The pandemic gave people with chronic illnesses a sense of belonging. Now they’re back to feeling like outsiders.
A trip to Target already felt life-threatening to Chelsey Gomez before the pandemic. Gomez was diagnosed with Hodgkin’s lymphoma, a blood cancer, less than four years ago. An oncologist told her that if she didn’t seek treatment right away, she might have just seven months to live.
Since minor illnesses like the common cold could cause her to become seriously ill, Gomez often wore a mask in public, eliciting strange looks from other residents in Florida.
“They didn’t think, ‘Maybe she just has cancer.’ They would stare at you like you were weird,” Gomez said. “A lot of times that stopped me from wearing one because I didn’t want people to stare at me more. I already had no hair.”
Her husband did the grocery shopping so she wasn’t exposed to germs. When her daughter, Luna, came home from preschool, Gomez would immediately toss her clothes in the laundry and give her a bath.
“We have neighbors that have little children the same age as my daughter. We had to keep her away from them in case they had a cold,” Gomez told Insider. “It was heartbreaking because she’d hear them outside and ask, looking at me, ‘Why can’t I go out there?'”
The pandemic was an equalizer in that regard. Come spring 2020, the entire country had to stay indoors, cancel playdates, and don masks in public. Two years later, public venues are open again, vaccines are widely available, and the Centers for Disease Control and Prevention no longer recommends masks for most US counties. The Omicron subvariant BA.2 threatens to drive up cases again, but public-health experts generally agree that COVID-19 isn’t the threat it once was — at least to vaccinated people.
For chronically or critically ill people, however, returning to mask-free life is a riskier prospect. Insider spoke with seven of these individuals, some of whom said they’re starting to feel like outsiders again.
‘Now everybody has to wear a mask’
While the pandemic put chronically ill people at high risk, it also normalized precautions they were taking to avoid viruses prior to COVID-19. For the first time, their friends and family started adopting the same behaviors, like washing their hands frequently or canceling travel plans to avoid getting sick.
“There was a time when I was ashamed of wearing a mask. I didn’t want to wear one, but now everybody has to wear a mask,” Spiller said in January, before the CDC relaxed its restrictions.
Many chronically ill people have formed close bonds with friends or family who take the pandemic seriously.
“For the most part, the people that I do have come over are a little more isolated,” Angel said, adding, “Maybe they work from home or live alone or are just not out and about socializing and doing indoor dining.”
Angel has had COVID-19 twice already — once in September, and again in December. The first time, she had trouble walking, talking, and breathing, she said. She wound up in the hospital and eventually recovered, but she fears getting sick again. Her friends and family are hyper-aware of her situation, she added, and are “totally willing to test before coming to see me.”
“I don’t think we’re an island anymore like we used to be. At this point, everybody has preexisting conditions,” Charlene Spiller, a 54-year-old hairstylist with multiple myeloma, told Insider.
Immunocompromised people still faced unique hardships during the pandemic
The pandemic was, of course, difficult for people with life-altering illnesses. Many of them haven’t felt comfortable peeling back personal safety precautions when COVID-19 cases drop or temperatures start to warm.
“There always feels like there’s some element of risk, even when you just see one other person. That’s something that most people that aren’t immune-compromised don’t even think about,” Ali Moresco, who lives in Nashville, told Insider. Moresco has specific antibody deficiency, a condition that severely compromises her immune system.
Isolation also takes a heavy toll on people in physical pain, especially those undergoing grueling treatments or procedures.
Spiller underwent a stem cell transplant at the height of the pandemic’s first wave in May 2020. It was a lonely experience. She lives by herself, and her friends and family couldn’t visit her during her recovery. She was depressed a lot, she said.
“I was in a lot of pain and sometimes I just felt like I was not going to make it out of that mindset,” Spiller said, adding, “I’d never had those feelings before, ever.”
A positive COVID-19 diagnosis also threatened to delay people’s treatment.
“I was getting chemo every week. I had doctor’s appointments all the time. If I had to cancel any of that, that was life and death, too,” Kate Hendricks Thomas, a 42-year-old Marine Corps veteran with stage 4 breast cancer, said.
As masks come off, people with chronic illness feel like outsiders again
Earlier in the pandemic, people wore masks, in part, to protect the most vulnerable. But mask-wearing has recently made some immunocompromised people a target of scrutiny.
“I’m guessing that as people wear them less, I will feel more and more like an outcast and more judged,” said Alicia Angel, a 38-year-old songwriter who has myasthenia gravis, a chronic autoimmune disorder that can result in extreme muscle weakness.
Gomez told Insider she’s encountered several side-eyed glances and eye rolls lately in response to wearing a mask in public. She started making buttons that read, “I’m wearing a mask because my immune system sucks!” or “My oncologist thanks you for wearing a mask!” to silence the naysayers.
“I hate that I even have to sell one of these buttons, honestly, because why do we need these?” Gomez asked. “Why can’t people just be kind and at a minimum mind their own business?”
Chronically ill people have also had to endure unsympathetic language suggesting their lives aren’t as valuable as those of healthy people. In January, CDC Director Rochelle Walensky said it was “encouraging news” that most COVID-19 deaths occurred among “people who were unwell to begin with.”
“We keep hearing this narrative of, ‘Oh, don’t worry, it’s only people with preexisting conditions, or it’s only the elderly that are in hospitals or that are getting sick.’ That is very hurtful as somebody that’s immune-compromised,” Moresco said.
Walensky later met with disability groups to apologize. In a statement, the CDC said her comments were “hurtful, yet unintentional.”
Chronically ill people are finding their own version of normal
As many Americans dive headfirst back into normal life, immunocompromised people must reassess what risks they’re willing to take. Most are still wearing masks or avoiding public indoor settings.
“I’m not going to a restaurant or a bar or anywhere that’s busy like a mall. Things like that still make me incredibly nervous,” Moresco said, adding, “I know some people would probably hear that and be like, ‘You have to live your life, come on, we’re over this.’ But for people like me, it’s just not really a choice.”
For people with health challenges, it still doesn’t feel like normal times, Carol Gee, an Atlanta-based author in her 70s, told Insider. Carol has
heart disease. They’re still masking up in public and limiting their interactions with other people.and is insulin-dependent. Her husband Ronnie, also in his 70s, has prostate cancer, diabetes, and
“I hugged and shook hands for 40-something years, so it doesn’t bother me” to avoid those activities, Ronnie said.
But the couple isn’t putting life on hold. They’re grocery shopping and seeing friends on occasion.
“I don’t want to let anything make me so afraid that I can’t live my life,” Carol said.
Other immunocompromised people are willing to take greater risks. Gomez recently attended her daughter’s school field trip. There was an option to drive yourself or ride the bus with the kids, she said. Gomez chose the latter.
“I put two masks on and got on the bus with her and it was a great day,” she said, adding, “I was willing to take that risk because of my daughter. God forbid, if something happened to me, I want her to remember that trip and not just a sick mom.”
Many chronically ill people said they were willing to forgo routine activities, like a trip to the store, in favor of meaningful events like vacations or family gatherings.
“Every once in a while, it does get to the point where you’re just like, ‘I just have to live a little,'” Angel said, adding, “What if I do get it again and that is the end of it for me? That’s why I wanted to travel, because I was like, ‘What if I spent the last two years in my apartment, so isolated and then I get it and I die anyway?'”
Immunocompromised people are also anticipating a return to their own versions of normal life one day. Gomez is looking forward to dining inside a restaurant. Moresco wants to have a drink at a bar with a friend. Angel wants to see a movie or a Broadway show.
Thomas, the Marine Corps veteran, isn’t taking as many COVID-19 precautions anymore. She only wears masks in places that require them. She’s entering hospice soon, and the mental preparations for that feel more important than worrying about COVID-19, she said.
“I’m living on a ticking clock. There’s always that hanging over my head, so I don’t want take it to too far of an extreme where I never see people and I never take a risk,” she said, adding, “At some point, the risk is worth it.”