“Are you sick?” the Uber driver asked. “Is that why you’re wearing a mask?”
I launched into my usual monologue, delivered to strangers weekly at this point, explaining how COVID-19 transmission is still high and that I don’t want to be reinfected to worsen my existing Long COVID.
He looked at me, puzzled, through the rearview mirror. “I haven’t heard of that before,” he said, “but you look really good!”
I awkwardly stammered that I can no longer exercise, and a few years ago I could barely leave the house, almost dropping out of my graduate school program. I listed statistics of Long COVID prevalence and the compounding risks of infections.
But it was lost on him. “You just need to build your immunity and have a positive mindset,” he said. “I trust you will recover soon!”
It bothers me that people often don’t even blink at what I share, glossing over the serious ramifications of what one SARS-CoV-2 infection did to my life. I hold years of knowledge, research, and pain inside me. But how do I succinctly explain that in a few minutes to someone who has never even heard of Long COVID before?
One of the greatest barriers for addressing the Long COVID crisis is public invisibility. Statistics alone cannot convey what it means to live with a disease that is chronic and often episodic.
Awareness efforts need to make illness legible to the public: showing the disease in photography and other compelling media. Art offers a way to translate lived experience into shared understanding. Some of these efforts are already in progress: in October 2025, my research team launched a photo exhibition called Living with Long COVID at the Museum of Vancouver.
One of the greatest barriers for addressing the Long COVID crisis is public invisibility. Statistics alone cannot convey what it means to live with a disease that is chronic and often episodic.
My colleagues and I at Simon Fraser University investigated healthcare and information access for people with Long COVID and their caregivers in British Columbia, Canada. A key finding from our 2023 research, led by Kaylee Byers, was that people with Long COVID and their caregivers need systemic awareness of Long COVID to reduce stigma and improve access to care. With this priority in mind, my colleague and exhibition project lead, Rackeb Tesfaye, proposed the arts-based method of “photovoice” to help make the unseen realities of Long COVID visible.
Tesfaye defines photovoice as “a participatory research method that engages participants as photographers to share their narratives and perspectives in their own voice through photos.” This method uses art to drive community empowerment and social change.
Photography goes beyond an infographic or a research paper. We may describe having “fatigue” or a “symptom flare-up” to others, but often they just don’t get it. Worse still, it takes up our valuable energy to find the words and explain the experience through our cognitive dysfunction. They can’t visualize how our days are organized at the whims of symptom management.
It often seems unfathomable to the curious coworker, the friend from high school I haven’t seen in nine years, or the professor glancing at my conference poster that there are hundreds of millions like me out there with similar experiences. They don’t see us in the throes of post-exertional malaise or attempting activities of daily living. They don’t see us “poisoned” on our couches and our beds, the millions missing from a society whose purview urges to “return to normal.”
Our photo exhibition seeks to help people see these hidden experiences. It communicates what Long COVID is like through our own voices and our own lenses. As the adage goes, a picture is worth a thousand words.
Our call for submissions across Canada received 240 photos from 46 people with Long COVID. We provided photo prompts for people to consider when photographing the overall theme, “a day in the life of a longhauler”: “beginning of day,” “middle of day,” “end of day,” “healthcare moment,” “lowlight,” and “highlight.”
Reviewing the photos was emotional but validating. I saw my own ups and downs of Long COVID life through so many of these experiences, even though they were submitted by different people. The blackout curtains. Noise-canceling headphones. Respirators. Eye masks for sleeping. An array of pills and supplements. Notes and papers strewn over a table, evidence of our personal medical research. Mobility aids. The comfort of pets. A laundry hamper at the base of a long set of stairs. Sitting on the kitchen floor to prepare a meal. Selfies conveying grief, anguish, isolation, and exhaustion. So, so many photos of resting in bed.
Members of our community advisory group also saw themselves reflected in these images. Robert DeRosa, who has had Long COVID since the start of the pandemic, shared, “Even in suffering, there’s agency here. We are not just patients; we are storytellers reclaiming what this illness has taken from us.”
DeRosa and our other two advisory group members, Katharine Baldwin and Katy McLean, worked together with our research team and museum staff to provide feedback on which photo submissions to display more prominently, wording and content for the explanatory text panels, font and colors presenting submissions, and improvements for accessibility.
The exhibition also recognizes the patient-led advocacy that so many of us take part in to make our presence visible in public spaces. Nicole Rogers and the Canadian COVID Society helped us include rows of pillowcases and handwritten testimonies submitted for Long COVID Awareness Day 2025. Laden with the symbolism of so much time spent in bed, the pillowcases also reference similar instances of in-person art advocacy, such as a previous #MEAction’s pillowcase and bed display outside the Washington Monument for ME Awareness Day.
Even in suffering, there’s agency here. We are not just patients; we are storytellers reclaiming what this illness has taken from us.
Robert DeRosa, community advisory group member
I anticipate that future Long COVID education and awareness-raising initiatives will continue to use art and photography. Long COVID Web’s annual Canadian symposium has already been showcasing art submissions, with many submitted by children. A U.K. gallery also hosted a Long COVID exhibition last fall, featuring artwork from the advocacy group Long COVID Kids. And, last year in Colorado, there were two Long COVID art exhibits, one of which had contributions from incarcerated artists.
The common thread among these initiatives is an urge to be seen. An urge to communicate the realities of our day-to-day lives through our own lenses. An urge to be understood by disbelieving friends, family, colleagues, and doctors. Photography as its own form can differ from paintings or other physical media, as it often includes images of the everyday mundane that viewers can relate to.
As I shared in my speech at the exhibition launch event, the photos we featured could represent your neighbor, your grocery store clerk — and me. What moves people like my friends and Uber drivers is not statistics, and sadly not even science. Human connection and stories can go beyond the data, resonating with and emotionally impacting other people.
Visitors have realized that they, too, could be someone in these photos, according to feedback notes we’ve received. Some have reassessed their Long COVID risk. Others wrote kind messages of renewed understanding or solidarity. One man wrote that he felt represented in these photos, even though he didn’t identify as a longhauler. For myself, I feel personally emboldened that we can showcase such public representation with institutional validation.
I also hope that museums and galleries around the world will recognize the power of community co-creation. Importantly, these exhibitions should always center and be advised by people living with Long COVID. We deserve to have the opportunities to tell, and show, our stories in ways that are simultaneously accessible to us and can push back against the ableist narratives of our condition.
While change will not occur overnight, I am at least telling my Uber drivers now that we have a Long COVID exhibition they can go see.
Learn more about the exhibition, including the staff, funders, and contributors, on the Museum of Vancouver’s website. A virtual recorded walkthrough will be available in early March, 2026. The physical exhibition is on show at the Museum of Vancouver until March 22, 2026.
Kayli Jamieson (she/her) is a longhauler of four years who engages in Long COVID science communication and advocacy. She is a research fellow at Simon Fraser University and is completing a master’s degree in communication. You can follow her at @wandering on Instagram and @wanderingkayli on Bluesky.
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