I found a nurse practitioner, a massage therapist, and a physiotherapist who were all queer that I finally felt I could be myself in health care settings. It should not have to be this way, and it highlights how many questions remain about chronic pain, safety in care, whose pain is taken seriously, and what drives disparities in 2S/LGBTQIA+ communities.
Despite the challenges I have had navigating my pain, I have also worked with wonderful providers who listened with care and created space for me to speak openly. These experiences showed me what affirming care can look like and continue to motivate my work as a provider supporting people who have felt unheard.
Why 2S/LGBTQIA+ experiences of pain must be understood
We still do not fully understand how chronic pain affects 2S/LGBTQIA+ communities or why disparities exist. Emerging evidence suggests higher rates of and more widespread chronic pain in our communities1–4, but most data come from health records that rarely or sparingly include meaningful information about sexual orientation or gender identity. When such data is collected, it also reflects only those already accessing care, which means the disparities we see are likely underestimations. Some research proposes these disparities are related to stigma, discrimination, minority stress, and barriers to affirming care5–8, but more work is needed.
To better understand chronic pain among 2S/LGBTQIA+ communities, we need to hear directly from community. We need to learn about what pain feels like in their daily lives, what helps or worsens it, the emotional and social realities that shape it, and the systemic barriers that complicate care. Research created by and with 2S/LGBTQIA+ communities gives us the best chance at building solutions that actually support people.
Introducing SHAPE+: A community driven approach to pain research
This is why our team launched SHAPE+ (Shaping Research in Pain through Equity for 2S/LGBTQQIA+ Communities). SHAPE+ uses a citizen science approach in which 2S/LGBTQIA+ community members are not just participants. They are partners who guide the research, shape the questions we ask, help set priorities, and influence how results are shared.
For the first phase of this work, we are inviting 2S/LGBTQIA+ people across Canada to share their experiences with chronic pain through an anonymous online survey that takes about 10 to 30 minutes. Community responses will support community workshops where participants will co-develop and co-prioritize research questions. The full journey of the project and ways to get involved are available on our website.
Our aim is to build a research agenda that reflects the diversity within 2S/LGBTQIA+ communities across cultures, where we prioritize engagement with Two-Spirit, intersex, trans, and non-binary people, along with people whose experiences sit at the intersections of many identities. This includes honoring the unique experiences within each group, rather than treating 2S/LGBTQIA+ communities as a single collective.
Why this work matters now
Chronic pain is more than a physical condition. It affects mental health, relationships, work, identity, and overall well-being. When people also navigate stigma or discrimination because of who they are, the impact becomes even more layered. Many queer and trans individuals avoid care because they fear judgment or misgendering. Others worry about the Safety Math of disclosure.
By listening directly to 2S/LGBTQIA+ communities, we can build a clearer and more compassionate understanding of chronic pain. Research that values these stories can guide better training, more accessible resources, and systems that truly support people.
If you are a 2S/LGBTQIA+ person and live with chronic pain, I invite you to share your experience through the SHAPE+ survey. Your story is important. Your voice carries power. Together, we can transform how chronic pain is understood and addressed.
Codie Primeau (PhD, PT, MSc.) is a white settler, cis man, and gay and queer person living with ADHD and chronic lumbopelvic pain. These identities shape how he navigates health care and the privilege he holds within it. He is also an Assistant Professor at Western University in London, Ontario, and an Affiliate Scientist with Arthritis Research Canada. His work as a physiotherapist and research focuses on musculoskeletal and arthritis, including pain, 2S/LGBTQIA+ health, and community engagement.
References:
- Zajacova A, Grol-Prokopczyk H, Liu H, Reczek R, Nahin RL. Chronic pain among U.S. sexual minority adults who identify as gay, lesbian, bisexual, or "something else". Pain. 2023.
- Chadwick AL, Lisha NE, Lubensky ME, et al. Localized and widespread chronic pain in sexual and gender minority people—an analysis of the PRIDE study. Pain Med. 2024;25(7):483-486.
- VanKim NA, Flanders CE, Bertone-Johnson ER. Sexual Identity Differences in Chronic Pain: Results from the 2019 to 2021 National Health Interview Survey. Am J Prev Med. 2024;67(4):586-591.
- Fredriksen-Goldsen KI, Kim H-J, Shui C, Bryan AEB. Chronic Health Conditions and Key Health Indicators Among Lesbian, Gay, and Bisexual Older US Adults, 2013–2014. Am J Public Health. 2017;107(8):1332-1338.
- Stocking SQ, Webb CK, Miller GH, Thomeer MB, Goodin BR, Sorge RE. Understanding Risk of Chronic Pain Development and Related Mental Health Disparities Among Transgender People: A Review of Current Literature and Future Directions. The Journal of Pain. 2024:104681.
- Clemens KS, Matkovic J, Odelson A, Strain A, Wesselmann ED. Psychosocial influences on pain in transgender individuals. Frontiers in Pain Research. 2025;6:1546526.
- Anger JT, Case LK, Baranowski AP, et al. Pain mechanisms in the transgender individual: a review. Frontiers in Pain Research. 2024;5:1241015.
- Abd-Elsayed A, Heyer AM, Schatman ME. Disparities in the Treatment of the LGBTQ Population in Chronic Pain Management. J Pain Res. 2021;14:3623-3625.
