'Treated like a pariah': 11 COVID-19 survivors reveal what they want people to know

It can take months to recover. People assume it's your fault and treat you differently. This is what COVID-19 survivors want you to know.

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/ Source: TODAY
By Maura Hohman

For many people who've survived COVID-19, the experience with the virus creates long-lasting trauma, even though they're the fortunate ones.

Contracting the coronavirus can lead to social stigma, and symptoms can persist for weeks to months. For many people living through this, sharing their story is the only way they feel validated as they wait for researchers to wade through the unknowns.

Here's what 11 survivors of COVID-19 want you to know about their experience.

It's hard to grasp the severity of what you're going through.

Stephen Lopez, a 69-year-old from Pleasantville, New York, needed at-home oxygen even after he was discharged but is now recovering well.

Stephen Lopez didn't think he needed to be admitted to the hospital, but he's glad his family convinced him otherwise.Courtesy of Stephen Lopez

"When I first got symptoms it was primarily a cough. A week later ... it suddenly took a turn for the worse. My temperature spiked to 104, and I became somewhat delirious," he told TODAY via email. "My wife shepherded me into an emergency room which, after initially being declined from, admitted me the next day. If I did not have family around I may have simply stayed home until it was too late to do anything."

"I had no idea how sick I was and don’t remember much from the several days before and after being admitted," he said.

The coronavirus shouldn't be about politics.

Two months ago, Jody Ross, 50, became one of the first 400 people in Minnesota to be diagnosed with COVID-19. Ross, who lives in Minneapolis, told TODAY via email that she still has chest pain and only recently became strong enough to exercise again.

"Because I am so focused on healing, I have chosen to limit my consumption of media. COVID-19 isn’t political for me; it is my lived experience," she wrote. "I am doing my best to be part of the solution ... I would not wish it on anyone."

Don't let your guard down yet.

Diana Berrent, 45, founder of Survivor Corps, an organization that virtually unites people who've had COVID-19, told TODAY that her symptoms began in early March.

"Act as if you are already infected and every single person you could infect is either your best friend or your grandmother," Berrent, who lives in Port Washington, New York, advised. "This is not a time to let your guard down."

She also stressed the importance of doing your own contact-tracing if you think you're sick: "Make sure everybody you know that you could've inadvertently exposed is tested and quarantined. It should be every person’s goal to be the end line of that infection."

Take the pandemic seriously before it hurts you or a loved one.

Mom of two Lisa Markarian, 60, of Lake Bluff, Illinois, told TODAY that she, her husband and daughter were sick at the same time. Two of her close friends died from COVID-19.

"Do people have to have something happen to them to get this?" she said. "I'd hope that even if I was a person who didn't experience the loss that I have and the illness ... I'd take it very, very seriously just for everybody's health ... so we can all get on with our lives, so we can all be well."

It's much worse than the flu.

Lisa Markarian's daughter, 25-year-old Nuvair Markarian, told TODAY via email her symptoms were "so much worse than a common flu," and that she's been struck by how scared people are of her now.

"I started getting questioned after getting it," she wrote. "People in my life asking all of the places I’ve been, last time I was out, specific dates of feeling sick and my symptoms. It didn’t feel like it was coming from a place of concern ... No conversation, just questions. Even though I hadn’t seen them already for a while, it felt like they thought just knowing me meant they would get it."

We need to keep our humanity.

Yvette Paz, 30, who lives in Huntington Beach, California, became a viral star after she posted a Facebook video from the hospital, which got 27,000 views overnight, she told TODAY. She received a lot of support, but the negative responses, including online hate groups, stuck with her.

Yvette Paz is giving back to her community after her coronavirus diagnosis by donating plasma and participating in food drives.Courtesy of Yvette Paz

"The mental drain of that has been just as tough, if not more so, than the virus itself," she said. "The overall message to the entire world is not to lose our humanity ... We’ve lost our ability to empathize and care for one another."

There's a lot of suffering that isn't in the news.

A 46-year-old from Oregon City, Oregon, Jennifer English, stressed that "there’s thousands upon thousands of people isolated at home trying to fight this virus on their own ... People understand that people are dying because they see it on the news, but they don’t see us in the middle ground who are struggling so much. "

When Jennifer English went to the emergency room for her COVID-19 symptoms, she was treated "like a pariah" by medical staff, she told TODAY.Courtesy of Jennifer English

Her own experience, she told TODAY, involved being treated poorly by medical professionals, which made her feel so much worse.

"The first time I experienced (the stigma) was talking to my doctors," she said. "They made me feel like a pariah … It’s like people almost think that it’s our fault that we got sick."

If you get sick, advocate for yourself.

Abby Steiner, 35, a psychiatric nurse from Omaha, Nebraska, told TODAY that her medical background altered the way she was treated.

"I can’t imagine people going through this and not knowing what I know," she recalled. "Nothing against the doctor, but they didn’t really know what to do or say ... Find a way to advocate for yourself, and explain what’s going on and not let up on it."

You can get sick even if you take precautions.

Mark Kauzlarich, a 29-year-old in Brooklyn, New York, believes he was one of the first photojournalists to be infected with the coronavirus, and he worried that people he worked with would "hold it against" him and "say I took risks or couldn't be trusted," he told TODAY via email.

"So I wanted to say it loud and clear, (I did) all the things ... that I was supposed to do, and I still got sick," he said. "I wish people would make a conscious effort to remember that there's a human behind every mask, story, illness and death."

Researchers and doctors are trying their best to find answers.

Dr. Anna Marie Chang, 38, an emergency medicine physician in Philadelphia, knows what it's like to be hospitalized for COVID-19 and work on the front lines. She stressed to TODAY that the research coming out, even if it seems contradictory, isn't "misinformation."

"This is the fastest, in some ways, that I've seen science move," she said. "As we get more studies and results, things are going to change. It's important for people to realize nobody is trying to hurt or trick anybody else. We're learning information as quickly as the public is."

Be grateful.

For Lukus Estok, 36, his perspective on COVID-19 is defined by living in New York, New York.

Lukus Estok wants people outside of New York City to be grateful their communities weren't affected so severely by the pandemic.Courtesy of Lukus Estok

"From my perspective, there are two types of places in America: places who have been hit hard by the virus and places that should be grateful that they haven’t been," he told TODAY via email. "I want the general public to know how extraordinarily fortunate most of them are, not to have lived in the heart of the COVID-19 epicenter. The deaths. I really don’t know what to say."