My (Very) Long COVID Experience — Help Wanted
This is who needs to step up.
It has taken me a very long time to write about my very long and grueling experience with what is called “long-haul COVID” or simply “long COVID.” Call it what you will — just don’t deny it exists to my face, or I’ll be tempted to punch yours.
I call it hell — and I’ve been in it since May 2022 with a few days, weeks, and even months of respite here and there. Unlike typical depictions of hell, mine includes plenty of false hope: It’s as if the demons go on vacation and mercifully extinguish the fire — only to reignite it later with a vengeance. They do this to some extent every night: I’ve woken up hundreds of times from a deep, heavenly sleep feeling cured and rejuvenated— only to notice in the short walk to the bathroom that I was gravely mistaken.
For me, long COVID typically comes in the form of chronic inflammation, which ranges in severity from a mild, phlegmy nuisance to the feeling of having a heavy foot pressed against my chest. Although 20 months in hell has turned me into an angry, bitter man, I do not wish this affliction on my worst enemy.
(But to be honest, I do wish it on a few politicians, especially if it would lead to a major shift in priorities.)
I’m hoping to spread awareness rather than garner sympathy — but sympathy is better than nothing: It’s about as much as I’ve gotten from doctors in the way of effective treatment. I won’t ask for empathy because it’s impossible to give unless you also suffer from long COVID or a similar chronic illness. While empaths are great at feeling others’ emotions, I don’t think anyone is capable of feeling anyone else’s physical pain and suffering. (At least I hope not.)
I do hope at a minimum you come away with the realization that very sick, downtrodden people walk among us every day in all shapes and sizes. It’s easy to judge a book or a human by its cover, but many sick people can pass as healthy. Some are like me: young, sharp-witted, gritty, handsome, well dressed at times — but often on the brink of physical and/or emotional collapse. People like me don’t need (or want) the kind of helping hand a stereotypical old lady crossing the street might need, but we need a hell of a lot more from society than what we’re getting now.
I plan to fully document my long-COVID experience— if you can handle it — but I’ll start by calling out a few groups and institutions that need to step up and provide much-needed support.
#1: Family
“Another thing I learned in therapy?” Angie said. “The kids in dysfunctional families who act out and rebel are the ones who are the healthiest mentally. They’re the ones who see that something’s wrong. That’s why they act out, because they see the house is burning down, and they’re screaming for help. That was you.”
— Meg Shaffer
I think Newton’s First Law can apply just as easily to families but with a slight tweak: Families who begin in denial stay in denial unless compelled to change by an outside force. I have never heard of a family that has rejected its allegiance to tradition and the so-called “wisdom” of the elders without a demand. Families are conservative by nature, and the individuals within them are often expected to play a role, which is often defined based on the family member’s age, gender, (perceived) ability, etc.
Note that when I say “defined,” I don’t mean that familial roles are made explicit or written in the family photo album— just that there is often a strong sense that certain things are “expected of” each member (for better or for worse). To take an easy example, I was expected to go to college because I did well in grade school. If I had chosen to travel the world for four years instead, my family would have viewed this as rebelliousness rather than intrinsic to my identity. Thus, I would have remained the same college boy in their eyes despite my rejection of their expectations.
Consequently, my family cannot see my illness now as intrinsic to who I am, so I remain the same healthy boy (turned man) — in their eyes — and am treated as such. This is despite the fact that they have witnessed me struggling to breathe on numerous occasions — without any history of asthma or other respiratory ailments— and complaining about everything from chest tightness to constant congestion. I get so much phlegm in my throat that I spit as if I’m chewing tobacco 24/7: I spit into sinks, toilets, and empty cups and out of car windows and doors. They know (or should know) that this isn’t normal.
They know (or should know) that I’ve been to the emergency room, urgent care, and at least five PCPs and specialists. They even know (or should know) that in my darker moments I have contemplated suicide. I keep none of these things a secret: A desperate person does not have the privilege of keeping secrets.
But it turns out that Newton’s First Law also applies to desperate people. Without an external (benevolent) force to stabilize them, desperate people stay desperate indefinitely. We emphasize rugged individualism a lot in the West and tend to judge the desperate souls who fall short of this ideal — but if every emotional or logistical need could be met by the individual alone, relationships would be meaningless. We all need someone to lean on at times: the Bill Withers song says it all. This is what family could (and should) be. That would be a lovely day indeed.
#2: Work
The modern bourgeois society that has sprouted from the ruins of feudal society has not done away with class antagonisms. It has but established new classes, new conditions of oppression, new forms of struggle in place of the old ones.
— Karl Marx and Frederick Engels
Being forced to work (usually for someone else — with more money and power) just to keep the heat on and put food on the table is a form of oppression. You don’t have to be a Marxist to think this way: Just think about the last awful job you’ve had. I’ll wait…
Working isn’t the privilege that a lot of (white-collar) people on LinkedIn make it out to be because, regardless of our motivation or outlook as employees, we still lack control over much of our lives. Yes, some of us get to work from home, and this can benefit the chronically ill — but between the hours of 9 a.m. to 5 p.m. (give or take), the employer makes most of the rules. We can protest or even quit, but there are consequences for quitting that extend beyond one job: We get judged for quitting, and we get judged for merely not working, even if it’s through no fault of our own.
I’m anxious to tell a potential future employer that I stopped working because I was sick at the time and still am. (There’s no advantage to being sick if you still have to work.) I doubt said employer would appreciate my honesty and offer me accommodations. It’s far more likely that said employer will offer a few platitudes and proceed to cross me off the shortlist immediately. In a past job, when I built up the courage to tell my boss the extent of my illness (at the time), I was fired later that week — and it was the first time (ever) that any employer had expressed doubts about my capabilities. I can’t afford to give employers the benefit of the doubt. They’ve rarely extended any such courtesy to me. (They haven’t even extended me paid time off.)
We don’t get to be human beings as jobseekers. We often betray our youthful, wide-eyed idealism somewhere around age 30, and then sell our souls for a mediocre job we don’t want, become mediocre ourselves, and then post every little (mediocre) accomplishment on LinkedIn — when we know we’re not fooling anyone. I often get sad when I’m on LinkedIn — with all the job-seeking posts from desperate people on one hand and the tone-deaf vanity of the happily employed on the other. The latter — not the former — sound like the bleating of sheep.
If work is everything in this country, why isn’t it more meaningful? Why isn’t it more stable? Why isn’t it more AVAILABLE? Why do I have to brand myself as a jobseeker like some (possibly defunct) product on a dusty shelf? I would ask employers to make changes, but I know that it has to come from below. Solidarity forever! All workers unite!
#3: The Medical System
You treat a disease, you win, you lose. You treat a person, I guarantee you, you’ll win, no matter what the outcome.
— Patch Adams
The American medical system is a Kafkaesque nightmare if you come to it with a problem it can’t solve. Doctors, who seemingly specialize in one area at the expense of all others, rarely admit when they don’t know something. This means a patient like me ends up getting referred to six different specialists, who insist on running six different batteries of tests, and come to six different conclusions — none of which involves an effective treatment for even one of many symptoms. This would be bad enough if it were all paid for by my insurance company, but it often isn’t due to sneaky deductible plans, coverage exclusions, and other corporate bullshit. Even when a visit or procedure is covered, I often get billed anyway or harassed into paying what the insurance company arbitrarily refused to pay.
The medical system is a shit sandwich that people like me, unfortunately, have to eat at times — mostly just to rule it out, and then denigrate ourselves further with homeopathy or prayer. I can’t speak for those who have treatable maladies, but it would save me a lot of time, trouble, and money if the secretary, instead of scheduling an appointment, just told me that there was nothing the doctor could do for me. But this would hurt the bottom line, so the gaslighting continues unabated.
I couldn’t even get a prescription from a doctor who had once promised he would write me one — but then insisted that I see him (again) in person, when I had already moved out of state. Why give the patient what he wants in an efficient way when there’s money to be made? The customer is never right in healthcare.
Another doctor, a PCP, tried to force me to make an appointment when I asked for a simple referral to another provider. I was so sick I could barely leave the house and refused to go to the trouble but still insisted on the referral, which could have been easily handled asynchronously by anyone with opposable digits. I even drove to the doctor’s office with my wife and was told by the secretary that it would be emailed to me. It never came.
After I filed a formal complaint with my insurer, the PCP’s response was to claim they weren’t my PCP after all — even though their name was on my insurance card, and I had been “treated” twice previously. This is the kind of bureaucratic swindling that passes for healthcare in this country. (For the record, never fuck with Medics USA.)
I spent several months in therapy trying to forgive the medical system — to no avail. It’s one thing to look past the reprehensible greed that comes with living in an advanced capitalist state, but I can’t forgive that AND gross incompetence. I can’t forgive Piedmont Healthcare in Atlanta for calling or texting me every day for a solid week to collect $75 that I’d already paid — after paying them more than $3,000 for services hardly rendered. In almost any other context, if you get bad-enough service, you can get your money back. It should be the same in healthcare. We are customers after all — not patients. (They’ve turned me into more of an impatient: I think I’ll start off all future appointments hurling insults and accusations.)
And we’re worse-off still if we’re desperately ill customers. They bleed desperate people dry. To misquote Malcolm X: You show me a [medical professional in a] capitalist [system], I’ll show you a bloodsucker.
#4: God
God is dead.
— Friedrich Nietzsche
I don’t have a whole lot to say to God, but it should already be obvious that I’m not a fan of the whole of his (or her) creation.
Sure, there are some incredible features— namely mountains perched elegantly next to oceans (like in northern Greece). And God already knows I’m the biggest fan of the human female in just about all forms. I’m not sacrilegious, I give praise where praise is due.
Yet, God has seemingly left plenty of important functions on autopilot and was shortsighted enough to let Boeing take over from there. Beyond air travel, he undoubtedly has a tendency to put the worst people in charge of just about everything important — healthcare included. (I won’t go into politics here, but I’m very tempted in the way that Eve was tempted by the apple — the eating of which shattered all infantile illusions that life would/could be anything more than pure drudgery.)
Of course, it’s wrong to blame God for what man hath wrought. My wife corrects me on this often, and I don’t argue. (You learn this important lesson after one year of marriage.) But I do question how (and why) I ended up with long COVID despite being double-vaxxed, boosted, and possessing NONE of the major risk factors. I question why I bothered to wear so many masks, wipe clean so many public surfaces, and social distance on so many occasions — when none of it protected me in the end. I question why I bother to take care of myself as well as I do now: I’ve taken great pains to avoid caffeine, alcohol, and a lot of other things that make life more bearable — because they make my symptoms worse. What difference does any of it make if I can just get sick at any moment with no cure? I weep for other long haulers, especially those who lack my comforts and privileges. And I mourn those who have died of COVID — but sometimes I envy them.
I guess I should take some comfort in being alive and knowing I took COVID-related precautions for others more so than for myself. (I was privileged enough to be more afraid of the effects of social distancing and isolation than the virus itself.) Still, I do not take any comfort in suffering — and if I can’t get help from doctors or family (no point mentioning work here), I have little choice but to look beyond family and above doctors. God knows I can’t cure myself.
So, if you’re listening, God, please take this God-awful illness away. If you do, I will in turn devote my life to helping others who are chronically ill and short on hope and meaning. I don’t have much to give, but I have plenty of dark humor and ironic smiles.
With love,
A Desperate Man
