The Perfect Enemy | Long COVID doesn’t necessarily mean you’re sick forever. It’s stranger than that.
July 7, 2022

Long COVID doesn’t necessarily mean you’re sick forever. It’s stranger than that.

Long COVID doesn’t necessarily mean you’re sick forever. It’s stranger than that.  SlateView Full Coverage on Google News

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This essay originally appeared in the Lizzie Wade Weekly.

I tested positive for COVID on Jan. 20, 2021. This was before vaccines were available to anyone beyond health care workers and the very elderly, at a time when all you could do was hope you didn’t need medical care. We were right at the high point of Mexico City’s scariest surge. My WhatsApp was full of people desperately seeking oxygen for their critically ill family members, people were dying outside of packed hospitals, and seemingly everyone in my apartment complex was sick. A few weeks earlier, my husband and I had watched our neighbor’s corpse being carried out of her apartment in a body bag. Now many people were struggling to climb the stairs, dragging oxygen tanks behind them. And then my husband got a fever.

We both tested positive via PCR (I’m now haunted by how I would have interpreted everything that came next if I hadn’t gotten tested then). He could barely get out of bed for weeks. Meanwhile, I felt fine—fine in terms of COVID symptoms at least. I didn’t have a fever or a cough, no shortness of breath, not even any particular tiredness. I was as terrified and stressed out as I had ever been in my life, so I wasn’t doing great, but on the COVID front I was asymptomatic. I kept cooking and (kind of) cleaning, walking the dog, and checking emails; I even wrote a news story. Part of this was a necessity—there was no way my husband could walk the dog if he couldn’t sit upright, and I refused to require delivery workers to enter our obviously dangerous building. Part of it was a kind of ableist fugue state, in which I continued to manically go through the motions of my life in order to cast a spell ensuring everything would be OK. Resting would be proof that something was seriously, dangerously wrong, and I couldn’t allow that to be true. Not when there were no doctors, not when we had been so careful, not when needing help could kill somebody.

Of course, something was seriously wrong. About 10 days after the test, when I was exiting the infectious period and expecting to be able to relax even if just a tiny bit, I started feeling some fever-y muscle aches, though I didn’t have a fever. My skin was suddenly extremely sensitive; scratching an itch would lead to pain blooming throughout the whole limb. I developed a fatigue that went far beyond tired. A scrim lowered between reality and my experience of it, and there were days it felt like there was no qualitative difference between being awake and asleep. My head ached constantly. I could walk around, do the bare minimum of household tasks, reread books, and have what I think appeared to be relatively normal conversations. I couldn’t look at screens or think big thoughts or write anything beyond some very pared-down newsletters (see again: ableist fugue state). This lasted about a month.

Then the brain fog really set in. I wasn’t as tired, and the headaches weren’t as bad, but it was like I was operating in a language I didn’t speak. I mean that very literally: My version of brain fog felt almost exactly like living in Mexico before I spoke Spanish very well, except this time in English (and also Spanish). It went beyond forgetting words—it was like I’d never known them at all. I’d start sentences with no idea if or how I would finish them, hoping my subconscious would find the right path before I needed to take it. Other people’s reactions were the only clue if I was making sense or not, and if I wasn’t, there wasn’t much I could do about it except smile and hope they would jump in to help. Errands and customer service interactions transformed from mundane, predictable tasks into high-stakes adventures.

Luckily, walking into the fire of Spanish immersion is one of my most formative experiences and cherished memories, and in some ways I’ve spent the 15 years since trying to get back to that feeling of maximum uncertainty and total exhilaration. Brain fog brought it back, and my positive associations prevented me from fully freaking out. The situation wasn’t, however, conducive to writing in the way I was both professionally obligated and personally desperate to do. I stopped pitching and accepting assignments, eventually telling my editors I wasn’t sure when I would be able to work again. I lived off the money from a recent book advance (and got a long extension on its due date). I spent a lot of time in bed, and more rewatching TV shows. I meditated along with a sports injury recovery program in Headspace, envisioning my fuzzy brain being enveloped in a glowing orb of light. When I finally felt up to doing my first post-COVID interview, I grasped in vain for the word “progress.” I didn’t do any more interviews for a while.

Like learning a new language, my brain fog slowly improved with time and patience. At the very end, I only noticed it when I was doing crossword puzzles. I’d read a clue, go to the cabinet in my brain where I knew the answer should be, open it, and wait for the word to appear in the empty space. Feeling like I was physically repopulating my brain like this was honestly extremely cool and satisfying. All told, from my husband’s first symptoms to my last remnants of brain fog, it took three months. Professionally, COVID delayed my book’s completion by a lot longer than that, and the experience continues to limit how much work I can or want to take on, since it pushed back my book’s schedule and also rearranged my priorities. I went back to therapy. Psychologically, I’m still processing what happened and what it meant, and I probably will be forever.

Did I have Long COVID? I’m still not sure. The Centers for Disease Control and Prevention would say yes (symptoms lasting over a month); the World Health Organization would say no (for them, it starts at three months). I was obviously what researchers would call cognitively impaired. I didn’t really have post-exertional malaise, nor do I think I had the heart arrhythmias, blood pressure swings, or chronic shortness of breath that can result in drastic drops in mobility. My experience wasn’t linear or predictable, but it was constantly changing, and eventually, I did get better. Sometimes I call it Long COVID. Sometimes I call it Medium COVID or Weird COVID. But really, I think I should simply call it COVID.

Anyone who has talked to me one on one since I got sick knows I can’t stop talking about my COVID experience, even over a year after my recovery. But despite publishing a regular newsletter about my life, I haven’t written about it publicly until now. At first, I didn’t want to perform a very confusing illness and recovery on the internet, especially not in real time. Then, as my social world got vaccinated and sometimes breakthrough-infected, my experience stopped seeming relevant. It seemed like it was moving into the past, becoming a relic of the pandemic’s worst winter. I thought I would never write about it, that I would keep it for myself.

Then people I know, especially in the U.S., started getting Weird COVID, just in the past few months. Hypercontagious omicron and its subvariants, along with the widespread elimination of societal pandemic precautions, have meant that many white-collar Americans are now catching a virus they had previously been privileged enough to be able to avoid. Some of them identify their experience as Long COVID; some of them don’t know what to call it, just like I didn’t. In every case it’s far stranger, less predictable, and worse than they expected COVID to be, especially with all the experiences and immunity available to us in spring 2022. COVID still has the power to destabilize people’s realities, to limit the immediate circumstances of their lives and abilities while simultaneously exploding the horizon of possibilities they expected to experience. And yet the only stories we’ve found to offer about its not-life-threatening form are “over in five days, back to work!” or “lasts forever, you will never be yourself again.” Dip into social media and you’ll see cascades of posts about how COVID is nothing more than a little cough, interspersed with almost as many dire warnings that any encounter with the virus is all but guaranteed to leave you permanently disabled.

Those stories may both be true, for some people. Many (most?) of us, however, will find ourselves somewhere in the messy, confusing middle, with few models for understanding what we’re going through. This narrative failure is, frankly, unconscionable. It leaves people deeply unprepared for the many paths COVID can take. Worse, it opens the door for ableism to rush in and force us back into the shapes capitalism demands from us. Get better in five days and you’re a good worker and a valuable person; stay sick and risk being treated like the opposite, potentially forever. Because of this oppressive and incorrect binary, we’re so scared of not being better in five days (five days!) that, just like I did, we deny ourselves the rest that would actually help us recover. We cling to the prejudicial illusions that health is a moral imperative and disability a personal failing, and we use those false beliefs to create a reality in which everybody is all but guaranteed to get sick. And after all this time, after everything we’ve been through, we still refuse to see what COVID is telling us about our categories of “healthy” and “sick,” “able-bodied” and “disabled”: that they aren’t separate, permanent categories at all, but rather a spectrum all of us are always moving along.

For over a year now, I’ve been gobbling up COVID stories, hoping to find my experience reflected somewhere, anywhere. I have yet to find it. I’m not even sure that what I’ve written here captures it; deep fatigue and nonlinear illnesses have a way of evading language and narrative in a way that hovers between frustrating and mystical. Maybe all COVID stories are cursed to feel earthshaking from the inside but look clichéd and superficial from the outside. I don’t offer my story as a corrective, but as an addition to a COVID canon that is becoming increasingly rigid and unforgiving, and that continues to leave countless people wondering what’s wrong with them.

Having COVID sucked, and I’m still doing a lot to try to avoid getting it again. But experiences don’t have to be pleasant in order to be revelatory. It was staggering to see the outlines of my own ableism so clearly. And other people’s too: For the first time, I experienced what it’s like for people to imply that my life was their worst nightmare—a shockingly painful aggression that’s unthinkingly lobbed at fat and disabled people every day. On the flip side, I learned how common—and how nonsensical—it is for our public narratives to snapshot a slow recovery at its most difficult moment and present it as a static, lifelong tragedy. COVID challenged who I thought I was, and it planted the seeds for who I want to become. I was sick, and I got better, and I will never be the same.