a collage with two medical professionals sitting on the floor looking exhausted. behind them is a heart monitor with a gas tank gauge showing on empty.

Broken Medicine

What Happens When the COVID Empathy Runs Out?

As the pandemic has raged on, underlying problems within the American health care system have been exacerbated, and health care workers are feeling the effects.

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As a busy emergency room nurse, Ellie Navidson was on the front lines of the Covid-19 pandemic. When Navidson contracted the virus in early March 2020, she stayed home, where she stayed sick, and kept getting sicker. In addition to “brain fog” and fatigue, she experienced shortness of breath and an increased heart rate, all of which kept her from working. She exhausted her paid time off (PTO) and Family & Medical Leave Act (FMLA) allowances. For three or four months, she thought she was going to get better. When she didn’t, she quit her job, which made accessing unemployment impossible.

Fifteen months later and diagnosed with Long Covid, she lives in a gap between unemployment and the one to three-year wait she’s expected to make in order to claim disability. To make ends meet, she gave up her apartment, moved in with family, and started a GoFundMe to ask generous friends and strangers to contribute to her car payment and cell phone bills. She raised a total of $6,871, which is significant, but not enough to bridge the gap between giving up her employment—and subsequent health insurance—and receiving disability. “I’m terrified for the rest of my life,” she says. “Not just medically but financially.”

“We’ll come to a point where there won’t be as much sympathy around Covid, and we’ll be casualties,” she says of the nurses who worked the early days of the outbreak. “We’ll go from heroes to pariahs.”

In the early months of the pandemic, health care workers were on the frontline of defense. They were applauded as they reported for work and as they left the hospitals after their shifts. Their resilience was praised as they faced shortages of personal protective equipment (PPE) and ventilators to help keep their patients alive. “We heard a bunch of rhetoric around people being heroes, and that’s as far as it went,” Navidson says. But, as the pandemic has raged on, underlying problems within the American health care system, such as hospital underfunding and employee burnout, have been exacerbated, and health care workers are feeling the effects.

Ten thousand healthcare workers have tested positive for the coronavirus, although that number has not been broken down by role or title. The American Nurses Association has counted 79 nurses who have died from the disease. And, as the emergency phase of the crisis continues, a mass exodus is occurring as up to 30% of health care workers claim to be considering leaving the profession. Among nurses, that number spikes to 43%. They’re reportedly leaving the profession either from exhaustion and demoralization, or to take temporary positions with travel nursing agencies where they can command a lot more money than they were in their staff jobs.

Navidson didn’t want to leave her job. “It’s a really beautiful profession,” she said. “I loved it. I loved taking care of people..” But, the physical demands became too much, as did the amount of paid time off she could take.

“They had me use my paid time off rather than have some kind of system in place for taking care of people who get sick at work,” she said. “They told me that they wouldn’t pay me outside of that because I couldn’t prove that I got sick at work.”

Proving where she contracted the virus was nearly impossible, especially since she contracted it very early on. It’s also a problem of the past, as now she struggles to prove that she continues to suffer from it. She did meet the criteria for a Long Covid study at Northwestern University, but even as clinical research studies pop up across the United States, some within the medical community are hesitant about the reality of Long Covid.

“You get the sense that long-term Covid is a modern-day diagnosis of female hysteria,” said Diana Berrent, founder of Survivor Corps, a grassroots community of 150,000 members who are dedicated to collecting data from and advocating for Long Covid patients. Berrent was an early Covid-19 case. She and her family tested positive for the virus in March 2020.

Berrent was fortunate not to be hospitalized. “I’m a better spokesperson than an example,” she said. She made it through the virus, and kept a video diary for The New York Post.

Pretty soon after, she formed Survivor Corps. “I started Survivor Corpos with the mission of mobilizing an army of survivors to donate their plasma and to support science in every way in which they were qualified to volunteer—for studies and trials,” she said.

According to Berrent, the most reported symptom of Long Covid is fatigue. But, that’s not the only symptom keeping people from returning to work. Some Covid survivors have experienced drastic personality changes that come in waves, as well as fainting spells from blood pressure drops. Brain fog, or cognitive delay, that makes it hard to recall vocabulary can be frustrating for Long Covid sufferers, and might make it harder for them to complete tasks that once took them much less time.

“I called the shed behind the house ‘the little garage,’ because I could not think of the word ‘shed’ for 24 hours. I vacuumed the house and had to take a three-hour nap,” Navidson said about her symptoms of Long Covid.

In the meantime, Berrent mentions that Survivor Corps has members who are homeless, who have sold their car to afford medication, who have completed suicide after experiencing ongoing neurological issues.

“People are suffering,” Berrent says. “The vast majority of people are not hospitalized for Covid. The standard of care remains the same now as it was in March 2020 when I contracted Covid.”

And yet, the world has changed drastically since early 2020. Covid survivors are experiencing symptoms from Long Covid even as doctors are dismissing those experiences. The health care industry is undergoing a massive shift. As we continue on with little change to systems or standards of care, people are getting left in the lurch.

“I’ve got people in my life saying, ‘It will work out,’ and ‘You’ll get better,’ and I appreciate where that’s coming from to a point,” Navidson says. “And also, I might not get better. Things don’t work out for people in this country every day.”

Navidson is working with an attorney to help expedite the application process that may provide disability benefits. Those benefits will cover survival basics, though. She does not expect to return to her former standard of living. And, her lawyer tells her that the process takes one to three  years, but gives no instruction for how she can support herself in the meantime.

“GoFundMe is not the solution to a national or global tragedy,” Berrent says. “We need institutional support.”

“In February, federal funds were released to the National Institute of Health (NIH) to study Long Covid. Not one individual grant has been rewarded.”

“We can’t wait to go at the pace of NIH,” she said.

In July, the Biden Administration announced their plan to expand disability resources and protections to cover people with Long Covid. Analysts agree that disability resources need expansion for a number of reasons, but the question remains whether or not the process to access disability benefits can handle the sudden surge in new applications. Like the health care system, the infrastructure may not hold. Wait times for disability determinations can be unbearable for those who need immediate aid. Prior to the pandemic, 110,000 persons passed away in 11 years waiting for their disability hearings. Over five years, 50,000 declared bankruptcy while waiting. Evictions, job loss, and chronic illness take a toll on individual and collective mental health. Exacerbated by the death toll, decreased social interaction, economic uncertainty, and fear of contracting Covid-19, more people are reporting symptoms of anxiety and depression. Adding the stress of navigating the gap between applying for disability benefits and receiving those benefits can create a distressing toll on the overall health of applicants.

Berrent believes there needs to be immediate action, because this is the greatest war we’ve ever waged. “It is our civic duty to have empathy,” Berrent says. “We do not leave our wounded on the battlefield. That’s not who we are. That’s not what we do.”

“We need the money from the NIH released to scientists immediately,” she says. “We need access to long-term Covid Care Centers. We need to educate general practitioners, and institute interim in-patient facility models like a rehab center.”

“I think that the hero rhetoric has always been a false narrative that our society is using to make themselves feel better about asking talented and generous people to put themselves in harm’s way so that they can go on living life as normal,” says Navidson. “I shouldn’t have to put my entire life behind because I got sick taking care of people.”

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