When Carmen Palillero had to summon an ambulance for her husband, who had tested positive for the coronavirus, she was worried for his health, of course. But she also worried how she’d explain the late-night 911 call to her neighbors.
Michael J. Stephen, meanwhile, blamed himself for contracting the coronavirus. And when doctors couldn’t figure out why Jonathan Lipman felt so bad, he felt guilty for not being able to keep up with his daily responsibilities.
Despite becoming ill with the virus at different points in the pandemic, all three Philadelphia-area residents experienced an infrequently discussed COVID-19 complication: the stigma of getting sick.
“Stigma can go both ways,” said Laura Murray, a clinical psychologist and senior scientist at Johns Hopkins University’s Bloomberg School of Public Health. “People talk about it as some people stigmatizing others, but we do it to ourselves. What did I do wrong? Where did I go that I shouldn’t have? Did I not wash my hands enough?”
A survey by Hopkins’ National Pandemic Pulse project found that a quarter of adults associate shame with COVID-19. Many said they would be reluctant to admit they had gotten sick and thought people who got infected were at fault for their illness.
That’s unsurprising, Murray said, considering that stigma is rooted in a fear of the unknown.
“It’s basic human nature to try to figure out ‘why’ in everything,” she said. “It’s just that COVID doesn’t make much sense.”
Confronting stigma begins with admitting that we feel a certain way about COVID-19 and being candid with others.
“If we can all communicate that a lot of our behavior stems from fear ... it actually joins us all together,” she said.
Lipman, Stephen and Palillero, who all want to help start that conversation, shared their experiences coping with the social, emotional and mental recovery from COVID-19.
March 2020: Unidentified illness
A few days after businesses and schools shut down last March, Jonathan Lipman, his wife and their two children all started to feel sick.
He suspected the new virus that was in the news. But at the time, only people who had traveled abroad or been in contact with someone who tested positive were being tested for the coronavirus.
“The news was still reporting this as very much like a detective story,” said Lipman, 44, of South Philadelphia. “If someone came down sick, where did they get it? Did they travel to China? Did they meet with someone who had?”
His wife and 12-year-old daughter recovered quickly. But months later, Lipman and his 10-year-old son were still struggling to make it through the day.
Lipman was fortunate to be able to do his job as a strategy and communications consultant for progressive organizations from home, but found he could barely make it to the afternoon before crashing on the couch. He used to look forward to cooking dinner for the family after wrapping up work, but anymore he’d be asleep when his wife knocked on the door at 5 p.m.
Yet every doctor he saw insisted that they weren’t sick because they tested negative, which now is known to be a common finding in early tests. He felt gaslighted, he said.
“It’s incredibly stressful to think that maybe this is just you being lazy, and not you being sick,” Lipman said. “I try to work pretty hard for my family, and not being able to do that was already making me feel pretty terrible about myself. To hear doctors say ‘I don’t think you’re really that sick’ made it feel that much worse.”
Finally, in July, Lipman got the validation and treatment he needed. He looked so sickly when he showed up for a colonoscopy — maybe his illness was a flare-up of his Crohn’s disease, one doctor suggested — that the doctor sent him to the emergency department. A CT scan showed extensive COVID damage, and Lipman was diagnosed with the long-haul version of the virus.
When a doctor at the hospital called his wife to tell her he was being kept overnight for more testing, she cried. Not because she was upset about the diagnosis or scared about what would happen next, but because they finally had a name for the mysterious beast that had been tormenting them for the last half-year.
June: COVID-19 guilt
As a lung doctor treating COVID-19 patients at Thomas Jefferson University Hospital, Michael J. Stephen felt the first few months of the year fly by like a drag car pulling back onto the track just before spinning out. And then, in June, life took another hairpin turn. Stephen, 47, tested positive for coronavirus.
He was diagnosed quickly and spent a few nights in the hospital. It was strange being the patient, but by then the initial frenzy of figuring out how to treat the virus had calmed and Stephen felt safe being cared for by his colleagues.
Stephen always tried to approach his own patients with compassion and put himself in their position. But there was one aspect of being a patient, a COVID-19 patient, specifically, that he’d never considered before: guilt.
“I felt I’d let everyone in my life down. I felt that I had sinned,” he said. “This was my fault — I took my mask off when I shouldn’t have or touched my face when I shouldn’t have and I got sick.”
Stephen’s wife and children got sick, too, and although they didn’t blame him, he blamed himself.
The feeling was unshakable for months after he recovered and entirely unexpected.
“I see people in the hospital and I’ve never blamed anyone for their illness, especially for a virus that’s going around,” said Stephen, who during his convalescence finished his book Breath Taking: The Power, Fragility, and Future of our Extraordinary Lungs, published early this year.
Stephen wanted to get back to work as soon as he could — he thought it would help shake the depression he’d been experiencing — but his return was bumpy.
“People would hear I had had [COVID-19] and they wouldn’t want to come near me,” he said of patients and acquaintances, “It was quite clear they had fear in their eyes.”
Stephen notices fewer side glances and poorly hidden whispers these days. People know more about the virus and are less fearful — or maybe he is just used to it.
November: Fear of being judged
Carmen Palillero reluctantly headed to the hospital in November when what she had hoped was just a cold got so bad that she felt zapped of energy and was having trouble breathing.
When the doctors told her she had COVID-19, she pleaded to go home and not be admitted to the hospital.
Eight months into the pandemic, Palillero, who works at a restaurant in Chestnut Hill, was overloaded with terrifying stories of people dying of the virus, freezer trucks filling up in hospital parking lots. What if she and her husband, who was also developing COVID-19 symptoms, both wound up in the hospital? What would happen to their children?
“That’s what they said — most people who go into the hospital, they don’t come out. They just die in there,” said Palillero, 36, of Philadelphia.
She remembers little of her 12-day stay in the intensive-care unit, aside from the daily phone calls from her husband and two sons, ages 3 and 7, who also contracted the virus.
“Every day my kids would call and say, ‘Are you coming home, Mommy? When are you coming home?” she recalled.
When she got home, she didn’t want her neighbors to know she’d been sick — or that her husband, Agustino Lorenzo, still wasn’t feeling well. One particularly bad night for her husband, who has heart problems, Palillero called 911. On top of worrying about Lorenzo, who was checked out and then released from the emergency department, she agonized over the questions her neighbors might ask, what would happen if she had to admit the family had coronavirus.
The family had been diligent in wearing masks, keeping their distance from others, and Palillero thought that she was constantly sanitizing everything in the house. But her neighbors might think they’d been careless and treat them poorly.
“I thought they might come and throw things at my door,” she said.
One year in
Palillero and Lorenzo are ready to put the episode behind them. Each got a first dose of the vaccine in March.
Stephen is back to his old job with a new outlook. He talks openly about his COVID-19 experience to try to help patients such as Palillero feel less fearful about seeking treatment.
A year since he got sick, Lipman has learned a lot about the coronavirus and about himself.
“For me, a lot of the story of the last year has been a story of trying to get to a place of acceptance,” he said. “As much as it’s been about my physical healing, it’s also been about learning to cherish the many things in my life that are still wonderful and being able to stop judging myself for not being able to heal faster.”
The long bike rides along the river that Lipman used to look forward to are still off the table. But on a recent Saturday, he and the kids walked several blocks to the Italian market for fresh vegetables and fish, then spent the afternoon cooking up a seafood gumbo.
“It was absolutely divine,” he said.