Five years ago, the World Health Organization first declared the novel coronavirus a global pandemic. The announcement led to an unprecedented moment for our society: lockdown. Restaurants were shuttered, millions became unemployed, and millions more died from this unknown, terrible disease. New York City, where I live, was the first U.S. epicenter. Headlines blared about the hospital overflow sites on Navy ships and makeshift morgues on Randall’s Island. The sirens, all over the city, keened along in a dissonant strain.
Those of us who could work at home sat on our couches, scrolling through the horrors, watching television, getting cocktails to go, and disinfecting groceries. These were the placid yet unsettling days that walling yourself off from the world brings—fear, uncertainty, and isolation. For many, this was the central trauma of this period. But for myself and hundreds of millions of others globally, the trauma wasn’t only about these beginnings, it’s about the horrors we still experience today.
About a week into lockdown, my life changed forever. I started to feel short of breath. By this point, I’d familiarized myself with Covid symptoms and about the millions of people getting sick, on ventilators, dying. At the time, only patients in hospitals could access Covid tests, but my telltale symptoms left little doubt. I logged into a telemedicine appointment with my doctor, who agreed with my suspicion and prescribed me a little red albuterol inhaler that would become my lifeline for the next two weeks.
It was a scary sensation, sometimes more specifically referred to as “air hunger,” which feels more accurate. Your breaths are shallow and incomplete. But aside from a few days spent counting down the minutes before I was allowed another puff of albuterol (every four to six hours), my symptoms were mild. I never ran a fever. Within two weeks, I thought I was better.
I couldn’t have been more wrong. As I wrote for this magazine, in June 2020:
Then something strange happened: My toes started changing color. Every night, they’d become red, hot, and ungodly itchy. During the day, they’d be purple, as if they belonged to a corpse. Scheduling an appointment with a dermatologist for an unrelated foot problem in the middle of a pandemic felt ridiculous—hundreds of people were dying every day in New York at that point. But whatever this was—a rash? Gangrene? Creeping death?—got worse, causing many sleepless nights in which I would spray my burning feet with ice-cold water at 3 a.m.
When I wrote that piece, the headline posed the same question I’d spent all my sleepless nights agonizing over, “Will my Covid Symptoms Ever End?” At the time, I considered the question to be rhetorical and the answer obvious—it would end eventually, if not soon. At that point, I never could have imagined I’d still be experiencing consequences from my first Covid infection. Five years later, however, that question seemingly has an answer: No. Now I find myself marveling less about Covid’s insidious initial reach and more about the degree to which those of us suffering have been shunted to the side.
From June 2020 until vaccines became available to the general public in April 2021, my “fire feet” persisted. I tried different medications, ointments, and supplements. I could only walk a few blocks each day. During the George Floyd protests in summer 2020, I relied on Citibike. Yet by that winter, I would no longer be able to ride a bike, and today, I still can’t.
When the “fire feet” subsided, the leg cramps began. A strange tingling up and down my legs that felt like hundreds of mosquitoes biting my skin concurrently. I experienced the worst of these symptoms in the first half of 2021. I’d moved into a crappy third-floor walk-up with a persistent mold problem. I carted around a plastic tub I’d ordered online that each night I filled with cold water. My body ached. Six months after that, my mouth started itching and my ears and nose and cheeks turned bright red and hot after eating. I had to go on a special “low histamine” diet that I still follow to some extent. I take multiple antihistamines a day to control my reactions.
Fall 2021 brought some relief, as I started to learn what combinations of medications and supplements helped me function better. I never imagined I’d come to rely on 15 to 20 medications per day just to feel somewhat normal. I still have to ration my steps. I still feel physically ill the day after I do too much, walk uphill, exercise, or dance at a wedding. And now, I am still plagued with the fear of an ongoing pandemic while many have the luxury of pretending it’s over.
Though the public health emergency has been declared over, the World Health Organization still says we are in a pandemic. This winter, over 1,000 people still died per day from Covid. I certainly feel the impact of the pandemic, every day. Today, people say “during the pandemic” when they mean “during lockdown.” This distinction—or lack thereof—upsets me; though I try to remember that people don’t mean to offend. This is the product of ignorance and misinformation, coming from the top down. It’s not lost on me that if the Trump administration had declared a lockdown a few days earlier, maybe this wouldn’t have happened to me. Maybe I would have my pre-Covid life back by now. Maybe I’d be one of the freewheeling many, living in seeming ignorant bliss despite the millions dead and disabled from Covid. A tiny twist in my tale might have been enough to alter my fate. But even if I’d have ended up standing on the bright side today, that wouldn’t change the fact that a shadow still remains.
This goes far beyond my personal health relative to others. This is a story about public policy and the nature of citizenship, as well. This is about the health of a nation, and the world, and the lessons we could have learned. Five years later, it is sad to think about what could have been. For a moment, we had universal basic income and health care. For a moment, we banged pots and pans each night to thank our health care workers. For a moment, there was a sense that we cared about the vulnerable. There was a moment of solidarity, somewhere within the trauma.
Now, things couldn’t feel more different. After Trump’s initial disastrous response, Biden ran on the promise of a course correction. He too ended up following the whims of industry rather than science. It was seemingly impossible to truly come back from the initial politicization of Covid that demonized mask wearing, and precautions were never presented in a way that the public found palatable. The Democrats decided forgetting Covid was more important than using the experience to build something better, the way Britain’s National Health Service arose out of the ruins of World War II.
Any lesson we seemed to learn early on was seemingly unlearned. Now, five years later, we are back with Trump, who is cutting off National Institutes of Health research into long Covid as randomized-control trials finally get off the ground, and threatening Medicaid cuts when, for a moment in 2020, the fantasy of universal health care coverage felt possible. And it was Biden who oversaw the largest disenrollment from Medicaid in 2023, after ending the public health emergency and the temporary Medicaid expansion that came with it.
Five years later, there are still no approved treatments for long Covid. There have been many scientific advancements, and I’ve learned in many ways to accommodate my symptoms and have a regimen in place that allows me to cosplay as normal in most situations. I am considered a mild case, yet my life is forever changed. There is still no cure. And without research and attention to the subject, there won’t be.
The public still remains at risk, though they’d prefer not to hear about it. As Miles Griffis recently wrote for The Sick Times, an outlet he co-founded in response to the long-Covid crisis, “The pandemic—and the world’s failure to respond to it adequately—has led to an unsafe society for disabled and immunocompromised people. Many experience deep grief: the loss of friendships, family relationships, marriages, and bodily safety in a hostile society that ignores the ongoing pandemic.”
Those of us who don’t have the privilege of ignoring Covid know about the numerous studies that show the kind of damage Covid can cause on multiple organ systems. The young people having heart attacks. That people aren’t making connections between Covid infections and worsening immune systems feels unfathomable to those of us suffering from long Covid. People ask, naïvely, “Why do I keep getting sick?” Somehow, they don’t make the connection. Denial is a strong drug.
It’s a strange, pervasive amnesia. Publications erroneously refer to “immunity debt,” while looking past the fact that we’re all getting Covid over and over, damaging our immune systems, and it’s being treated as an innocuous fact of life. Those of us who want to take any extra steps to protect ourselves have been largely abandoned. Wearing masks in crowded spaces is rare, mocked, and in some cases even banned. Any kinds of commonsense precaution like air filtration have been shoved on the back burner or worse. The vulnerable are on their own—and there’s little reason to believe that our ranks won’t grow.
It’s galling that the United States could suffer such a trauma, only to not take any real permanent steps to—to borrow a phrase—build back better. Today, instead of having come through the experience with greater empathy and strength, we are actually in more danger of zoonotic diseases than ever before. As the Trump administration reverses climate protections, exits the Paris climate accords, and lets global warming continue unabated, there will be more pandemics, like bird flu—which once again seems like a crisis that authorities will willfully ignore until they can’t any longer.
The Trump administration has also blocked access to CDC data—and if we don’t know rates of Covid or other illnesses, then we can’t do anything about it. Public health is in dire straits, as anti-vaccine rhetoric gets more authority with RFK Jr. at the helm of HHS. Preventable diseases that were eradicated years ago like measles are, as they say, so back, baby.
It’s hard in a time like this to feel any semblance of hope. Yet dogged advocates and scientists in the long-Covid community remain at their posts, providing vital research, some of which is funded by private benefactors. We’ve realized in the past years that long Covid has many subtypes. There won’t be a single one-size-fits-all cure, especially if funding dries up. Even under an administration like this one, the momentum can and must be kept alive. People with long Covid belong in the ranks of any kind of left resistance, rather than demonized, mocked, or shunted to the side.
There is no justice without health justice for everyone. A quarter of the population, and growing, are disabled. And it bears repeating, as Tom Scocca wrote in 2023, that “the able and the disabled aren’t two different kinds of people, but the same people at different times.” In acquiescing to this status quo, we leave ourselves and our loved ones vulnerable to its consequences.
