Susan Scarbro gazes down the bowling lane, her attention fixed on the pins at the end.
Suddenly, an unexpected noise disrupts her concentration — could it have been a cough? Is her mask sufficient in protecting her?
For the 55-year-old resident of Sunset Beach, North Carolina, COVID-19 remains a significant concern, especially given her multiple immune disorders that increase her susceptibility to infections.
“Any moment, someone could cough inadvertently,” she expressed. “That single cough might be what makes me ill.”
This month marks five years since the first confirmed COVID-19 case was identified in the United States, a virus that has since led to the deaths of 1.2 million Americans, impacting countless lives.
Despite the emergency phase of the pandemic concluding in May 2023, the risk of infection continues to influence the daily lives of individuals like Scarbro. They exercise caution through mask-wearing and prioritize small family gatherings. Some even explore questionable methods of protection, such as gargling with antiseptic mouthwash or carrying personal CO2 monitors to evaluate indoor air quality.
In online support communities, concerns about the risks of repeated infections and potential cognitive decline are regularly discussed. Many lament the loss of empathy experienced during the initial stages of the pandemic, and some have found friendships fading away. Still, they are determined to keep their vital social connections intact, essential for their mental well-being.
Scarbro’s participation in a bowling league fosters a sense of community, yet she has noticed an increase in disapproving glances from others when she bowls while masked.
“There used to be more understanding and respect,” she said. “Now it feels like people expect me to move on, but they don’t comprehend that even prior to COVID-19, these precautions were necessary for my health.”
Most people in the U.S. have gained some level of immunity against severe illness from former infections or vaccinations. However, those with compromised immune systems like Scarbro must remain vigilant. Unlike seasonal flu, COVID-19 does not follow a predictable pattern.
“There’s never a moment when they can let their guard down,” noted Andrew Pekosz, a virologist at Johns Hopkins University. “It’s an exhausting demand to place on someone.”
Who are the individuals still exercising caution towards COVID-19? They include young caregivers for at-risk relatives, those with chronic health issues, and families extending their support to loved ones. In discussions, they elaborate on how they navigate the difficult balance between social engagement and the mental toll of isolation.
‘Is wearing a mask really that difficult?’
Prior to the pandemic, Bazia Zebrowski, a 61-year-old from Newbury, Ohio, enjoyed dining out, grocery shopping, and taking her dog, Shadoh, to the park. She would occasionally spend time with friends when her chronic fatigue syndrome allowed.
Now, her outings are limited to medical appointments, with her husband handling all shopping while masking at work.
The couple has yet to contract COVID-19 and remains hopeful it stays that way, as falling ill could potentially trigger debilitating relapses or exacerbate her chronic illness with the risk of long COVID.
“I don’t regard myself as cautious; rather, I see myself as competent about COVID,” Zebrowski mentioned. “Cautious suggests an irrational fear of something that’s not the case for me.”
When reflecting on what she misses from the time before the pandemic, she said, “I long for the misconception that people care for one another. How challenging is it to simply wear a mask? It shakes your faith in humanity… (you discover) just how little those around you truly understood how ill you were.”
Chronic illness can often intertwine with trauma, noted DePaul University psychologist Leonard Jason, who has spent over thirty years researching chronic fatigue syndrome.
“You face trauma from societal attitudes towards your condition,” he stated.
A protective instinct towards a partner
While some individuals may not be personally ill, they are taking steps to safeguard vulnerable family members. Steve Alejandro, a 42-year-old from Wentzville, Missouri, refers to himself as a COVID shield.
His wife, Ashley Alejandro, 44, shares his struggle with myalgic encephalomyelitis. “She manages maybe four functioning hours each day,” he said. “There’s nothing I wouldn’t do to protect that time.”
During the pandemic, Alejandro changed careers to work from home selling vintage books, separating himself from his previous support network. Meanwhile, the couple’s three children have continued with home-based education since the lockdowns.
“We’ve really bonded as a family,” Alejandro shared. “This is a choice we embraced, and we’re succeeding.”
In Miami, Kira Levin is the main caregiver for her 98-year-old grandmother. The idea of contracting COVID-19 and jeopardizing her grandmother’s health fills her with dread.
At a wedding in July, she took the unique step of being the only mask-wearing bridesmaid, layering an N95 underneath a decorative mask that complemented the bride’s colors.
“I didn’t take my mask off for pictures, and no one requested I do so,” Levin recalled with gratitude.
‘COVID-Cautious’ dating
Sisters Jacqueline and Alexa Child from Denver opt to wear masks when attending concerts or dining outdoors with friends who may not share their level of caution regarding COVID-19.
“We’ve done all we can to maintain our well-being and social lives,” Jacqueline remarked, noting that she has a condition that places her at risk for infections. “There’s nothing more distressing than being both disabled and socially isolated. I don’t wish to experience that isolation.”
In 2022, the sisters developed a dating app named Dateability specifically for individuals with disabilities or chronic illness, though all are welcome. The app allows users to add a “COVID Cautious” tag to their profiles, signaling their interest in meeting like-minded individuals. About 10% of their 30,000 users incorporate this tag into their profiles.
“It’s an unexpected audience we’re pleased to accommodate,” Jacqueline expressed.
Alexa added that while the initial precautions were designed to safeguard Jacqueline, they have evolved beyond that focus. She is now motivated by the need to avoid the potential for long COVID, a concern that could lead to a lasting disability.
The enduring threat of long COVID is a difficult concept for Yale University immunologist Akiko Iwasaki to set aside. Despite extensive research on the virus since its onset, scientists are still uncertain about how remnants of the virus can linger in some individuals’ bloodstream for over a year post-recovery.
Iwasaki remains vigilant, wearing masks indoors and staying updated with her vaccinations.
“I just can’t risk getting sick and potentially becoming chronically ill,” she stated. “I believe we are on the brink of gaining a better understanding of the disease, which will benefit countless individuals.”
A shifting reality
Although Scarbro acknowledges that many are eager to resume “normal” life, this return feels complicated for her and countless others with chronic immune conditions, according to Jorey Berry, the CEO of the Immune Deficiency Foundation.
“Our community lacks the luxury of returning to previous lifestyles while others can,” she noted.
Scarbro and her family are consistently mindful of the COVID-19 safety practices observed by others.
As the world seeks to reinstate pre-pandemic norms, Scarbro’s family is making every effort to ensure her health remains protected — but without resorting to total isolation.
“I feel an overwhelming sense of fear regarding the future,” she articulated. “I recognize that others are ready to move forward, which I respect, but this shift will complicate our efforts to keep me safe.”