Aug. 26, 2024 – On a warm July evening, Raleigh Rivera, 29, went to see a band play a backyard show in East Los Angeles. The audience – around 40 people – wore KN95 or N95 masks, tested for COVID beforehand, and agreed that they would excuse themselves from the rest of the crowd if they needed to take off their masks for any reason. Before they played, the band showed their negative test results to the attendees and asked their permission to perform without masks. They were lit with far-UV lighting, which has been shown to safely kill airborne viruses.
This might sound like a scene from three or four summers ago, when taking COVID precautions was encouraged by most health officials, policymakers, and community members – but it happened this summer. For Rivera and the rest of the crowd – who identify as COVID-conscious – life hasn’t gone “back to normal,” as it has for so many others.
Rivera and other COVID-vigilant people have cause for alarm: At the beginning of August, the percentage of people testing positive for COVID reached its highest level since January 2022, according to CDC data. The public health agency’s wastewater testing tracker shows “high” or “very high” virus levels in most U.S. states.
Many studies have shown that properly masking gives you an extra layer of protection against COVID. But Rivera, like others in the COVID-conscious community, is usually the only person wearing a mask in any given setting.
“Continuing to think and live this way kind of feels like you’re living in an alternate reality all the time,” she said. She has POTS (postural orthostatic tachycardia syndrome), a chronic blood disorder that can cause your heart rate to jump if you stand up. Along with masking wherever she goes, Rivera and her husband have air purifiers throughout their home and use a saline nasal rinse and an antimicrobial mouthwash before heading outside.
Despite her vigilance, Rivera caught COVID in the fall of 2023. She got on Paxlovid right away, yet she was hit with crushing fatigue that incapacitated her for a few weeks, she said. After she recovered, her POTS symptoms – which can include fatigue, lightheadedness, and nausea – worsened. She is just starting to get her appetite back, almost a year later.
“Everything is still a risk calculation, wherever I go. But at this show, I felt like my body could finally relax,” she said. “I felt very present and a part of something in a way that I haven’t been able to experience in a long time.”
Local governments in places like New York City and Los Angeles have considered imposing mask bans – mostly in response to protesters wearing masks at rallies to conceal their identities – regardless of the summer increase in COVID case numbers.
“It takes a lot of confidence,” said Rivera. “It gives up a piece of my social currency. I know there are places I’m no longer invited to because [wearing a mask] either weirds people out or bums them out that I’m going to keep this reminder of the pandemic on my face.”
For Rivera and others, much of the onus of community protection seems to fall on those with weakened immune systems. One of their biggest concerns is the lack of masking in medical settings. While some health systems have brought back masking policies since numbers have started to climb again, many have not done the same.
Aaron Friedberg, MD, a professor and internal medicine doctor with a specialty in long COVID at Ohio State University’s Wexner Medical Center in Columbus, wears a mask in every clinical setting, even though the hospital no longer requires it.
“There are still some people who get very sick from COVID, even though it’s much less common now,” he said. “To me, wearing a mask is a relatively easy thing I can do to improve their health. It’s an important way of showing respect for your patients, to protect them.”
Bernard Camins, MD, an infectious disease specialist at Mount Sinai Hospital in New York City, also understands this worry. The hospital still sees plenty of patients with COVID, he said, but the vaccinated and boosted hospital staff does not tend to see transmission of the virus because they continue to wear the right personal protective equipment.
Olivia Belknap, an associate marriage and family therapist in the Los Angeles area, is COVID-conscious and sees many clients with similar concerns. She said there is a lot to what it means to be COVID-conscious.
Nowadays, many might consider taking COVID precautions to be extreme, but Belknap herself (who was also diagnosed with POTS after a COVID infection) and some of her clients are not yet comfortable getting on an airplane or eating outside on a restaurant patio. She sees clients who aren’t willing to step indoors almost anywhere that isn’t their own home.
“A majority of [my clients] have sought me out because they know that regardless of what levels of precautions they’re taking, I’m not going to pathologize them for it or discourage them from doing those things,” said Belknap. “It’s more about finding meaning and connection in your life while still doing things in a way that is safe for you and makes you feel comfortable.”
Belknap said it’s not her place to tell people they’re being too prudent or too lax in their precautions. Sometimes, she works with clients who are anxious about taking the first steps in loosening their own restrictions; other times, she’s talking to people struggling to come to terms with what it means to have a substantially smaller social circle for what could be the rest of their lives.
Although it seems like the rest of the world has moved on, the worry is valid for those whose lives may be upended by a post-viral reaction from a COVID infection, Camins said.
“It may not be death, but it’s still debilitating. You’re alive, but it’s not a fun way to live life,”
While protecting yourself against what could be life-altering long COVID symptoms is more than justified, Camins said there is a potential downside for those with weakened immune systems: They might get sicker from other viruses than they would have before.
“The only thing I worry about for this community is that, since they’re very careful about COVID, they’re probably not getting exposed to other viruses that their bodies can build immunity against,” he said. “At some point, if you let down your guard, you’re going to get sick a lot.”
There are times when Rivera wants to give up on masking altogether, like when she attends a wedding. She still goes to many of them, and she puts in the time to do her makeup, despite knowing most people won’t see her face for most the night. She’d like to be able to take her mask off indoors, eat inside without worrying, or have a drink with friends.
There could be a future for Rivera that doesn’t include the same level of precautions she’s currently taking – but that comes with conditions.
“There are some places that I know I will continue to wear a mask forever, like in medical settings or traveling,” she said. “But I also know that there will be no more weddings for me if I am permanently and significantly more disabled than I already am, and that’s very possible with another infection.”
