Listen to Nadica Zimmerman discuss this story on our podcast:
A couple of years back, I was pushed out of starting a new union charter in my corner of Arkansas because my requests for basic COVID-19 caution at meetings were deemed too difficult to accommodate. This, along with transmisogynistic dismissals of my ideas and experience, was just too much to try and work through.
Going from pleasant emails and social media messages to persistent misgendering was a shock in-and-of itself, but having my offer of free masks and Corsi-Rosenthal boxes denied alongside my organizer training and experience was something I wasn’t prepared for. You expect people in organizing spaces to be a bit more understanding and compassionate, or at the very least respectful.
Frustrations like these have compounded in my social life, first with the loss of a long-term partner who felt my desire for continued mitigation was too stringent. It’s also made me lose friends, and even roommates: COVID-19 denial has changed my life and my finances radically. In spite of that, I persevere: Even beyond protecting my own fragile health, I refuse to be the one who gives COVID-19 to my high-risk parents.
After years trying and failing to find a job as a librarian, I founded the CovidSafeHotties community in 2023 and the online archive in 2024 specifically to help spread timely, science-based information about COVID-19 as federal and state public health organizations continued a campaign of minimization. Collecting and cataloging open-access COVID-19 news and science led me into connections with those seeking COVID-cautious community from all across North America — and a few from beyond. Many come from more rural places in the South and Midwest that lack active mask blocs or clean air clubs.
Combining my experience building COVID-safe communities online and interviews with over a dozen COVID-cautious people who are “still COVIDing” despite a lack of community, family, and/or peer support, I learned that many are stuck in situations that make living a normal life difficult or impossible because of widespread COVID-19 denial. This essay is a collection of advice and experiences for those who may be the lone masker in their own community, and a call to action for people in more COVID-cautious places to facilitate connection with those outside your immediate areas.
Long COVID coupled with isolation
Many people I talked to have Long COVID; they have faced challenges with asking friends and family members to help them stay safe, but some have found community in other ways. The amount of times I heard the phrase “people just aren’t talking about it” in these interviews really stuck with me. Many weren’t just talking about major news networks or politicians, they were talking about their friends and families and doctors. Participating in conversations like these is a step in the right direction.
Joey, who developed Long COVID in 2020, has lived in Missouri since the beginning of the pandemic.“I’ve been luckier than others,” he told me. He’s managed to find a job that accepts his accommodations and allows him to work from home most of the time. I asked what advice Joey had for people who needed similar accommodations, and he told me that firm boundaries are crucial: “Being unshakable in your boundaries, and practicing them with yourself as well.” (Like others interviewed for this story, Joey asked to use only his first name or a pseudonym to protect his privacy.)
Zed is from North Carolina and is currently going through college while learning to cope with Long COVID. “My dream is to be a performing, touring artist, but I can’t do that if I can’t breathe well enough to sing a song,” they told me. To still practice music, Zed performs remotely on Twitch when they can find the energy, appreciating the platform’s flexibility and global reach.
I identify with this, too. Avoiding high-risk scenarios has kept me from being a part of the music scene like I had before the pandemic. Flan, who lives in Louisiana, has experienced similar grief, as Long COVID has kept her from concerts and other events. She reversed her relaxing of precautions after developing Long COVID and learning more about the risks of infection. “It’s never too late to change what you’re doing,” she said.
Flan’s noticed a lot of social impact, both from continuing caution and the symptoms of the disease: “A lot of people have viewed me talking about my health as negative … People really just don’t want to hear about COVID or grieve and talk about these things.”
Gene’s Long COVID has also been incredibly isolating. Complaints about “lockdowns” that many people shared in 2020 “still apply to us who are still COVIDng,” they said. Gene misses family dinners, as Long COVID has left them with an altered sense of taste.
Despite some support from their family and at least one friend who still takes reasonable precautions, Gene feels overlooked: “My friends and my family members know what I’ve gone through, and yet they still don’t mask [in public].” Gene has also faced a slow loss of friends and community, as a lack of safety and those people’s perception of Gene’s caution built the wall between them.
A lot of people have viewed me talking about my health as negative … People really just don’t want to hear about COVID or grieve and talk about these things.
Flan, Louisiana
Radicalized by the government’s COVID-19 failures
Long COVID and COVID-19 caution have led many people to increase their political engagement; those I interviewed felt radicalized by the broad governmental mishandling of public health over the past five years. “COVID has really opened my eyes to the stigma disabled people face,” said Harper from Alabama.
Some people have noticed the crystallization of disparities they were already experiencing before the pandemic. Dimitri lives in Mississippi, and said they lost three family members in 2020 and 2021. “People in my family just kinda had to thug it out!” they told me, discussing the inequity of mitigation, treatments, and information in Black communities.
For Dimitri’s family, efforts employed to contain COVID-19’s spread, like stimulus checks and free COVID treatment, created some financial and medical stability that disappeared only months later: “I don’t want for us to wait ’til that happens again for us to take a step forward, because we took, like, two steps forward and ten steps back.”
When COVID-19 emergency funding dried up in Mississippi, it was communities like Dimitri’s that were the first to lose access to critical public health tools: No more free PCRs, masks, Paxlovid, or treatment. The rise in food prices and other necessities since 2020 has assured many can no longer “return to normal” in a financial sense, while showcasing the ways pre-COVID “normal” was already hurting people.
Living in rural Iowa, Melissa had some similar insights: “Rural communities are left for themselves,” Melissa said. Without public transit and living far from hospitals, just getting to medical care can turn a household accident into a life-or-death struggle. Lower-quality medical care and fewer hospital beds in rural areas mean that COVID-19 surges result in more deaths more quickly. All too often on social media, COVID-19 deaths in red states are celebrated by liberals on the East and West coasts as “acceptable losses.” And it hasn’t stopped with the rise of measles, despite calls for decency back in 2021.
The health-supremacist ideals behind these barbs are clear to those who are disabled by COVID-19 or otherwise. “Somebody doesn’t have to be disabled to care: It just means that someone who already has disabilities has more to lose,” Melissa said.
Across those I interviewed, the government’s policy of COVID-19 denial made them change how they interact with politics. A few have gone as far as helping to found a local mask bloc. Both Gene and Joey lamented that variable ability brought on by Long COVID made their attempts at organizing, protesting, and other actions all the more difficult.
We need people with Long COVID centered in the discussion, but we also need more people to speak on their behalf. Just talking about the threat of viral illness with your friends, family, and coworkers is a much-needed effort to help make change.
Somebody doesn’t have to be disabled to care: It just means that someone who already has disabilities has more to lose.
Melissa, Iowa
Highest hopes and realistic desires
I asked everyone I interviewed what they’d like to see regarding public health and COVID-19 caution, both in a “rainbows and unicorns” fantasy world and reality. Here are some common and notable answers:
- Clean air and improved ventilation everywhere
- Universal masking in medicine
- Renewed COVID-19 testing measures
- Broad government support for sick leave
- Support for remote work wherever possible
- Science-informed communication about public health
- A “Project Warp-speed” for COVID-19 prophylaxis
As someone who has been the solo protester and activist for COVID-19 (and other causes), I know just how isolating and Sisyphean it can feel to be the only person doing that thing. But activism is one of the few things where “if you build it, they will come” actually works. You are filling a niche: I might be the only person at Pride carrying a sign about Long COVID, but there are also a dozen or so masked people who are so excited to see me handing out masks and pamphlets.
The same thing applies online. When I first started building CovidSafeHotties, my goal was to have resources on hand when someone told me, “You have to live your life.” Now, the site has hundreds of unique visitors each day, and the adjacent Tumblr blog I run gains numerous followers daily. Every one of those clicks is potentially a break in the chain of infections. Every interaction is a potential small victory.
Every one of those clicks is potentially a break in the chain of infections. Every interaction is a potential small victory.
How can I help?
Every discussion ended with a simple question: “What can others who have more accepting communities do to help people in situations like yours?” I’ve condensed the answers I got into this list.
- Funding: If you can, give people financial assistance, especially those trying to fund their Long COVID survival. If you can’t give someone money, you can spread donation posts or plug COVID-conscious organizations like clean air clubs and mask blocs.
- Shift the cultural conversation: Through action and word, support a COVID-safer world. Help to amplify those who are marginalized, and build metropolitan cultures that value care and community over consumption and temporary comfort.
- Masks: Wear them. Hand them out. Donate them to mask blocs. Don’t give in when people demand that you unmask for no reason.
- Talk about it: Layton from West Virginia had this to share, “An honest, open dialogue goes way further than a lot of activism can because nothing spreads faster than word of mouth.”
- Inclusion: Create the possibility for hybrid events, and publicize the digital side far and wide. Every little adaptation is a step towards equity in our society.
Open and honest discussions about the cracks in our systems into which so many disabled and COVID-cautious people are swept is a step toward creating broader communities of care. Remember the power of your own voice and boundaries. In a society and culture that would have you forget COVID-19 and throw caution to the wind, simply showing up and speaking up is a necessary act of solidarity.
In a society and culture that would have you forget COVID-19 and throw caution to the wind, simply showing up and speaking up is a necessary act of solidarity.
Nadica Zimmerman is a freelance writer and volunteer archivist living in Arkansas. She runs the CovidSafeHotties archive and community, providing daily updates about COVID-19 safety, science, news, and public health concerns.
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