An Etiquette Guide for Long COVID – The Atlantic

A brief guide
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Before I got long COVID, I tuned out virtually all stories about it. They were tedious because I was tired of the pandemic, because we are all tired of the pandemic, because it is as familiar as rain and honestly just as dreary; I can hardly believe we once called the coronavirus novel.
Today, I still tune out most long-COVID stories, though for different reasons. (Busman’s holiday. I outsource the job to my family.) But millions of us suffer from long COVID (“the pandemic after the pandemic,” as a Washington Post editorial put it last week), so today I’d like to discuss … etiquette. That’s right: manners. I’d like to offer a civilian’s guide to navigating the sensitivities of those furious, frustrated, irritable millions—and to better understanding them.
The fact is, no one—including doctors (especially doctors, dear God, these doctors)—knows the right things to say to those of us who have long COVID, because no one seems to be thinking about this wretched condition in the right way. Nor does anyone seem to understand the unique psychological suffering associated with this condition. It’s hideous—arguably worse than some of the very worst of our physical symptoms. Which, let’s face it, are already pretty grim.
Read: The future of long COVID
Shall we begin? For starters: Asking “Are you doing any better?” doesn’t help. One has to think of long COVID as a chronic illness—cause unknown, cure unknown, recovery timetable (assuming there is one) unknown. I had to explain this early on to my parents. While I appreciated their frequent texts inquiring about whether I’d seen any improvements, they were a certain recipe for misery. I wasn’t; I’m not. I’m on month eight and still declining in many crucial respects. “How are your symptoms today?” is a far better question.
A related-but-different point: Long COVID symptoms often change. This syndrome is wily, protean—imagine a mischief of mice moving through the walls of your house and laying waste to different bits of circuitry and infrastructure as they go. That’s what I’m experiencing. In the past month, I started developing blood-pressure problems when I stood up. Good times! The month before that, I became breathless when I walked. Why? No clue. But now it’s a new feature of my life.
So friends, relations, colleagues, acquaintances: If I have a new symptom, just roll with it, and maybe approach it with curiosity. Horror or pity—Oh my God, I thought you’d be better by now!—doesn’t help; it just underscores my rotten luck.
Speaking of which: Can we talk depression for a second? It’s overwhelming, what I’m experiencing. Ghastly. Some of it is probably biologically driven, caused by COVID itself—something I should have realized, in hindsight, at week three, when I was curled in the fetal position, bawling uncontrollably. (It was far too early for me to be despairing about my COVID symptoms. An MRI at week eight would reveal lingering brain inflammation, a potential marker of depression.) But some of my misery is the realization that everyone else is leading their lives and I’m not, and I don’t know if I ever will again.
Can we also talk shame and resentment for a second? Those are overwhelming too. Speaking only for myself here, I feel like this was a worldwide test that I and I alone among my cohort managed to fail. Pretty much everyone I know got the Omicron variant of COVID and beat it in a matter of days or weeks; I didn’t. When I learned that Joe Biden quickly got over his own case of Omicron, I burst into tears. How did an octogenarian manage to do that while I’ve been suffering for seven and a half months?
I’m not proud of this.
A corollary: I find myself filtering a lot less of what I say these days, because this state of awfulness may be how I spend the rest of my life. I’ve become Bill Murray in the bathtub in Groundhog Day, that toaster nestled under his arm.
Here’s an anecdote my healthier, more circumspect self would have once filtered, rather than coyly starting a game of guess-who, but whyever not, I’ll share it: A few months ago, I told a higher-up at The New York Times—we’re talking very high altitude—that I’d been struggling with long COVID. His reply: “Is that the excuse everyone at The Atlantic uses when they’re unproductive?” It was a staggeringly insensitive thing to say. Even now, I find myself staring into space, wondering if that moment was real. (It was.)
Read: Trying to stop long COVID before it even starts
In case you’re wondering how I’m spending my days: in bed, often. I write from there, like Proust (except that I don’t write like Proust). Or I’m going to doctors. That’s your job if you have long COVID, seeing doctors. If your vestibular system is out of whack, you see a series of ENTs, then neurologists. If your heart is galloping along or doing weird things, you see a cardiologist. If you can’t breathe, you get chest X-rays, see a pulmonologist. You do rehab. You try to exercise a little, because you know you’re supposed to, but who are we kidding, it’s awful just trying. You try all kinds of alternative treatments (massage, acupuncture, supplements by the fistful in my case) and spend lots of time politely listening to people tell you about their favorite naturopaths. You get MRIs and CT scans and sonograms, and still no one knows a goddamn thing.
What’s sometimes confusing to people is that I can pass for well. But what it takes for me to seem like my usual self if I meet a friend for a cup of tea, at, say, 4 p.m.: 15 milligrams of meloxicam (an anti-inflammatory), 600 milligrams of gabapentin (a pain blocker), and 0.5 milligrams of klonopin (a vestibular suppressant). Also, an industrial-strength antidepressant. Also also, two blood-pressure stabilizers. Then I’m Humpty Dumptied enough to socialize.
Steroids work, too, but they’re bad for you in the long term and turn me into an irritable shrew.
Moving on: Don’t ask what it’s like to have long COVID, at least not with the naked prurience that one professional acquaintance of mine recently did when I made the mistake of briefly dropping in on a colleague’s book party. She cornered me and wouldn’t stop with her Gatling-gun questions, even when I told her the room was too loud and speaking hurt my head. “Just one more thing,” she kept saying.
“No more things,” I said as I backed toward the door.
But in the interest of time and efficiency—“see my piece in The Atlantic,” I’ll say from now on—herein I give you a condensed version of what long COVID has been like for me:
The COVID was the easiest part. I was practically asymptomatic. I walked the dog, drove four hours in the car, hiked the beach, canoed. This was in late June. The doctors in my life should have understood that this spooky absence of symptoms was an ominous sign—my immune-compromised self wasn’t putting up a fight when it should have. Instead, they all brushed off my concerns when I rang. To a person, they steered me away from Paxlovid.
Remember that crazy national moment when doctors were being weird about Paxlovid? And were really down on it? I got COVID in that brief window.
I cannot tell you how often I go back to that moment and take Paxlovid. It’s the world’s most unproductive form of magical thinking, trying to undetonate this bomb. And yet I do.
Anyway, around day 10, things went south. I was suddenly dizzy every moment of the day. The world looked like The Blair Witch Project, always bouncing. It bounced when I chewed. Then came the tinnitus, the ear fullness. Ménière’s disease seemed likely.
Google Ménière’s disease. It’s very challenging. I have nothing but compassion for those who have it.
Many elaborate tests later, I turned out not to have it.
The nature of my dizziness changed, feeling more like a gyroscope was spinning in my head, or like I was being pulled slantwise by magnetic raindrops, every damn second. Then came the whale of all symptoms: My head started to vibrate, painfully, every time I walked or talked.
Read: Long COVID has forced a reckoning for one of medicine’s most neglected diseases
People have asked me a lot about this. I really don’t know how else to explain it. I mean, imagine a tuning fork inside your brain. Every time I take a step, I feel it in my skull. Ditto when I speak. My latest combo of meds blunts most of the pain that comes with it. But the vibrating remains, and it’s driving me mad. I’m waiting on my insurance company to approve Botox injections to my skull. (Oh, the irony of being a 53-year-old woman praying for Botox in a place where it will have no visible aesthetic benefit.)
Then my standing heart rate got too fast. (Now it’s fine.) Then my blood pressure spiked when I stood, plus other forms of autonomic dysregulation. My eyeballs spin freely in their sockets for the first 20 minutes of each morning, for instance. Then my chest started to ache. Maybe from the blood-pressure spikes, maybe something else. And I’m short of breath now when I walk, as I said.
You see the problem, right? My aching chest, my breathlessness—it all means more doctors. And I am really, really sick of doctors. Most of them know nothing, and if they can’t help you, they have little time for you. Many of them dramatically underestimate quality of life as an issue.
The shape-shifting nature of long-COVID symptoms also makes our medical system ill-suited to deal with long COVID. (Actually, it’s ill-suited for a thousand reasons. But this is one.) Telling your long-COVID story in 15 minutes, which is what most doctors have for you, is not possible. You develop shorthand. You resort to metaphors. Both are problems. One doctor asked if I thought there was an actual gyroscope in my head, for instance. “Uh, this is a vestibular problem I’m describing,” I said, “not a psychiatric one.” Asshole.
The worst part? Because no one understands what causes long COVID, even the best doctors can only treat your symptoms separately. My blood pressure gets two medications. My vibrating head gets a third. My vestibular symptoms get a fourth. My pain gets a fifth. Inflammation gets a sixth. The microclots I may or may not have, which may or may not cause long COVID, require three different supplements, which may or may not work.
This said, the long-COVID team at New York’s Mount Sinai Hospital at least thinks holistically, even if they don’t know what lurks at the heart of my problems. I feel lucky to be under their care (plus two dogged and creative immunologists at Columbia Presbyterian). I cannot imagine what it’s like for the millions of Americans who don’t have access to the minds and resources I do.
If you encounter them, remember that they are suffering. Remember that they don’t want to be pitied. Remember that they’ve each developed their own idiosyncratic strategies to cope, and that they don’t need to be told to do more or to do less or to approach things differently. Be gentle. Disease eventually ensnares all of us; when it happens to you, you’ll crave the same.

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