Before March 2020, Netia McCray was living her dream career. She worked 60 hours a week in Boston as the founder and executive director of a STEM nonprofit called Mbadika, designing and developing kits and toys for kids to explore STEM projects. McCray taught workshops, traveled to science conferences, and even hosted a web show.
And then one night in late March, she woke up to go to the bathroom and passed out on the floor before ever getting to the sink. The next day, her lips turned purple. It was getting harder and harder to breathe. A few days after that, her partner developed a cough. Alarm bells went off in her head.
The PCR test that took her more than a week to obtain came back negative, but McCray still struggled to breathe, felt immense chest pain, and could hardly climb the flight of stairs that took her to her bedroom. Something was wrong, but all the doctors she visited couldn’t tell her what it was. They suggested she try yoga to relax or take Tylenol to manage her pain.
“Every time I tried to reach my doctor, she would claim, ‘Oh, can you breathe, then you’re fine.’ And I’m like no, I can’t breathe. That’s why I’m calling you,” she said.
It took McCray 18 months from the date she first began experiencing symptoms to confirm she’d contracted COVID-19. During that time, she went from doctor to doctor in search of a medical team that recognized and validated her symptoms until she was finally able to confirm her infection through an antibody test.
“In those 18 months since my initial viral infection started, I did not realize how painfully slow medical science can be when you’re going through things and trying to figure it out. Because it can mean life or death for you.”
Today, McCray is one of the millions of people around the globe who suffer from long COVID, the term for people who have consistent symptoms after being diagnosed and recovering from COVID-19. In the months since, she has battled brain fog, short-term memory loss, developed a seizure disorder, microclots that led to a heart attack, and had multiple strokes. McCray is back to work, but she’s made significant cuts to her work hours to manage her symptoms.
Data around long COVID isn’t exact, but an April 2022 study from the University of Michigan found up to 43% of people who contract COVID-19 will develop long COVID.
As people around the world entered their third year living with the virus, officials rolled back restrictions in an attempt to “get back to normal.” Employees are going back to the office, capacity restrictions on indoor events have waned, vaccine requirements are dropping, and mask mandates are scarce to find. In April, the Transportation and Security Administration stopped requiring masks for air travel.
As hard as it is for many people to acknowledge, the pandemic is far from over. COVID-19 infections are on the rise again, and California reported a 30% increase in cases during the first week of May. In New York, there are about 2,500 new cases every day—up from 600 new cases daily in early March. The White House also recently announced that up to 100 million people could be infected by COVID-19 this fall and winter, increasing the likelihood that millions more people could develop the chronic condition.
While vaccines reduce the risk of contracting COVID-19 and developing long COVID, most studies surrounding long COVID cases among vaccinated people are not conclusive. A study by the U.S. Veterans Health Administration found that people who were vaccinated only had a 13% lower risk than unvaccinated patients of having symptoms six months later.
“I already have a suppressed immune system due to Covid,” McCray said. She’s now one the estimated 3-4% of immunosuppressed people in the U.S., and with dropping protections, she worries about “almost unavoidable” exposures.
After becoming immunocompromised McCray had to become her own advocate, navigating the hoops and hurdles of the medical system to find a care team that would at the very least listen to her, even if they didn’t all believe her symptoms. It was those who had loved ones with long COVID symptoms who were the few who believed her when she said something was wrong. When medical professionals and federal guidance couldn’t, or wouldn’t, help her, she turned to long-hauler support groups online where folks across the country helped each other identify and manage their symptoms.
“I now know people I went to high school with who are in nursing homes just because of long COVID, who can hardly talk and walk,” McCray said.
The devastation that COVID-19 has brought to Black and brown communities makes the limited precautions in public spaces especially frustrating for McCray. When adjusting for age, the risk of dying from COVID-19 is twice as high for Black, Latinx, and Indigenous people, and Black and Indigenous Americans have the highest rates of hospitalization from COVID-19.
Given the stakes, McCray can’t accept a more lax attitude toward COVID-19 precautions and wants people to continue to try to protect themselves.
“A lot of minorities, women, people who are caregivers, or caretakers of children, or immunocompromised folks, we’re all living in this reality of, ‘We know so and so is still in the hospital this week,’” she said. “I don’t know what reality you’re living in, but I know people in apartments and on public transit are gonna have a rough, rough time if we don’t put these protections back in place.”