See Here: Notes on Long COVID

46,000 of us on a Reddit sub. 60,000 on a private Facebook group. Tens (or even hundreds) of thousands still on Twitter despite the fallout from the buyout. Discord groups. Regional discussion boards. And circles absorbing circles as sub-types make homes in community with those suffering from ME/CFS, MCAS, and other illnesses.

These are just the collected few. We are always dealing with small clusters. Only 10-ish percent who get the virus will end up with post-viral syndrome. A percentage of those show symptoms severe enough, or enduring enough, to register among a baffled medical establishment as more than anxiety, aging, or “all your tests are normal, try meditation and drinking more water.”

Another one-in-something of the diagnosed actually rides this lonely current of misery into a pocket of familiarity. If we are the lucky of the unlucky, we hitch up into some kind of makeshift caravan to wheeze and rattle along together. Wherever we are going. (Does anyone know where we are going? When the hell we might get there?) 

When you have a virus that strikes hundreds of millions in one country alone, even small percentages add up to millions. Somehow, though, we are still difficult to see. That isn’t entirely on you or on the numbers. It’s not like we’re out parading in the streets. We’re very tired, you understand. And in pain. Excess noise exacerbates every symptom, plus we get dizzy when we stand up.

Many of us are stuck here. Stuck inside, stuck in bed. So stuck that we stopped going out. No more school, church, gym, friends’ houses. Forget about travel. Some of us can’t walk the dog or heat up a can of soup. Even a low-demand WFH job from a recliner in the living room is beyond imagining now for many. That’s why you may not see us on Zoom calls. Why you don’t hear back from us when you text. 

Which is weird, right? Because we used to be so active. Go-go-go all the time, posting photos from our last hike, sharing news of promotions or home renovations or art installations, drumming up excitement for a volunteer gig. Maybe we’re just super busy? Maybe you’re busy too and anyway, if something terrible had happened you would surely know. 

At some point, you stop expecting to see these missing friends or neighbors or colleagues. Letting go of expectation morphs into a kind of unintentional erasure. We fade as other priorities come into sharper relief. You probably trust we’ll reconnect again someday. Understandable: we’re over here holding out hope that we’ll feel well enough to reach out. You may think we prefer to be left alone so that we can recover in peace. For some of us, this is true. But even so. Erasure is lonely.

Our illness might unsettle you more than you can acknowledge. Even against rational awareness (it isn’t contagious, we aren’t going to reject you when you approach all awkward and uncertain), you still avoid us. This broken-down carnival funhouse we live inside of now is too strange, its floors too uneven. The friend or neighbor or colleague you used to know is replaced by this washed out simulacrum. Someone who doesn’t do much anymore, who even has a hard time stringing sentences together. 

Do you wonder if there is something we did to bring this on? Secretly speculate that we might be faking it just a little? Just below the surface, there’s a good chance you’re passing judgment about what we should be doing differently.  It may be hard to acknowledge your suspicions about this “illness” we say we have. We recognize this. We do this. We’re just as prone to skepticism about our very own suffering. Hell, we sure thought daily exercise and the right attitude could keep this at bay. We still wake some days thinking, “This is nuts, I’m FINE.” Until we get up and crumple. 

It’s terrifying to realize that what stands between you and disabling illness is as substantial as an oil slick rainbow. 

One of the many reasons you may not be seeing us is our own caution. Self-preservation is essential in a world that’s “moved on” from a virus that still has the power to do this to us. Doctor’s offices don’t even mask anymore. And we are so very vulnerable, living with a chronic disease that threatens to take us even further down (is it possible to go further down? Good lord) if we get exposed again. So we elect to stay in as much as we can. Even when we do stumble upon a small supply of energy, we portion it out one spoonful at a time. We stay close to home.

Caution shapes our new identity well beyond concrete safety measures. This world equates value with productivity. So we hide a little (or a lot). The ability to pay rent, cover health care bills, and keep our families fed is all tied up in being productive. Which is tied up in being seen as productive. What happens when we stop showing up as that hardworking go-getter with spark to spare? What happens when we become less competitive, less hireable, less full of promise?

The American economic system responds to disability with negligence and outright cruelty. Qualifying for benefits – an expensive process that requires lawyers and an approximately three-year bureaucratic odyssey – yields poverty-level income and crippling restrictions on your ability to change your circumstances.

As a result, we live caution. We offer up a facade of productive capacity even in the absence of it. We hint at other more respectable reasons for our fade-away: back surgery or another vague but temporary condition. We say we’re rethinking our academic plans, our career trajectory is shifting. Our kids are a full time job so we’re cutting down to part time work. Our aging parents need us to move in. 

All the while, we’re hanging on to whatever shred of protection we can get. FMLA if we qualify, hollowing out our retirement if we have any. Breaking our lease to accept the offer of a spare room from that one supportive family member. We do whatever we can for as long as we can to avoid the mark on our name. We know what can happen when colleagues, neighbors, friends become more burden than benefit. We don’t want to lose our say in how we will be seen, so it is safer not to let you see us. 

So yes, we are fading. But please know: we are here. We are finding our way to each other when we can, across these strange virtual distances. We are coming together in small conglomerations of fellow sufferers. We are creating lifelines, sharing knowledge of how to survive.

We could use your help too. Help retaining our edges. Help remembering the value we have – that all people with disabilities, mental health challenges, and chronic illnesses have – even when our tangible contributions aren’t easy to quantify. 

Find us. Listen to us. Trust us. Advocate for us. 

Stay with us. 

Help us know that we have a place not just with our fellow sufferers, but here. With you. 

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Photo by Jaroslav Devia on Unsplash