One in nine Canadians have experienced Long COVID symptoms, ranging from mild to debilitating. A new exhibition at the Museum of Vancouver, co-produced by Simon Fraser University's Faculty of Health Sciences, invites visitors into the often-invisible world of those living with the life-altering effects of COVID-19.
Long COVID is a chronic condition affecting one or more organ systems that occurs after a SARS-CoV-2 infection and lingers for at least three months as a continuous, relapsing and remitting, or progressive disease state. Despite its prevalence, the condition remains widely misunderstood, under-researched, and stigmatized.
The Living with Long COVID exhibition brings these realities to light and offers a unique opportunity to intimately understand Long COVID through the eyes of those living it.
"One of the key findings of our research was that people who are living with Long COVID want to raise awareness of this ongoing public health crisis, especially as COVID continues to circulate," says project team member Kayli Jamieson, a communication master's student and health sciences research fellow who has Long COVID herself. "The impact of Long COVID is not just medical it's economic, social, and deeply personal. We are isolated not only by our symptoms, but from lost relationships. The suffering compounds when we face silence, disbelief, and doubts from friends, family, employers, and even healthcare providers."
The exhibition was initiated by SFU team members to mobilize research findings and amplify the messages they heard from the Long COVID community. After securing support from the Museum of Vancouver, the Post-COVID Interdisciplinary Clinical Care Network (PC-ICCN) and patient advocates, the project team issued a call for submissions, inviting individuals to document a day in their lives.
Forty-six participants from across Canada responded, contributing over 240 photographs and short reflections that candidly reveal moments of pain, joy, fatigue, resilience, and everyday adaptations.
The project began in 2022 when researchers from the Faculty of Health Sciences interviewed people living with Long COVID - self-identified "Longhaulers" - and their carers to understand their support needs. The majority of people interviewed expressed a need for their experiences to be acknowledged and for greater public awareness of Long COVID.
Over 200 symptoms are associated with Long COVID, making it difficult to diagnose. And although thousands of studies have been conducted to date, there remains no standardized treatment or cure. The complexity of this condition, along with a lack of awareness and education has placed many Longhaulers in the position of having to persuade health care providers, employers and others that their medical symptoms are real while simultaneously advocating for resources to better understand and support those living with Long COVID.
Other SFU staff and trainees who led this project include: Rackeb Tesfaye, health sciences research associate; Kaylee Byers, former health sciences adjunct professor; and Rhien Hare, health sciences master of public health alumnus.
"By amplifying the voices and deeply personal accounts of Longhaulers, the Living with Long COVID exhibition aims to challenge stigma, foster empathy, and highlight the urgent need for greater understanding, care and research," says Tesfaye.
The exhibition will be on view at the Museum of Vancouver from Oct. 4, 2025, to March 22, 2026.
Living with Long COVID was generously funded by grants from Michael Smith Health Research BC and the Pacific Public Health Fund.
