For a blip in history, Yvette Paz possessed the clout to shut down an entire hospital. Her magical power? Coronavirus.
In mid-March, Paz, who had served in the Marines, became VA Long Beach Healthcare System’s first confirmed COVID-19 patient. After the Huntington Beach resident tested positive, the veterans hospital banished all visitors.
“Yep, that was me,” Paz, 30, said. “I felt like a pariah.”
It’s an onus she carries still. Young and fit, Paz fought off her pneumonia without needing a ventilator. But a stigma that came with the soon-to-be common diagnosis continues to shadow her.
“When I called my family and friends to tell them, they had major freak outs: ‘Does this mean you gave it to me?’” Paz said. “I had an incredible feeling of guilt.”
Once home, Paz did not simply bounce back but, rather, continued to suffer extreme exhaustion.
“For weeks, even my mom was afraid to be around me,” she said. “That does a number on you.”
Some people accused her of melodrama. “I had a friend yell at me that I’m a ‘sheep’ falling for a liberal conspiracy.”
Stigmas surrounding disease are as old as humankind. Only a few decades ago, cancer often was dealt with as a family secret. And victims of AIDS – a disease that was most common among gay men — endured the full brunt of prejudice in the 1980s.
“With COVID, we see the stigma cycle present once more,” said Brandon Brown, who teaches public health at the University of California, Riverside.
President Donald Trump’s diagnosis might help alleviate some of that stigma – or not, given that coronavirus is a key political issue.
“I hope the president’s diagnosis is a turning point for many people in their thinking,” Brown said. “Everyone needs to understand they are at risk of getting infected. For many, it seems like the only way to believe COVID-19 exists is to see it personally.”
Ian Barnard, who has studied the AIDS epidemic as director of LGBTQ Studies at Chapman University, is not optimistic that recent events will move the needle regarding COVID’s stigma.
“Already, the president is conveying the message that an individual can conquer coronavirus with sheer willpower,” Barnard said.
But the stigma does not emanate from just one side. Victims of coronavirus report insensitivity from both ends of the political spectrum.
Now back at her job as a security manager on Hollywood movie sets, Paz has noticed that “people immediately take two steps back” when she mentions her coronavirus ordeal.
“The first question is always, ‘How did you get it?,’ as though I must’ve been irresponsible,” Paz said.
Santa Monica art designer Cinzia Carlo, 50, came down with coronavirus in April and still encounters shortness of breath. She believes people reassure themselves of their own invincibility by imagining that COVID seriously impacts only those with compromised health.
“My own family tries to come up with reasons I still don’t feel well,” Carlo said. “My mother asked, ‘Didn’t you have asthma?’ She knows I didn’t have asthma! It’s denial.”
Despite starting their journeys as athletes with no preexisting conditions, neither Paz nor Carlo simply bounced back. For her first two months out of the hospital, Paz felt so weak that she sent her 10-year-old son to live with his father in Northern California.
Like many others who still haven’t fully recovered months after their initial diagnosis, they call themselves the “long haulers.” More than 100,000 people follow the Facebook-based support group Survivor Corps, and a similar group, Long Covid, has 25,000 members.
Those still struggling with lethargy and discomfort say they are even more vulnerable to stigma now than they were when they first were diagnosed.
Three months after he and his wife contracted cornavirus, Huntington Beach resident Jesus Montes lacks the energy and focus to return to his job in construction management.
“I feel pretty good when I get up in the morning. But as soon as I exert myself in any way, I’m wiped out,” said Montes, 46, who spent the last week of June in the hospital.
“I have brain fog. I can’t find words in conversation,” Montes said.
“The scary thing is not knowing how long this will last. There’s no timetable. Am I going to be like this forever?”
Adding to his general misery, Montes shies away from venting about his problems. “It’s embarrassing to tell friends that I have to take a nap after washing dishes,” he said. “And the longer I’m at home, the more I get the sense people think I’m faking it.”
Just by uttering the word coronavirus, his wife said, “People think you are trying to make a political statement. It’s easier to just stay quiet, which only makes the stigma worse.”
While still not 100%, Kristi Montes, 51, has fared much better, returning to her job with an employee training website – where she has blogged about long haulers. Now, she also works as her husband’s caregiver and advocate.
“It’s been really hard on him – Jesus is used to being a provider for our family,” Kristi Montes said.
She worries that the way Trump is handling his own bout of coronavirus could actually amplify some of the negative perceptions faced by long haulers.
“When we first heard about his diagnosis, we thought, ‘Oh my God, this is going to bring legitimacy to our cause,’” Kristi Montes said. “But then he escaped from the hospital in the middle of treatment. If my husband had tried that at Hoag, doctors would have said, ‘No, you’re staying here.’”
By portraying a dangerous illness as already behind him, she said, “President Trump makes people feel bad that they still feel bad. Now his supporters are going to think that’s the way it should be for everybody. But every case is different.”
Barnard of Chapman University said a disease’s intersection with fame will not necessarily ease its stigma. Already, he noted, numerous American celebrities have been hit with coronavirus – starting with movie superstar Tom Hanks.
Nor has COVID’s unfathomable death toll softened its stain.
“What does change the discourse is when people start seeing their friends and loved ones getting the disease,” Barnard said. “Until then, victims are ‘the other’ – whether that person is a VIP or someone in a marginalized community.”
Raynald Samoa, an endocrinologist at City of Hope in Duarte, launched a national podcast to address the stigma of coronavirus in his own at-risk community. Pacific Islanders are dying at a higher rate from the virus than any other racial group statewide.
“Prejudice toward minorities gets worse in a time of crisis,” Samoa said. “With COVID, minorities who tend to work in essential jobs and live in crowded environments are blamed for spreading the virus. When a disease disproportionately affects specific communities, stigma follows.”
Many Pacific Islanders keep coronavirus diagnoses under wraps. “They treat it like a shameful secret,” Samoa said.
Trump’s recent advice to not “be afraid of COVID” nor “let it dominate your life” could exacerbate the humiliation of falling prey to the virus, Samoa said.
“Results vary from person to person – not everyone gets over coronavirus,” he said. “Furthermore, the president has topnotch medical care that is unavailable to most. A single good outcome has never meant we can let down our guard. We have to wear masks, we have to follow CDC recommendations.”
Even after witnessing her struggle with coronavirus – ensued by still-recurring vertigo and nausea – Pamela Kramer’s friends continue to “mask shame,” she said.
“They say stuff like, ‘We’re outside, so why are you wearing that thing?’” said Kramer, 52, a Los Angeles homemaker. “It’s as though I’m purposely insulting them, implying they’re sick.
“The whole topic of coronavirus makes them uncomfortable. They want to think it’s somebody else’s problem.”
However, the outbreak at the White House should serve as a warning that cornavirus is everybody’s problem, Samoa said: “We are intrinsically linked to one another.”