Susan Scarbro stares down a bowling lane at the distant pins.

She hears a sound that breaks her focus. Was that a cough? Will her mask protect her?

COVID-19 remains a very present threat for the 55-year-old. Scarbro has multiple immune disorders, making her vulnerable to infection.

“Any minute anybody could cough, just incidentally,” said Scarbro, who lives in Sunset Beach, North Carolina. “And that cough could be the one thing that could make me sick.”

Jan. 20 marked the fifth anniversary of the first confirmed case of COVID-19 in the U.S. The virus would go on to kill 1.2 million Americans and disrupt countless lives.

While the pandemic’s emergency phase ended in May 2023, the threat of infection remains a governing force in the lives of people like Scarbro. They protect themselves from the virus with masks and isolate themselves in small family bubbles. Some grasp for unproven strategies — gargling with antiseptic mouthwash, carrying a personal carbon dioxide monitor to check the ventilation of indoor spaces.

In online support groups, they trade research about the danger of repeat infections and cognitive impairment. They miss the empathy they felt during the early days of the pandemic. Some have lost friendships, but they strive to maintain the social ties that are important to mental health.

Scarbro’s bowling league helps her feel connected. But recently, she’s detected more stares and skeptical looks from strangers when she bowls in a mask.

“There was more respect and understanding, but now they’re over it,” she said. “They expect me to be over it, but they don’t understand that even before COVID-19, these were the precautions I needed to take.”

Most Americans have developed some level of protection against severe disease from previous COVID-19 infections, vaccinations or both. But immunocompromised people like Scarbro, who has common variable immune deficiency, must be constantly vigilant. Unlike the flu, COVID has not settled into a seasonal pattern.

“There’s never a time when they can relax a little bit,” said Andrew Pekosz, a virologist at Johns Hopkins University. “That’s a really challenging and exhausting thing to ask someone to do.”

People still cautious about COVID-19 include young caregivers of vulnerable relatives, people with chronic health conditions and families rallying around a loved one.

‘How hard is it to put a mask on?’

Before the pandemic, Bazia Zebrowski, 61, of Newbury, Ohio, dined out, shopped for groceries and took her dog, Shadoh, to the park. When she felt well, she occasionally could get together with friends despite having myalgic encephalomyelitis, a condition formerly known as chronic fatigue syndrome that causes inflammation, immune system problems, fatigue and pain.

Now she keeps close to home, venturing out only for medical appointments. Her husband does the shopping and wears a mask at his workplace.

They have not had COVID-19 and hope their luck holds. Getting sick would be a disaster, she said, potentially triggering a relapse or superimposing long COVID onto her illness.

“I don’t consider myself COVID cautious. I consider myself COVID competent,” Zebrowski said. “Cautious would imply that I have an unreasonable fear of something. I do not have an unreasonable fear of this disease.”

What does Zebrowski miss about pre-pandemic times? “I miss the illusion that people are willing to care for each other,” she said. “How hard is it to put a mask on? It rattles your faith in humankind … (you learn) how little the people in your life understood how sick you were to begin with.”

Trauma is part of the experience of having a chronic illness, said DePaul University psychologist Leonard Jason, who studies myalgic encephalomyelitis.

“Then you’re traumatized by the societal reaction to the illness,” he said.

Protecting a partner

Some people aren’t sick themselves but are taking precautions to protect a family member. Steve Alejandro, 42, of Wentzville, Missouri, calls himself a COVID shielder.

His wife, Ashley Alejandro, 44, also has myalgic encephalomyelitis. “She’s got maybe four good hours a day,” Alejandro said. “There’s not a thing in the world I wouldn’t do to protect those four hours.”

Alejandro changed careers during the pandemic, leaving behind “my whole support system” so he could sell vintage books online from home. His three children — now 20, 18 and 12 — never went back to in-person school after lockdowns ended and are continuing their education at home.

“We’ve really come together,” Alejandro said. “This is a choice that can be made and you can win at it.”

In Miami, Kira Levin is the primary caregiver for her 98-year-old grandmother. She said the thought of getting COVID-19 and risking her grandmother’s health is terrifying.

So, at a July wedding, the 29-year-old was the only bridesmaid and attendee in a mask — an N95 layered with a pretty mask to match the bride’s green color scheme.

“I didn’t take off the mask for pictures and nobody asked me to,” Levin said. “And I felt incredibly grateful for that.”

A new normal

While Scarbro understands that others are ready to return to “normal,” it’s not that easy for her or her family. It’s true for many others with chronic immune illnesses, said Jorey Berry, CEO of the Immune Deficiency Foundation.

“While the rest of the world is able to kind of go back to their regular lives, our community doesn’t have that luxury,” she said.

Scarbro, her husband and children are constantly taking into account other people’s COVID-19 safety practices.

And as the world turns back to pre-COVID life, Scarbro’s family is doing what they can to keep her healthy — but not in complete isolation.

“I feel very scared about the future,” she said. “I know that people are done, and I respect that, but it’s only going to make it harder for me and my family to keep me safe.”