Susan Scarbro bowls while wearing a mask in Little River, S.C. on Jan. 3, 2025. (AP Photo/Laura Bargfeld)2025-01-15T14:00:39Z EDITORS NOTE: Jan. 20 is the fifth anniversary of the first confirmed case of COVID-19 in the United States.__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.This month marks 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 pandemics 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. Scarbros bowling league helps her feel connected to her neighbors. But recently, shes detected more stares and skeptical looks from strangers when she bowls in a mask. There was more respect and understanding, but now theyre over it, she said. They expect me to be over it, but they dont 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. Theres never a time when they can relax a little bit, said Andrew Pekosz, a virologist at Johns Hopkins University. Thats a really challenging and exhausting thing to ask someone to do.Who are the people still cautious about COVID-19? They include young caregivers of vulnerable relatives, people with chronic health conditions and families rallying around a loved one. In interviews with The Associated Press, they talked about how they manage the trade-offs and the toll of isolation on their mental health. 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-19 onto her illness.I dont 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 has studied myalgic encephalomyelitis for more than three decades. Then youre traumatized by the societal reaction to the illness, he said. Protecting a partnerSome people arent 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. Shes got maybe four good hours a day, Alejandro said. Theres not a thing in the world I wouldnt 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 learning at home.Weve 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 grandmothers 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 brides green color scheme.I didnt take off the mask for pictures and nobody asked me to, Levin said. And I felt incredibly grateful for that.COVID Cautious datingDenver-based sisters Jacqueline and Alexa Child stay masked while going to concerts and dining outdoors with friends who dont share the same level of COVID-19 caution.We have done everything we possibly could to maintain our mental health and our social life, said Jacqueline, who has an immune disease that makes her vulnerable to infections. Theres nothing worse than being disabled and isolated. As someone who has been disabled and isolated, I dont want that isolation part.Jacqueline, 30, and her sister Alexa, 34, launched a dating app in 2022 for people who are disabled or chronically ill, though all are welcomed. Users can add a COVID Cautious tag to their profiles to signal theyre interested in meeting others who take precautions. The Child sisters say 10% of their 30,000 users add COVID Cautious to their dating profiles.Its a market that we didnt expect to target but we happily accept, Jacqueline said.Alexa said the precautions started as a way to protect Jacqueline, but theyre no longer about that. Shes trying to avoid long COVID, a long-term disability.Tossing aside the threat of long COVID is hard to imagine for Yale University immunologist Akiko Iwasaki. Though people have been studying the virus since its emergence, she said scientists still dont know how pieces of the virus can stick around in the blood of some people for more than a year after theyve recovered from the illness.Iwasaki still wears masks indoors and stays up to date with vaccines.I just cant afford to get sick and become chronically ill, she said. I feel that we really are in a position to be able to better understand the disease, to help millions of people.A new normalWhile Scarbro understands that others are ready to return to normal, its not that easy for her or her family. Its true for many others with chronic immune illnesses, said Jorey Berry, CEO of Immune Deficiency Foundation.While the rest of the world is able to kind of go back to their regular lives, our community doesnt have that luxury, she said.Scarbro, her husband and children are constantly taking into account other peoples COVID-19 safety practices. And as the world turns back to pre-COVID life, Scarbros 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 its only going to make it harder for me and my family to keep me safe.___AP videojournalist Laura Bargfeld contributed to this report from Sunset Beach, North Carolina. ___The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institutes Science and Educational Media Group and the Robert Wood Johnson Foundation. The AP is solely responsible for all content. DEVNA BOSE Bose is a public health reporter for The Associated Press, based in Jackson, Mississippi. She covers hospitals, rural health access and disparities, public health funding and other topics that broadly intersect with the health of communities. twitter mailto CARLA K. JOHNSON Johnson covers research in cancer, addiction and more for The Associated Press. She is a member of APs Health and Science team. twitter mailto