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My sabbatical is now over and I'm back to work (and feeling much better, thank you). For my first piece back, I wanted to write about people who haven't had the option of taking 6 months off to recover. Long-haulers--people who have long-COVID--are still grappling with the long-term consequences of their infections, and the societal dismissal that ensues. Now, that dismissal is taking on a new form. From the peice:
Almost every aspect of long COVID serves to mask its reality from public view. Its bewilderingly diverse symptoms are hard to see and measure. At its worst, it can leave people bed- or housebound, disconnected from the world. And although milder cases allow patients to appear normal on some days, they extract their price later, in private. For these reasons, many people don’t realize just how sick millions of Americans are—and the invisibility created by long COVID’s symptoms is being quickly compounded by our attitude toward them.
What was once outright denial of long COVID’s existence has morphed into something subtler: a creeping conviction, seeded by academics and journalists and now common on social media, that long COVID is less common and severe than it has been portrayed—a tragedy for a small group of very sick people, but not a cause for societal concern. This piece addresses the gaping flaws in the most common downplaying arguments. It covers biomarkers, disability claims, the spectrum of severity, the oft-repeated “I don’t’ know anyone with long COVID” line, and more. At its core is a call to listen to patients. Their experiences are the ground truth against which all other data must be understood.
The piece also looks at why the marginalization of long COVID and related conditions morphs into new guises but never goes away. It challenges our belief in our institutions, because truly contending with what long-haulers go through means acknowledging how poorly the health-care system treats chronically ill patients, how inaccessible social support is to them, and how many callous indignities they suffer at the hands of even those closest to them. Long COVID is a mirror on our society, and the image it reflects is deeply unflattering. Most of all, long COVID is a huge impediment to the normalization of COVID. It’s an insistent indicator that the pandemic is not actually over; that policies allowing the coronavirus to spread freely still carry a cost; that improvements such as better indoor ventilation are still wanting; that the public emergency may have been lifted but an emergency still exists; and that millions cannot return to pre-pandemic life. “Everyone wants to say goodbye to COVID,” Duggal told me, “and if long COVID keeps existing and people keep talking about it, COVID doesn’t go away.” The people who still live with COVID are being ignored so that everyone else can live with ignoring it. I hope you'll read it. This is a crucial issue that deserves our continued attention.
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