I know social media is an echo chamber. But there is some relief in that when it seems the world around is living in a different reality. Take for example the risks associated with COVID infection. The risk of getting a stroke, heart attack, brain atrophy, debilitating fatigue, postural orthostatic hypotension, connective tissue disorders, diabetes… The risk of losing your job because you are missing too many days and you can’t prove you ever had COVID, let alone that you have #longcovid. The risk of not being able to do the sport you love, or the hobby that gives you a break from the world… ok I’ll stop, but those risks are real. And most people don’t know about them, or if they do know, they think it’s rare or that it can’t happen to them, or that if it was likely to happen to them that the CDC or the president would have told them by now.
Wrong, no no no.
But some days, I think, maybe everyone that is wandering around without a mask, looking at me funny for offering them a rapid test and continuing to mask… maybe they are right and I’m just a fear-mongering conspiracy person.
So then I do a little doom scrolling on Twitter. Somehow, I ended up following a lot of people that have #longcovid (I clicked a tweet and clicked follow) but longcovidkids? That seemed worth looking at, and a doctor describing her personal long covid battle intrigued me too. And then suddenly I found that I couldn’t open Twitter without seeing another desperate cry about how longcovid was destroying someone’s life, someone committing suicide, someone who could no longer get out of bed, someone whose colleagues dismissed them, or who was let go from a government job, or whose insurance was denying care or who waited two years to get into a #longcovid clinic only to be told to exercise more… devastating, then more devastation, heartbreak. Children, that’s heartbreaking, not going to school anymore, not participating in sports anymore, home in bed because of going to school for a day.
I thought about taking Twitter breaks but then I realized, these people are the ones telling the truth. Is this the only outcome of COVID? No, of course not, some people are fine… we think they are fine — they feel fine. (Studies show every single child tested had damage to blood vessels, and people who didn’t have severe acute covid symptoms have brain atrophy….) but maybe some people will be just fine. Certainly today, some people who had covid feel just fine. Sometimes it takes weeks to months but then they feel just fine. On the other hand, sometimes it takes weeks to months for #PASC (post acute sequelae of covid) to manifest.
I’m a doctor and my work is a little different than the average doctor. I work with patients with complex, chronic, and often undiagnosed conditions. So I’m not the least bit surprised by what I’m hearing. What surprises me is that so many people don’t hear it. Don’t believe it when they do hear it. Don’t seem to care when they do believe it. Don’t seem to understand it can happen to them, even if they care.
If you are on Twitter I recommend you check out a few #longcovid people. And Wake the fuck up. COIVD is a bad dog thanks to those of you sharing your experience, it helps me feel less crazy.
In the meantime, I’ll keep writing about COVID and #longcovid. If you want to know, keep reading.