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Devna Bose与Carla K. Johnson
Susan Scarbro gazes down the bowling alley at the far-off pins.
A noise interrupts her concentration. Was that a cough she just heard? Is her mask enough to keep her safe?
COVID-19 continues to pose a significant risk for the 55-year-old. Scarbro suffers from several immune disorders, which increases her susceptibility to infections.
"At any moment, someone might cough without even thinking about it," remarked Scarbro, a resident of Sunset Beach, North Carolina. "And that single cough could be the very thing that makes me unwell."
This month commemorates five years since the initial confirmed COVID-19 case in the United States. The virus ultimately claimed the lives of 1.2 million Americans and significantly altered countless lives.
Although the emergency phase of the pandemic concluded in May 2023, the risk of infection continues to influence the daily lives of individuals such as Scarbro. They take precautions against the virus by wearing masks and keeping to small family groups. Some resort to unverified methods—like using antiseptic mouthwash for gargling or carrying personal carbon dioxide monitors to assess indoor air quality.
In virtual support communities, members exchange findings regarding the risks of recurrent infections and cognitive decline. They long for the compassion they experienced during the initial phase of the pandemic. Although some have seen friendships fade, they continue to work on preserving the social connections that are vital for their mental well-being.
Scarbro finds a sense of community through her bowling league, which brings her closer to her neighbors. However, lately, she has noticed an increase in the number of curious glances and doubtful expressions from onlookers when she bowls while wearing a mask.
“She mentioned, ‘There used to be more respect and empathy, but now it feels like they’ve moved on. They want me to be past it, but they fail to realize that even before the pandemic, these were the necessary measures for me.’”
A significant portion of the American population has acquired a degree of immunity to severe COVID-19 illness through past infections, vaccinations, or a combination of both. However, individuals with compromised immune systems, such as Scarbro, who suffers from common variable immune deficiency, must remain perpetually cautious. In contrast to influenza, COVID-19 has not established a predictable seasonal trend.
"According to Andrew Pekosz, a virologist at Johns Hopkins University, 'There’s no moment when they can afford to let their guard down. It’s a demanding and tiring expectation to place on someone.'"
Who are the individuals who remain wary of COVID-19? This group encompasses young caregivers looking after vulnerable family members, individuals with chronic health issues, and families supporting a loved one. In discussions with The Associated Press, they shared their experiences regarding the difficult balance they strike and the impact of isolation on their mental well-being.
"How difficult is it to wear a mask?"
Prior to the pandemic, Bazia Zebrowski, a 61-year-old resident of Newbury, Ohio, enjoyed dining out, grocery shopping, and taking her dog, Shadoh, for walks in the park. On days when she felt better, she would sometimes meet up with friends, even while managing myalgic encephalomyelitis, a condition previously referred to as chronic fatigue syndrome, which leads to inflammation, immune issues, fatigue, and pain.
Currently, she stays primarily at home, going out only for medical appointments. Her husband handles the shopping and uses a mask while at work.
They have not contracted COVID-19 and are optimistic that their good fortune continues. Falling ill would be catastrophic, she mentioned, as it could lead to a relapse or complicate her condition with long COVID-19.
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“I don’t see myself as being overly cautious about COVID. I view myself as COVID savvy,” Zebrowski stated. “Being cautious suggests that I harbor an irrational fear of something, but I do not fear this disease irrationally.”
What does Zebrowski long for from the time before the pandemic? “I miss the belief that people genuinely care for one another,” she expressed. “Is it really that difficult to wear a mask? It shakes your confidence in humanity … (you realize) how little those around you comprehended the extent of your struggles from the start.”
According to Leonard Jason, a psychologist at DePaul University who has researched myalgic encephalomyelitis for over thirty years, trauma is an integral aspect of living with a chronic illness.
"Then the way society reacts to the illness leaves you feeling traumatized," he remarked.
Safeguarding a partner
While some individuals may not be ill themselves, they are still taking measures to safeguard a loved one. Steve Alejandro, a 42-year-old resident of Wentzville, Missouri, refers to himself as a COVID protector.
His spouse, Ashley Alejandro, 44, is also affected by myalgic encephalomyelitis. “She has around four productive hours each day,” Alejandro shared. “I would do anything to safeguard those precious four hours.”
During the pandemic, Alejandro made a significant career shift, walking away from “my entire support network” to pursue selling vintage books online from the comfort of his home. His three children, aged 20, 18, and 12, have not returned to traditional schooling since the lockdowns lifted and are now engaged in remote learning.
“We’ve truly united,” Alejandro remarked. “This is a decision that can be taken, and success is achievable.”
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In Miami, Kira Levin serves as the main caregiver for her 98-year-old grandmother. She expressed that the idea of contracting COVID-19 and potentially jeopardizing her grandmother's well-being is deeply frightening.
At a wedding in July, the 29-year-old stood out as the sole bridesmaid and guest wearing a mask — an N95 adorned with a stylish overlay that complemented the bride’s green color palette.
"I kept my mask on for the photos, and no one requested me to remove it," Levin stated. "I was truly thankful for that."
'Pandemic-Conscious' Dating
Sisters Jacqueline and Alexa Child from Denver continue to wear masks while attending concerts and enjoying outdoor meals with friends who have a more relaxed approach to COVID-19 precautions.
“We have exhausted all options to preserve our mental well-being and social connections,” expressed Jacqueline, who suffers from an immune condition that heightens her risk of infections. “There’s nothing more challenging than facing disability while feeling cut off from others. Having experienced both disability and isolation, I truly want to avoid that sense of isolation.”
In 2022, Jacqueline, aged 30, and her elder sister Alexa, who is 34, created a dating application specifically designed for individuals with disabilities or chronic illnesses, while ensuring that everyone is welcome to join. The app allows users to include a “COVID Cautious” label on their profiles, indicating their preference for connecting with others who prioritize safety measures. According to the Child sisters, around 10% of their 30,000 registered users opt to add the “COVID Cautious” tag to their dating profiles.
“We didn’t anticipate focusing on this market, but we’re more than willing to embrace it,” Jacqueline remarked.
Alexa mentioned that the precautions initially aimed to safeguard Jacqueline, “but that’s not the focus anymore.” She is now trying to prevent long COVID, which can lead to a lasting disability.
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For Yale University immunologist Akiko Iwasaki, the idea of dismissing the risks of long COVID seems almost inconceivable. Despite extensive research on the virus since it first appeared, she notes that scientists are still baffled by the phenomenon of viral remnants lingering in the bloodstream of certain individuals for over a year after they have recovered from the infection.
Iwasaki continues to wear masks in indoor settings and keeps current with vaccinations.
"I simply cannot risk falling ill and developing a chronic condition," she expressed. "I believe we are truly at a point where we can enhance our understanding of the disease and assist millions in need."
A fresh standard
Although Scarbro recognizes that many people are eager to go back to “normal,” her situation, along with her family's, is far more complicated. This sentiment resonates with numerous individuals suffering from chronic immune conditions, as noted by Jorey Berry, CEO of the Immune Deficiency Foundation.
"She remarked that unlike the rest of the world, which can return to their normal routines, our community lacks that privilege."
Scarbro, along with her husband and children, is always mindful of the COVID-19 safety measures that others are following.
As the world gradually returns to its pre-COVID state, Scarbro's family is taking steps to ensure her health—though they are not completely isolating her.
“I’m really anxious about what lies ahead,” she expressed. “I understand that people have reached their limit, and I respect their feelings, but this will only make it more difficult for my family and me to ensure my safety.”
