The U.S. has recently taken a sharp turn toward “living with,” rather than trying to avoid, COVID-19. Masks are no longer advised indoors for Americans in most parts of the country, according to the U.S. Centers for Disease Control and Prevention (CDC), and many mask and vaccine requirements have been repealed even in the most COVID-cautious parts of the country. In a poll conducted in March by Axios-Ipsos, 66% of Americans said they thought COVID-19 poses little or no risk.
It’s hard to blame people for relaxing a bit. For most vaccinated and boosted people, a case of COVID-19 is overwhelmingly unlikely to result in severe disease. But some experts say that the risk of Long COVID—the name for symptoms that last months or even more than a year after a COVID-19 case—is real enough that it should worry both vaccinated and unvaccinated people.
Long COVID is both potentially debilitating and relatively rare, which makes the risk difficult to quantify. It’s also too soon to say whether Omicron infections will lead to more or fewer Long COVID cases than previous variants, says Dr. Michael Lin, an infectious disease specialist at Rush University Medical Center in Chicago.
“The short answer is, at this time, we don’t know enough” to give concrete advice about how Long COVID should fit into risk calculations, Lin says.
Who is most likely to get Long COVID?
There is no single profile of a Long COVID patient. An estimated 10% to 30% of people who get COVID-19 develop some degree of lasting symptoms, though vaccination significantly reduces an individual’s odds. The condition affects people old and young after mild and severe COVID-19 cases. Women seem to make up a disproportionately large percentage of patients, but all genders are vulnerable. Many long-haulers, as people with Long COVID are sometimes known, were active and healthy before they got sick, while others had preexisting conditions.
No one knows exactly what causes some people to get it. Recent studies have explored potential risk factors—from asthma and Type 2 diabetes diagnoses to quirks of the immune system—but that research is still progressing.
How to reduce the risk of Long COVID
Both vaccinated and unvaccinated people have developed Long COVID. But getting vaccinated is one of the best known ways to reduce your risk—aside from never getting infected at all, of course.
A recent study from researchers at the U.K.’s Office for National Statistics found that adults who got infected after two doses of a COVID-19 vaccine were about 40% less likely to later report symptoms of Long COVID than unvaccinated people who got infected. In the study, about 9.5% of vaccinated people and 15% of unvaccinated people reported symptoms 12 weeks after infection. Other studies—most of them small—have reached similar estimates.
“You’re much less likely to get Long COVID if you’re fully vaccinated,” says Dr. Wes Ely, a professor at the Vanderbilt University School of Medicine who researches Long COVID, “but the risk does not go to zero by any means.”
Linda Loxley, a 55-year-old long-hauler who lives in Rhode Island, caught COVID-19 in March 2021, during the same week she got her second vaccine dose. After avoiding the virus for all of 2020—despite working at a senior center where she was likely to be exposed—and getting her first vaccine dose, “I thought I was safe,” Loxley says.
Instead, COVID-19 left her with excruciating headaches, debilitating fatigue, nerve pain, and cognitive dysfunction. Her symptoms grew severe enough that she had to leave her job, and after a year of being sick, she has yet to find a treatment that makes a significant difference.
Loxley says the experience of long-haulers should be a reminder that COVID-19 is a serious threat. “This is real,” she says. “We caught this virus, and we can’t get rid of it.”
How much should I worry about Long COVID?
When anyone can get Long COVID and vaccination is a good—but not flawless—way to cut risk, it’s virtually impossible for anyone to accurately calculate their odds of developing the condition.
Humans like certainty, says Robyn Wilson, a professor of risk analysis and decision science at the Ohio State University. “We want [the chances of something to be] zero or 100. Anything in between, often our perceptions or calculations will be biased” depending on personal risk tolerance, circumstances, or experience with the threat in question, she says. For example, someone whose spouse suffers from Long COVID might overestimate the likelihood of getting it, whereas someone who doesn’t know anyone with the condition might discount it too much.
Even experts are split on how heavily Long COVID should factor into an individual’s risk calculation.
“It’s reasonable to still mostly focus on the acute symptoms and hospitalization and death as being the primary motivators to avoid COVID,” Lin says, because so little is known about Long COVID.
But Ely says people shouldn’t forget about Long COVID either. “Anybody who is healthy and wants to remain healthy and live a normal lifestyle is going to have to be aware” that Long COVID is a possibility and act accordingly, such as by wearing an N95, KN95, or other protective mask in public indoor settings, he says.
With so much left to learn, Wilson says each person has to decide how risks like Long COVID will affect their behavior. One person might decide the mental-health benefits of going back to “normal” make any related risks worth it, while someone else might decide peace of mind makes continued caution worthwhile. Neither is inherently wrong or right, as long as people are not purposely endangering others or making those around them uncomfortable, Wilson says.
When accurate risk calculations aren’t possible, “you have to rely back on mental shortcuts” that allow you to make difficult choices, she says. Throughout the pandemic, Wilson has deferred to CDC guidance whenever she has to make a decision—which, these days, means she feels pretty comfortable easing up on precautions.
“I still encourage people to look to the experts for what is appropriate,” she says. “But if you at a personal level aren’t comfortable with that uncertainty…do whatever you’ve got to do.”
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Write to Jamie Ducharme at jamie.ducharme@time.com