Handling fear of long COVID-19
Since the initial omicron wave receded and inflation replaced COVID-19 in the headlines, the debate over reopening has largely been settled in favor of the reopeners. But the debate over the wisdom of reopening and unmasking hasn’t gone away. As COVID-19 cases rise again, there is still a vocal constituency that thinks too much normalcy is a public health mistake.
Of late, this constituency has shifted its focus somewhat, from the dangers of death (diminished by vaccination and immunity) to the peril of long COVID-19, the potentially debilitating chronic form of the disease. In a recent Washington Post essay, health policy expert Ezekiel Emanuel wrote that “a 1-in-33 chance” of long COVID-19 symptoms (assuming that for the vaccinated, which he is, about 3% of COVID-19 infections turn chronic) is still enough to keep him in an N95 mask, out of indoor restaurants and off trains and planes as much as possible.
As Emanuel concedes, there is a lot of uncertainty around long COVID-19. As with many issues, there’s also a noticeable intellectual clustering effect: People who still favor pandemic restrictions are more likely to emphasize its dangers, while mask-and-mandate skeptics seem more likely to suspect that it’s a kind of bluestate hypochondria.
I am, since vaccines became generally available, a pandemic dove who happily tore off my mask once planes no longer required it, which should make me primed for skepticism about long COVID-19. But at the same time, I also have extensive knowledge about chronic illness and its controversies, based on extensive personal experience, which made me a long COVID19 believer from the start: Its scope is uncertain, but it’s clearly real and often terrible.
From Emanuel’s perspective, I shouldn’t hold both of these positions. I’ve experienced in my own flesh just how bad a chronic infection can become: What am I doing dining out, flying planes barefaced, writing this column unmasked in a coffee shop?
It’s an interesting question, and it inspired me to do some back-of-the-envelope math about a different kind of risk — the risk my family takes by still living in Connecticut, a hotbed of Lyme disease, my own unwelcome chronic visitor.
The estimates for how often Lyme disease turns chronic range from 5% to 20% of cases. Call it 12% and you get a risk four times as high as Emanuel’s 3% estimate for COVID-19. But thankfully Lyme disease isn’t airborne, so your risk of being infected in the first place is much lower. If endemic COVID-19 ends up resembling the flu, your chances of getting it in a given year might be between 1 in 5 and 1 in 20, whereas your chances of getting Lyme are more like 1 in 700.
However! Here in Connecticut the incidence is at least three times the national average, and then there are six people in my household for me to worry about. So the odds of any one of us getting infected annually might be close to 1 in 40. Combine that family figure — maybe a slight statistical cheat, but I definitely worry more about my children than myself — with the somewhat higher odds of Lyme disease becoming chronic, and our risks are in the same general ballpark as the long COVID19 risks that Emanuel considers unacceptably high.
With that said, we do take precautions: We no longer live in the Stephen Kingstyle farmhouse where the eldritch powers of New England went to work on us; we check our kids for ticks; we’re extremely attuned to possible signs of infection. But we also lead a pretty normal Connecticut life — hikes, nature, danger — notwithstanding my terrible experience.
Maybe this is crazy, and we should have moved to Arizona. But the lesson I’ve taken from my Lyme-earned knowledge is that infection-mediated chronic illness may be so commonplace that to lead any kind of normal life is to expose yourself to risk.
For instance, we have new evidence suggesting that multiple sclerosis is linked to the extremely common EpsteinBarr virus; estimates of MS cases in the United States range from 400,000 to just under 1 million. Likewise, chronic fatigue syndrome may well be touched off by viral infections; estimates of its victims
range as high as 2.5 million. Start tallying up the myriad other chronic conditions that might have some infectious root, and you could make a case for Emanuel’s level of caution just based on pre-COVID-19 threats.
But that’s not how human civilization has traditionally dealt with chronic dangers. We take unusual precautions during unusually deadly outbreaks, but where dangers are persistent, we look for ways to treat and cure while otherwise trying to live our lives as normally as possible. Certainly we don’t look back at images of an 18th-century court or coffeehouse, when the risks from infectious disease were greater than anything we know, and say: “Why aren’t those people wearing masks? Why did they ever leave the house?”
Chronic illness is a great scourge, which long COVID-19 has helped bring into the light, and it cries out for better diagnosis and better treatment. But doing the math and knowing the danger won’t keep me from showing my face on planes and in restaurants or my kids from walking — carefully, I hope — in Connecticut’s state parks.