Beyond all reason

Long COVID patients are constantly harangued about our requests for COVID safety. Yet what we're asking for is far less than what we're called on to do to survive.

It’s unreasonable.

Yesterday, Jamelle Bouie, a popular progressive columnist for the New York Times mused on Bluesky that “a commitment to public health obligates you to get vaccinated and, when you are sick, do what you can to avoid spreading that to other people. The demand that one mask at all times in public spaces is, I think, unreasonable.”

Before I begin this column, I’ll note that I quite like Mr. Bouie’s writing. It’s why I follow him. This piece isn’t intended as a nasty takedown or anything of the sort; it’s intended to respond to a broader cultural sentiment raised here: masking is unreasonable, and what I find interesting about this particular framing.

A few things about the full statement: first, vaccines do not prevent infection well, and within weeks of receiving a booster shot, they do not prevent infection at all. Therefore, while they serve public health by potentially alleviating some burden on local hospitals, they don’t slow the spread of COVID at the community level. This Journal of Infection study looking at the VE (vaccine effectiveness) of the XBB booster vs infection found “VE declined rapidly and by approximately weeks 9–12 post vaccination, the VE point estimates were close to zero with considerable uncertainty in the estimates from day 60 onwards”.

Secondly, a note about “when you are sick.” I’ve already covered in this article about common COVID misconceptions that nearly half of COVID infections are asymptomatic. This meta-analysis found that the “overall estimate of the proportion of people who became infected with SARS-CoV-2 and remained asymptomatic throughout infection was 44.1%”. This means you do not know when you are sick.

Even people who do get symptoms are often contagious before symptoms emerge- usually a day or so prior to feeling that tickle in their throat or that unpleasant cough.

So, the only tool we have to prevent the spread of COVID- to avoid infecting and sickening other people- is consistent masking. Which is frustrating. You could even call it unreasonable.

You could call the situation unreasonable. You could call the situation our government has put us in unreasonable. You could direct your frustration over said unreasonable, untenable situation upward, where it belongs: at the government, not downward, at struggling sick people, who have no choice but to engage with COVID safety practices including masking.

We are not being unreasonable to expect freedom from infection with a pathogen that will certainly further disable us when we step into a public space. We are not being unreasonable when we expect solidarity from nominally progressive people. We are not being unreasonable when we demand an end to this charade that COVID is “normal” now and we’re all going to have to accept endless infections- so if that means disability, loss of career, loss of home, loss of life for you, you’re a write-off. That is not a progressive argument.

Let’s talk about the “reasonable” things being asked of Long COVID patients in our current reality.

According to the masses:

It is not reasonable to ask “regular” people to wear masks ever, but it is reasonable that anyone and everyone who cannot afford another COVID infection must wear masks always, everywhere forever, knowing one slip-up could mean permanent loss of function, loss of career, loss of house and home, loss of life.

It is not reasonable to ask for any COVID safety from the less vulnerable, but it is reasonable to ask for maximum COVID safety from the most vulnerable- and all the attendant hassle, time, energy and money that involves. (This, rather than demand an institutional, long-term mitigation and elimination plan from the government).

It is not reasonable to place any expectations on the broad back of the majority of society, but it is reasonable to pile everything the majority won’t do on the thin slice of disabled people who are carrying their own weight and attempting to carry everyone else’s as they drown.

Do abled people understand, when they say it’s “unrealistic” to expect people to mask everywhere, that they are describing the only guidance disabled people have received re: how to get through another day alive? Like, very literally the guidance from the CDC as to how to survive the ongoing pandemic - by constantly masking, by testing every person around us, by avoiding the COVID that those around us are doing absolutely nothing to stop spreading?

Sounds simple, until you consider trying to adopt some of those measures yourself, does it?

Do abled people understand that following this non-guidance is made a hundred times more difficult when, culturally, people chose to deny they can do anything to help halt the virus as we desperately tighten our masks on a crowded flight, pray over our tests when we get home, and isolate ourselves from former loved ones who won’t stop endangering our health?

Do they understand that when they envision attempting to avoid COVID in our current climate as unnecessarily burdensome, they are picturing a hectic, difficult game of frogger that people more vulnerable than them have no choice but to wake up and play each morning?

Why not recognize: wow! What a difficult reality we’re creating for anyone who’s been harmed by the virus. That could be me next, since I’m getting reinfected in these bi-annual waves. Instead of complaining that disabled people are asking me to participate in normalizing COVID mitigations, why don’t I acknowledge the absurdity and severity and difficulty of this situation? Why don’t I participate in changing the culture before it’s my turn to suffer as others ignore me?

Yes, it is difficult. It is burdensome. You could call it unreasonable! But when you shrug off the difficulty and burden of practicing COVID safety in the current climate, you are casting that burden onto the shoulders of those who are already carrying more than you are. Who can afford infections less than you can. Who in many cases have fewer resources than you do and almost certainly have fewer safe social outlets than you will.

Most abled people can adopt a somewhat curtailed version of COVID-safety that reduces risk a great degree without abandoning social life entirely, whereas many COVID safe people, including those suffering from severe Long COVID, have to practice much stricter precautions and may additionally be isolated by disability.

Abled, adapted COVID-safer living might include guidelines like masking in indoor public spaces, but unmasking for outdoor drinks, dining and gathering. Add in rapid testing for those unmasked gatherings, and the picture isn’t perfect- but it significantly reduces risk from the current norm of “doing nothing” and “pretending COVID doesn’t exist”. It begins to re-introduce concepts of masking and testing to the culture and destigmatizes them. It’s important to socialize the ideas that it is okay to mask and to test for COVID, instead of constantly framing them as “crazy” and weird.

And what of clean air? An objection I often hear is that masking is an “individual intervention” and we need institutional change. First, your individual intervention will halt chains of transmission. You personally will save lives, save humans from disability, and your decision to introduce masking and testing within your social circle helps move culture. Culture is critical- especially if you’re somebody influential like say, a New York Times journalist. But I’d also add that we will never get clean air without public pressure, and there will never be public pressure without public awareness that COVID is dangerous. As long as the public continues to treat COVID like a cold the government has no incentive to move on clean air. Step one is admitting you have a problem. The government hates masks so much these days because they are a visual challenge to its propagandist narrative: it is perfectly fine and healthy to repeatedly contract COVID-19. This is a lie.

I was disabled by this virus nearly two years ago. It is not “crazy” to avoid a virus that already disabled me. It would be extremely odd to accept the public propaganda that this virus is harmless over my body’s own truth: that it has been destroyed by this virus, despite having received my vaccines when I was infected in November 2023, despite having taken Paxlovid. I am not brainwash-able, I am no one’s partisan pawn. I am living proof. COVID can and will harm you.

For people with Long COVID like me, precautions are likely to be much stricter (although self-destructive behaviors are a thing, many people with Long COVID go to great lengths to avoid reinfections). Rapid tests are notoriously faulty, and many people who practice stricter COVID safety prefer to use higher accuracy- and more expensive- home tests- like Metrix and Pluslife. Unmasking outdoors can also be risky, although not as risky as indoors. But for those with Long COVID- for those who’ve already lost careers, homes, and the ability to walk down the street- even smaller risks may not feel worth gambling on.

Is it “reasonable” to have to mask all the time? To have to test people all the time? Of course, it is not reasonable, nor fair. That is why COVID-aware people continue to advocate for change. As mentioned above, we want clean air in the form of upgraded ventilation and filtration standards. We want and demand institutional-level mitigation and elimination. Because none of what we’re being asked to do is reasonable nor fair. It is constant stress and constant danger being placed at the feet of people newly disabled by a disease that even our doctors barely understand.

Long COVID is not reasonable. When I developed it, I was not asked whether I felt having migraines 25 days out of the month, or losing the ability to walk down the street, or having to use a chair in the shower at the age of 37, was reasonable. I wasn’t asked whether losing my ability to drink alcohol, smoke weed, drink caffeine, and eat gluten was reasonable either. I wasn’t asked whether week-long crashes in which I find myself too ill to sit up were reasonable. I wasn’t asked whether saving up energy, day after day, to find the strength to shampoo and condition my hair, would be reasonable.

I wasn’t asked whether needing a wheelchair to get to my new cardiologist’s office in the sprawling Georgetown MedStar building felt reasonable.

Sometimes in life we don’t get to decide whether reality is reasonable. Sometimes reality is just reality.

And the reality right now is that if you refuse to engage with the science- the science that shows that COVID is a virus that disables human beings, and that this virus is asymptomatic 44% of the time- then you are spreading a disabling virus, and you are harming people. If you believe it’s unreasonable that you have to wear a mask indoors to prevent the spread of that virus, turn your irritation and your ire toward the target that deserves it: your government.

Get angry. Join with us and punch upward, not downward. Get angry that you have to do these ridiculous, annoying, unreasonable things in year 6 of the pandemic, instead of being assured that a disabling virus won’t be spreading in every public space long after this problem should have been handled with upgraded indoor air quality and new technologies like Far UVC.

Get angry that your government decided it would be a-okay to allow this virus to circulate year-round with no end in sight.

Get angry that your government knows that Long COVID is now the leading chronic illness among children and it is doing nothing but continuing to force a long-disproven narrative down your throat: it’s fine. It’s safe for children to get COVID. Again. And again. And again. And again. And again. And again.

If you can’t imagine having to live like those with Long COVID are being forced to live indefinitely- but, no, let me correct myself. If you can’t imagine being forced to live with a fraction of the inconvenience, in a fraction of the fear that those with Long COVID are being forced to live indefinitely, trying to avoid an infection with the virus that already took their livelihoods or their ability to read or their ability to walk, think about what it means that our government is forcing that reality on people around you. Think about what it means that you’ve cast off the burden of that reality by denying it, magnifying the difficulty for others more vulnerable to COVID than you are.

Every person who doesn’t mask and test intensifies the difficulty of viral evasion for the remaining people who are working to avoid COVID. And for those of us who cannot afford to catch it- many of whom have already been grievously harmed by one or more infections- seeing people dismiss COVID safety as “too difficult” and “unreasonable” is a complete slap in the face.

It is just as difficult for us. It is more difficult. You are making it more difficult. And on top of that, we are so, so, so, so sick. You can’t even imagine how sick so many of us are.

Well, I don’t believe you can. It’s clear that you aren’t trying.

But Long COVID can happen to anyone. We keep saying it. Nobody listens. For convenience I continue to separate “those with Long COVID” who must avoid another infection from those without- who can afford some mystery number of infections. But it’s possible your next infection may disable you too. It is for yourself, as much as for others, that COVID is worth avoiding. The “unreasonable” of wearing a mask indoors does not compare to the “unreasonable” of Long COVID plus the “unreasonable” of scrambling to avoid another infection while the still-well-enough people sniff that doing anything to mitigate the virus is simply asking too much of them.

I am not sure why so many people do not believe that COVID is dangerous. The science is not particularly ambiguous. I do know many people do not believe we are sick. I know others don’t believe we are that sick. As I sit by my living room window on a high floor in my apartment building, I watch people running their errands. I long to be one of them again. I imagine being able to walk to the end of the block, to the coffee shop. I imagine ordering a coffee, even though I can’t drink coffee anymore because caffeine is a migraine trigger for me now.

I miss drinking it black. I miss drinking a tall soy vanilla chai latte, even though I wouldn’t order that now, because I used to get that at Starbucks, and I stopped going there, because of the boycott.

I imagine walking down to Dupont Circle and laying in the grass reading, like I did for so many years when I was well.

I imagine taking the clothes I’ve needed dry cleaned for years now to the dry cleaner (if it’s still there), and I imagine going to the post office myself instead of sending my friends. I like fall. I like fall in this neighborhood listening to Lana del Rey and sipping my coffee. I imagine going to the market and picking up seltzer waters and paper towels and not paying the 89 billion percent mark-up on delivery that I have to pay, because I’m homebound.

It wouldn’t feel unreasonable, I think, popping on my mask before I walk into the supermarket, and wave hello to the security guard who used to complement my shoes (if she’s still there). No, it wouldn’t feel unreasonable at all.