I’m just one of the thousands of Americans who have long-term post-COVID symptoms. This crisis won’t end with a vaccine.
Eight months out from the first frightening peak of coronavirus cases in the US, Americans are facing another dangerous surge of the pandemic. More than 100,000 Americans are in the hospital right now, sick with COVID-19 — the most there’s ever been.
At least 13.9 million people in the US have had the virus. Some fully recovered and bounced right back to their lives, perhaps without even knowing they’d ever been infected. Some — at least 273,000 so far — have died.
And others, like me, have been dragged through an indefinite cycle of headaches, exhaustion, chest pains, and shortness of breath, their post-viral symptoms dragging out for weeks that have turned into months, with no end or relief in sight.
I’m 33 years old. Before I got sick with COVID-19 in April, I was traveling nonstop for my work as a campaign reporter, with 12- to 14-hour days on my feet, sometimes working 10 or more days in a row. In between all that, I’d fit in hot yoga classes and jogs every couple of days.
The best way I can describe how I am now, at the end of this strange, horrible year, is that I wake up most days feeling like I drank a six-pack of beer the night before. Washing the dishes, doing my laundry, or walking a few blocks leaves me in need of a sit-down. It’s a sort of gritty feeling in my body, a woolly feeling in my brain. My breathing is up and down; when I’m tired, I forget words midsentence. I need at least 10 hours of sleep most nights. And if I push too hard, it’s not just laborious — it’s actually painful, from my lungs to my head to the stinging in my eyes.
“Hopefully it will improve soon,” one doctor told me a few months ago. That was the extent of her advice.
Before he got sick in July, “I had tons of energy. I’d never take a break, probably like you,” Junior Ky, a 27-year-old musician and patient benefit adviser at a hospital in Orlando, told me. “And just all of a sudden, it just hit me out of nowhere. I went from feeling 27 to feeling like I’m 207 years old.”
For the past eight months, those of us who have long-term post-COVID symptoms, as well as those who’ve watched loved ones suffer or die from the virus, have seen the president refuse to acknowledge that COVID-19 has killed hundreds of thousands of Americans and made many millions more sick, calling it a “Fake News Media Conspiracy” — even after getting sick himself.
“Don’t let it dominate you. Don’t be afraid of it,” Trump said right after coming out of Walter Reed Medical Center, where he’d been treated with antibodies and steroids inaccessible to most Americans. “You’re going to beat it. We have the best medical equipment, we have the best medicines, all developed recently.”
Of course, hundreds of thousands of people haven’t simply “beaten” the virus. Now, can the US be a place where someone can survive even if they’re knocked off track by a severe illness? The answer, for a long time, has been that it is not.
This country’s disability safety net has been woefully inadequate since well before the pandemic. It’s certainly not capable now of handling the needs of everyone who is currently seeing or will in the next few months see their lives dramatically upended by long-term COVID-related illness.
We have a president-elect who has acknowledged the devastation of COVID-19 and has a clear plan to address the pandemic — but there are still two and a half months to survive before that plan can be put into action. And there’s still no specific plan to federally fund clinics or research to help people with lingering symptoms. Biden’s main offering, according to his team, is to protect health insurance coverage for preexisting conditions and make insurance accessible for those who lose their jobs because of the pandemic. That will make a crucial difference for many people who have long-term symptoms and no health insurance — but even those of us with post-viral problems who already have decent health insurance are struggling to access guidance and care.“Hopefully it will improve soon,” one doctor told me a few months ago. That was the extent of her advice.
COVID-19 has forced me to reevaluate how I think about health, work, vulnerability, and strength. And I’ve wondered whether the pandemic will force our culture at large to make some reevaluations, too. Maybe it will force us to question the American cult of individualism, that idea that doing well or being well is solely down to a person’s willpower. Maybe it will finally make clear that we’re not, as the ads at the beginning of the lockdowns said, “all in this together,” and that our failure to think about collective health and responsibility means many, many people fall through the cracks in a crisis.
By the time we have a vaccine, there will only be more of us struggling to see what the future looks like with slowed down bodies and long-term consequences of the virus, trying to figure out how to live a different kind of life for however long this lasts.
When well-meaning friends express shock at how long I’ve been sick and how supportive my employer has been in giving me time to recover, it rankles. I’m so grateful, but shouldn’t we all have this basic human consideration? To be able to rest and recover instead of driving ourselves to work, potentially at the cost of our lives? But the paradox is that if we don’t just keep laboring through it, we can’t afford to survive.
Every now and then, over the past seven months, I have obsessively gone back through my calendar and counted the days leading up to it. On March 5, I was in LA at a packed rally for Joe Biden, talking to voters about why they’d gotten behind him after their candidates dropped out.
On March 6, I was at LAX, and it had started to sink in that things were getting weird. There were a few people in masks. I looked for hand sanitizer everywhere — and bought four bottles at the only place that still had them, the Magic Johnson store in Terminal 5. On the flight, I sat wedged between two men, chatting with one about news of this virus and prognosticating how bad it could really get. “If you look at what we know, millions of Americans are going to get sick,” he said. “And I guess a lot of people are going to die.” We looked at each other in silence for a moment. The other man next to me sneezed and wiped his nose with his hand.
On March 7, I was in Kansas City, Missouri, reporting on another Biden rally. Before it started, I sat in a crowded restaurant with colleagues eating barbeque with our hands.
Pretty soon after, the campaign trail dissolved, and we all retreated to our respective bubbles. The first weekend I was home in DC, my 12-year-old cousin came over for a sleepover — we watched movies and snuggled on the couch, cooked and ate dinner together, no masks, no 6-foot distance between us. It’s a very specific ache now, to think about the warmth of being that close to someone you love.
On April 4, a Saturday, I went for a run, and that’s when things took a turn. I couldn’t stop coughing — I assumed it was allergies. But for days afterward, the coughing didn’t stop.
By April 8, a Wednesday night, I wrote this email to my editors at 2:51 a.m., during a four-hour-long coughing fit.
Hey just wanted to let you both know, coughing is a fair bit worse tonight. Reached back out to One Medical and will assess what to do in the morning I think.
Hoping it settles but just wanted to make sure you had that and to keep you posted.
I gave them my updated emergency contact number, my aunt’s, just in case.
Looking back, the mild language I was using speaks to how reluctant I was to accept that something serious was happening to me. When I said I was doing “fair bit worse,” I was actually struggling to breathe. When I said I would assess what to do in the morning, I was really considering whether I needed to call an ambulance and go to the hospital right then.
I didn’t go to the hospital in the end, though maybe I should have. Sitting up in bed, I watched videos my mum sent me from a doctor on YouTube explaining how to breathe through COVID coughing and got through the night.The paradox is that if we don’t just keep laboring through it, we can’t afford to survive.
What came next was several months of intense sickness, followed by several more months of getting a bit better and then worse again. It felt like I was being put through my paces with cycles of new and freshly horrifying symptoms every few weeks. For about a month, I was throwing up a lot and had to switch to a bland diet. Then for about two months, I woke up every day with intense chest pain, as if I’d been doing chest presses all night in my sleep. The headaches, fevers, and shortness of breath came and went throughout. Month to month I can see that I’m very slowly getting some energy back — but there’s the constant possibility, which no one has been able to really rule out, that one of these setbacks will be so bad that I actually do end up in the hospital, or worse.
One day early on, I tried to do a YouTube yoga session “for when you’re sick” and ended up a sobbing mess on the mat instead because I didn’t have the energy to get past about three minutes.
I kept pushing myself to get back to work, as though by the force of sheer willpower I could stop being sick. The day Trump left Walter Reed Medical Center, I watched on TV as he puffed up the steps of the White House to the Truman Balcony, where he removed his mask, waved, and saluted.
An obvious lesson I learned this year: You can’t bully yourself into disappearing a life-threatening illness. The idea that the president seemed stuck on, that it’s a question of fearlessness or mental toughness, is just not how this — or any — illness really works.
And yet, as he minimized the disease on national television, I once again minimized my own sickness: I can get back to work in a day or two, I told myself, while I labored to breathe. Just one more day.
So far, there’s an element of randomness in how hard different people are hit by COVID — we don’t yet have the research to tell us why a healthy 33-year-old is knocked down for months while a seventysomething man with other risk factors can bounce back in days (though level of care can certainly be a factor; not everyone has had access to the president’s exclusive, top-tier treatment). Our recovery, too, is not created equal. In a country with no federally mandated paid sick leave or protections for workers who are too ill to work — even in a pandemic, when spreading the disease is a serious public health risk — people with long COVID are forced to choose between resting for their health and a paycheck.
That leads to a deep-seated fear that so many of us, and particularly women of color, have ingrained in us. If you stop working, if you don’t push yourself, if you don’t fight for it, you lose everything.
Some of the questions I asked myself in the first few months I was ill:
Are you really this sick? Why aren’t you tough enough to get back up and keep going? Why aren’t you doing your job as a reporter as the world falls to bits around you? What use are you like this to the people you love and the world at large?
Whether or not they can work is also not an abstract question for the four others with long COVID who I spoke to for this story. Jenn Fryer, 36, from Costa Mesa, California, lost her job as a fashion designer in March, a few months before she got sick. She’s been avoiding seeing doctors, especially because her brother, who also had COVID-19, was hospitalized for a few weeks and landed with a roughly million-dollar bill. He has insurance that will help with those charges, she said, but for her, it’s not an option to rack up medical costs.
“Ever since my brother went to the hospital and got put on the ventilator, I get massive anxiety attacks thinking about it. I’ll just break down crying. I don’t even want to go for a checkup or anything. And I was also scared … because I don’t have health insurance right now,” she said. Jenn said she’s receiving $450 per week, the maximum unemployment she can get in California, which only just covers her rent.
“I mean, it affects your self-esteem, but also it’s our livelihood. And especially right now, it’s not getting any extra help from the government anymore. You can’t really survive that way,” she said, referring to the end of the unemployment funding boost from the federal CARES Act.
She’s trying to apply for jobs, but there’s not a lot out there — and just the effort of going through the interview is sometimes absolutely exhausting.
“I had an interview last month, and I had to put together a whole presentation and do that via Zoom, and it was exhausting. Like afterwards, I felt like I ran like 5 miles. And it’s not just like exhausting physically; it’s exhausting mentally,” she said. “I realized that even the way that I pronounce things is different, which is kind of weird. I’ll have to think about it, like is this pronounced this way or this way?”
Carlos Cabral, 35, who works as a surgical technologist at a hospital in Pasadena, California, got sick from COVID-19 after traveling to Mexico to be with his dying grandfather in April. He was hospitalized for about a week, and in that time he was so sick that his lungs, kidneys, and heart were affected. A few days in, the doctor suggested he talk to a chaplain and sort out his financial affairs because it wasn’t looking good.
“I wrote a farewell message on my phone to my mom, my dad, and my sisters and my best friend. That was a really powerful moment for me this year. Where I felt like I had no control over what was happening. I lived a beautiful life. I felt grateful, but you know, at the end of the day, all I really wanted was to hug them one last time.”
The following day, somehow, Carlos began to recover. He’s back at work now, but his lungs are not back to normal, he said he’s noticeably slower than he used to be, and he still has fatigue and neuropathy — tingling and pain — in his hands and feet. He told his bosses he can’t pull the 24-hour shifts that are expected at the hospital anymore, so they’re cutting his shifts back to 12 hours at a time.“I wrote a farewell message on my phone to my mom, my dad, and my sisters and my best friend.”
Junior had to put his music work on hold — when he got sick in July he was about to record an EP. His work at the hospital, too, has paused. He’s on short-term disability right now, because he can’t do his job remotely and he’s not only too fatigued to work but also scared of whether or not he’s still infectious. He’s been testing negative for COVID, but he’s worried about his lingering symptoms. His hospital, like many others around the country, has also been losing money fast. They’ve closed their outpatient services and have a freeze on hiring, so he can’t look for a job in a different department there. Junior is very concerned that he’ll soon lose his job.
“I had to take like a month off, and then I told them after the month, I still don’t feel good. I could probably drive to work. That’s pretty much the extent of my energy is driving to work, and once I get there, it’s done,” he said.
At first, like me, he struggled with not being able to work and be more helpful in the midst of a pandemic.
But then “it kind of shifted my perspective,” Junior said. “Before it was, ‘I miss going to work,’ but as the symptoms progressed and life kept going on but you kind of stay in that same place, now I see things [differently]. Now it’s not ‘I miss going to work.’ It’s ‘I miss being able to walk down the sidewalk for 30 minutes.’”
“Don’t be afraid of COVID,” Trump has said.
Things I am afraid of:
Not being able to work.
Never recovering fully.
Heart problems. Lung problems. Neurological problems. Circulation problems.
Never being able to get through yoga class again.
Having to live a slower life.
Not knowing when I’ll see and hug my mum (and other people I love) again.
There are a handful of clinics around the country starting to focus specifically on COVID patients with post-viral symptoms. But there isn’t widely available medical support or research to help this new population of Americans. As someone with pretty good health insurance, it’s still taken me more than six months to speak to a doctor, my cardiologist, who actually tried to get to the root of what I’m going through. Last week, after several tests, he landed on the same thing several other doctors have told me: It’s not clear why I’m not better yet, and there’s nothing to be done except rest and wait.
In other countries, governments are starting to acknowledge that the long-term public health fallout of long COVID isn’t going away. The head of the UK’s National Health Service said last week that it will open 40 publicly funded clinics to serve people with these post-viral complications, investing £10 million into clinical services, planning, and research.
“Long COVID is already having a very serious impact on many people’s lives and could well go on to affect hundreds of thousands,” said NHS Chief Executive Simon Stevens, estimating that around 60,000 people in the UK are already dealing with long-term COVID symptoms.
“More recent evidence is also showing that long COVID can be categorised into four different syndromes: post intensive care syndrome, post viral fatigue syndrome, permanent organ damage and long term COVID syndrome,” the NHS announcement said.
That’s already more clarity than most of us in the US with long COVID have been able to get. Our CDC took until July to even acknowledge that people have long-term issues from COVID and now offers only this explanation: “The long-term significance of these effects is not yet known. CDC will continue active investigation and provide updates as new data emerge, which can inform COVID-19 clinical care as well as the public health response to COVID-19.”
In the absence of real medical guidance, we’re realizing that we need to learn how to live with this illness. Educating ourselves in these support groups is exhausting but necessary — something we’re learning from people who have for far longer dealt with other “invisible” illnesses like chronic fatigue and lupus. They’re all too familiar with what we’re dealing with now: when the medical profession doesn’t seem to have many answers for you, and the people around you find it hard to understand or even believe that you’re struggling.
For many people — myself included — the scarcity of tests early in the pandemic has left us adrift in a particularly strange limbo, experiencing the crushing symptoms of the virus while having no definitive positive test result.
When tests were still scarce, many people were told by doctors that they likely had the virus but couldn’t get tested unless they were hospitalized. And then there were plenty of false negative test results, which doctors said they were getting a lot of in the early months. (That’s what happened to me — and after ruling out other possibilities, I was told by doctors that I should assume I had COVID-19.)
Both of those scenarios are particularly hard to deal with in this culture of reluctance to give people space and resources to be sick and recover, where illness must be in some way certified to be taken seriously (to the point where, in several states, voters had to provide a doctor’s note to be able to vote by mail in the midst of a pandemic).
“I woke up with fatigue so bad one day — I woke up and I actually laughed because of how ridiculous the fatigue was, like, if I were to tell people nobody would believe me. I was that tired,” said Junior. “No one will ever believe me that I can barely walk to the bathroom.”
Carlos said he filed a complaint to the hospital he works for after a surgeon and anaesthesiologist he was working with went on a tirade claiming COVID-19 wasn’t real and mocking him after he told them he was having a hard day with the fatigue. They were suspended for their comments, he said.
“After that moment, I remember thinking, I’ve always been such a happy person. I’m just so tired of feeling unworthy. Because that’s what it’s like, feeling broken. Like not myself,” he said. He’s taken up meditation, which has helped improve his mental health, and tries to keep up a routine of gentle stretching every day.
In one long COVID support group, there’s a discussion about histamines, with links to preliminary studies. In another, people share stories about stupid things we forget: One woman ran a bath and only realized after she tried getting in that it was ice cold. Jenn told me she sometimes forgets how to put her car in drive.
Jenn always has a thesaurus site open on her phone now, for when she loses her words. I’m starting to sense when a mental blank is coming and try to slow down my speech until my brain can catch up. Swapping these stories, we laughed about our weird brain freezes — relieved to speak to someone else who truly understands.If nothing else, more of us have to come out of this with a greater awareness of this country’s systemic failures.
A friend of mine who had chronic fatigue for years has helped me draw a road map for how to live with this, and importantly, how to stop seeing relapses and improvements as failures and victories — a tally that can drive you mad.
She introduced me to spoon theory: an imperfect but helpful concept that patient advocate Christine Miserandino came up with to try to explain how she lives with lupus. When you have a chronic illness, you have limited amounts of energy every day — imagine you start the day with 15 spoons. Each thing you do, from showering to making coffee to speaking to your boss on the phone, takes a certain number of spoons. The spoons are finite. Ration your energy accordingly, and know that if you exceed your daily spoons, you’ll be working with far fewer the following day.
I lose my words, sometimes, in the middle of a sentence. I’m asking a question or making a point, and the gears in my brain just grind to a halt. This is a jarring feeling for someone whose livelihood hinges on finding the right words, in multiple languages. My mind is trying to race ahead at its normal pace and it just. Doesn’t. Work. So maybe it’s OK if I speak a little slower for however long this lasts. Give myself time to find the words, and catch my breath.
Jenn tells me how she’s still struggling with fatigue almost every day, body aches, swelling of her feet, and trouble regulating her body temperature. I can relate. Occasionally, after a busy day, I’ll have some trouble breathing again — maybe the worst symptom because it’s hard to talk to family and friends outside my isolated apartment. In recent weeks, I’ve been exhausted every single day. Pre-COVID, I’d go to a yoga class, take a long walk, hang out with friends, all things that I’ve relied on to pick me up when I’m low on energy. Now, the options are sleep, walk down the block, a video chat. This is just how it has to be sometimes. I tell myself it won’t be forever.
Right before getting sick, Jenn bought a Peloton bike — she had to sell it pretty soon after, because leisurely walks and a weekly gentle yoga session are what she’s able to do right now.
“Sometimes I’ll go for walks with my dog, and honestly, even if I go up a slight hill, I’m like, Oh my gosh. And then my inhaler doesn’t work, I mean, there’s nothing that can help it,” she said.
Junior had chronic fatigue in the past. He said he’s trying to heal his post-COVID symptoms the same way he dealt with that disease: through lifestyle and diet changes that help his energy and immune system.
“You have to completely change your diet to like anti-inflammatory everything, all organic everything. You have to regulate your sleep. You can’t exercise too little, but you cannot exercise too much. You have to get rid of stress,” he said.
Easier said than done with the pressure to find and keep work, while feeling like your body’s on the brink of giving up on you some days.
Despite these challenges, he’s philosophical about this chaotic year, and ultimately optimistic. He said where there’s hardship, often there’s transformation, both for individual people and for us as a society.
“I’m not really like a religious person, but I do believe in the universe and our connection with it, and how we’re all intertwined,” he said. “This year the world is shifting, with the volcanoes and COVID and the rioting and what’s going on overseas in, like, Hong Kong and China, and then with the election, it seems like everyone is going through something at the same time.”
“I feel like we’re going through some kind of huge energy, spiritual shift, but I can see the light at the end of the tunnel, kind of with this election being like the first thing to change,” he said. “And then after that, it’s going to be like a snowball. Everything will get better one by one, and then we’ll all go into that shift. But right now, we’re all just going through it.”
It’s comforting to hear Junior’s optimism, though I’m more skeptical about the world at large making real progress. As we head into a pandemic winter that feels particularly foreboding, I am more hopeful about people on an individual level. Surely, if nothing else, more of us have to come out of this with a greater awareness of this country’s systemic failures and how we internalize the harsh demands that are placed on us.
The week before Thanksgiving, I saw my cousin, now 13, for the first time since the spring, bundled up against the cold in my aunt and uncle’s backyard, masked and at a distance across a fire pit. I wanted to cry with the simple relief of being in their company, talking about the usual things (school, soccer, work, food, politics) and the less usual things (masks, hospitals, symptoms, vaccines). The next day, I traveled for work again for the first time since March — a 48-hour trip. I needed to sleep for 17 hours when I got home. I’ve taken these things as evidence that although it’s nothing like what it used to be, life is moving forward. Maybe moving at a slightly slower pace doesn’t have to be a terrible calamity. Having a little patience and a lot of restraint does not mean that I’m giving up. ●