Long COVID disrupts struggles for justice, as activists and organizers with the disease are forced to suspend or change their tactics, facing a community that largely ignores COVID precautions.
Key points you should know:
- Developing Long COVID, or becoming a caregiver for someone with the disease or a related disability, can cause activists to pause or leave organizing and fighting for justice.
- Some organizers with Long COVID coordinate virtually or with other COVID-informed organizers who mask and take other precautions when working together in person.
- Activists living with the disease also adapt their physical protesting by using assistive tools.
- Some activists with the disease who previously organized around other causes have shifted their efforts to COVID-related and disability justice-focused mutual aid, such as mask distribution, clean air advocacy, and financial support for people with myalgic encephalomyelitis (ME) and Long COVID.
- When organizers suspend activism, movements lose practical logistics knowledge, contacts, and valuable lived experiences with direct action.
During the summer of 2025, 65-year-old romance novelist Suzanne Brockmann and her husband took part in a weekly protest. Every Wednesday at lunchtime, they joined others standing and sitting outside of the Immigration and Customs Enforcement (ICE) facility in Burlington, Mass.
Returning to sustained protesting was a major shift for Brockmann, who became acutely ill in December 2019 and was nearly hospitalized. By summer 2020, she was struggling with angina, heart palpitations, and intense nerve pain on her left side, symptoms of what she came to understand as Long COVID.
While learning to pace to keep her symptoms manageable, she also dreamed of returning to the advocacy work that’s been central to her life for three decades.
“Being part of something big, positive, hopeful, and inspiring is crucial for my mental health,” she told The Sick Times over email. Since last summer, she’s attended actions more regularly.
Because of her Long COVID symptoms, Brockmann now sits on a camping stool at events and finds parking close to demonstrations. “I’ve also learned that it’s okay to show up for 15 minutes or less,” she said. When her fatigue is especially intense, Brockmann’s husband drives them past the protest, and she waves a large flag in support out of their car window.
A dozen activists of varying ages, backgrounds, and involved in a variety of movements shared their stories with The Sick Times. They explained how developing Long COVID changed and even eliminated their ability to stay involved in social justice struggles in the U.S. and Canada. One parent interviewed paused her long-term advocacy for equity in public schools when both she and one of her children developed Long COVID. Others significantly shifted or ended their involvement in direct action planning, mutual aid organizing, and electoral politics.
When the SARS-CoV-2 pandemic began, activists who organized in physical spaces adapted to organizing online. But as their respective movement groups ended airborne infection protections at meetings and actions, making them unsafe to attend, many of the activists interviewed for this story said they were either too disabled or too burnt out to build new movement connections. Historian Hannah Proctor defines burnout as the emotional experience of political defeat, including weariness, fatigue, and feelings of despair.
Dean Spade, a lawyer, author, and longtime activist, has seen this trend firsthand. During his 2025 tour to promote his latest book, Love in a Fucked Up World, he required masks at readings to make the events more accessible to those frequently excluded by a lack of COVID-19 protections in public spaces.
“I have seen many beloved organizers have to reduce their community work or leave organizing altogether because of experiencing Long COVID or having new care obligations” when someone in their life developed it, Spade wrote to The Sick Times. “Using COVID precautions in the spaces we organize can make those spaces more accessible to more people in our communities.”
COVID-informed, fighting other battles
Sam Martin* is a longtime environmental justice activist in Canada. Like many individuals interviewed for this article, Martin requested anonymity due to the political and legal risks of their activism. Pre-pandemic, they valued the shared urgency and “collective capacity and trust” required for direct action. “You need trust to take the kinds of actions we were planning,” Martin said.
Like many, Martin saw that pandemic stay-at-home orders had an immediate impact on the planet’s health — and felt it was a rare opportunity to demonstrate the necessity of slowing climate collapse. They also noted that initially, neighbors who had previously never even spoken shared care packages of food and masks and socialized at a distance, playing music from apartment balconies. As the pandemic wore on and official guidelines changed, fellow organizers seemed to forget or ignore the positive environment and social adaptations they’d witnessed, and refused to maintain protections like masking, meeting outdoors, and COVID-19 testing to keep one another safe.
“Mixed messages about how COVID actually spreads were really straining relationships,” added Martin. “Some comrades started saying that they wanted to ‘go back to normal,’ and it absolutely crushed me. We poured so much of our lives into fighting ‘normal.’ ‘Normal’ was never okay before.”
Alex Smith* had a similar experience. The 38-year-old Nova Scotia-based activist spent many years organizing for community food security, shelter for the unhoused, and climate justice. In addition to direct actions in solidarity with Indigenous land and water defenders, Smith has been involved in climate justice actions across Canada.
“I tried to get the climate justice folks to see the connection between COVID and biosphere collapse,” Smith said. They noted that 2020 pandemic shutdowns were tied to a reduction of greenhouse gas emissions by about 7%, the reduction needed to limit global temperature rise by 1.5 degrees Celsius, according to climate scientists. But Smith said that members of their organizing groups lacked the discipline to maintain COVID-19 precautions, and most of their coalitions splintered by 2022.
Some comrades started saying that they wanted to ‘go back to normal,’ and it absolutely crushed me. We poured so much of our lives into fighting ‘normal.’ ‘Normal’ was never okay before.
Sam Martin*, environmental justice activist in canada
Long-term organizers grapple with Long COVID
For over a decade, 39-year-old Rachel Bean has been involved in the Movement for Black Lives in St. Louis and Minneapolis, where she currently lives. She participated in direct actions following the police murders of Black men, including that of Michael Brown on August 9, 2014, and George Floyd on May 25, 2020.
In 2020, Bean co-organized the Sanctuary Hotel, a mutual aid housing project responding to the overlapping crises of COVID-19, homelessness and criminalization, and intensified police presence and curfews due to Floyd’s murder.
“I was someone who had dealt with chronic illness way before the pandemic started,” Bean told The Sick Times. Before Long COVID, she suspects she had myalgic encephalomyelitis (ME). But early SARS-CoV-2 infections — she believes she had at least two before summer 2020 — moved her baseline from moderate to severe ME.
Similarly, after their first SARS-CoV-2 infection in January 2022, Smith experienced chest pains and was often bedridden due to post-exertional malaise (PEM). “I knew it was Long COVID,” they recalled.
Many of the organizers who spoke with The Sick Times understood that Long COVID could threaten their bodies as well as their abilities to organize. Most of those interviewed had been working to avoid SARS-CoV-2 infection from the start of the pandemic, including by masking and maintaining virtual options for education and community meetings. After developing Long COVID, some continued activism-related tasks from home, such as sending emails or making calls about an issue, but otherwise prioritized rest.
When organizers depart or suspend their involvement in movements, they don’t just physically and emotionally leave the arena. With them goes a wide body of both practical logistics knowledge and contacts, in addition to their own valuable experience navigating or disrupting complex systems. Some, like Smith, use their knowledge for online mutual aid groups and mask blocs, focused on COVID-19 supplies and education. But many feel too unwell to continue organizing at all.
Bean was house- and bedbound from August 2021 until late 2024, when she was prescribed a beta blocker that has helped her regain some functionality. She’s since returned to online mutual aid work, working alongside other organizers to raise hundreds of thousands for community members trying to meet basic needs, including food and housing. For several months in 2026, she co-organized a remote rent collection fund that supported people impacted by the ongoing ICE occupation in Minneapolis.
Ash Brown*, another organizer in Minneapolis who lives a few blocks from where George Floyd was murdered, has been involved in abolitionist and anarchist organizing for decades. Following the 2020 uprisings, they led jail support for protesters who were federally indicted after the burning of a police precinct.
One of those protesters contracted and was hospitalized with COVID-19 while incarcerated. The protester survived their acute infection but later developed Long COVID. About six months later, so did Brown. “When I got Long COVID, we shared a lot about how difficult that is,” they said.
In recent months, Brown has watched “every single person” they know in Minneapolis respond to ICE’s kidnappings — including friends and comrades with energy-limiting conditions. Those friends and comrades “have our own group chats for commiserating, strategizing how we can help fundraisers, and rereading Johanna Hedva’s ‘Sick Woman Theory’ for the hundredth time,” they wrote, referring to an important essay in disability activism.
“I feel deep frustration that my Long COVID keeps me home,” Brown said. “I grieve hard every day for my city, my community, and for what I lost to Long COVID in terms of participating and supporting this unprecedented federal invasion.”
I feel deep frustration that my Long COVID keeps me home. I grieve hard every day for my city, my community, and for what I lost to Long COVID in terms of participating and supporting this unprecedented federal invasion.
Ash Brown*, abolitionist organizer in Minneapolis
Supporting others while managing symptoms
Suzanne Brockmann’s years of living with Long COVID have shifted her advocacy and protesting. In the 1990s, Brockmann and her husband became deeply involved as straight allies in MassEquality, an organization pivotal in the 2003 Massachusetts Supreme Court case that legalized same-sex marriage. When Brockmann’s queer romantic thriller, All Through the Night, became a New York Times bestseller, she donated her entire advance and royalties in perpetuity to MassEquality — what she estimates is now well over $300,000.
After developing Long COVID early in the pandemic, Brockmann first returned to physically protesting in May 2022 when news leaked that the U.S. Supreme Court had voted to overturn Roe v. Wade. She was in California at the time co-producing a film, when COVID-19 safety measures for film and television were still robust.
“I was having a good year, and this was one of the safest places to be,” Brockmann explained. “There was a rally on one of our days off, so the entire production team went, masks on” to protest the decision.
But as her health has deteriorated, she has been forced to adapt her protest methods. “It’s been rocky, learning to pace, because my health has been steadily going downhill since 2023,” she explained. Now, in addition to frequently sitting on a camping stool at demonstrations, she makes signs using foamcore, which causes less hand fatigue than gripping flimsier thin cardboard placards.
Martin, a Canadian climate activist, works remotely for a union and has paused non-work related activism. Martin did feel well enough to attend a protest in early 2022, countering the Canadian convoy protests against COVID-19 vaccine mandates.
While Martin appreciated working with fellow climate activists again, “it didn’t really reaffirm our shared purpose because we no longer shared reality,” they said. “I no longer think it’s possible to stop biosphere collapse if [climate] activists refuse to face reality” about COVID.
Other organizers felt forced to suspend their activism when institutions ended inclusive virtual options. Some felt they couldn’t risk infections from attending in-person meetings. Many noted the painful irony that the very cause that sparked their activism — such as climate collapse or education equity — is directly worsened by a lack of pandemic mitigations.
In an email, Dean Spade noted how much activist communities have lost to the pandemic. “Long COVID has taken many beloved people from us and caused others to lose capacities to be part of some community activities where they were very much needed,” he wrote.
Martin has now left climate organizing altogether and said that they feel very alone. “In some ways that’s less about having Long COVID and more about the feeling of betrayal.”
Long COVID has taken many beloved people from us and caused others to lose capacities to be part of some community activities where they were very much needed.
Dean Spade, lawyer, author, and activist
Britta Shoot is a San Francisco–based journalist and editor. She is writing a book about early HIV/AIDS pandemic activism.
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