Archived: I was young and healthy. A mild COVID infection changed everything

In March 2020 I contracted a mild COVID infection. I had just turned 30, was in perfect health and living “my best life.” The Centers for Disease Control and Prevention told me it would take two weeks to bounce back.

But it’s been 2½ years, and I’ve spent my entire 30s disabled by a post-infection illness — housebound and barely holding onto what little I can of my former life. I truly cannot relay the misery. 

In the early days of the pandemic, not much was known about the virus. We didn’t have a name for my post-infectious illness back then, but we do now: long COVID. Maybe at the time of my infection, public health officials couldn’t estimate how prevalent the well-documented phenomenon of post-viral illness was going to be — or heed the warnings of the myalgic encephalomyelitis/chronic fatigue syndrome community.

But we are now well past the point of plausible deniability and the fact there is still not a warning, in the face of overwhelming evidence of the prevalence and severity of long COVID, is unconscionable.

Since the start of the pandemic, this condition has disabled millions — and the first thing I still hear from most newly diagnosed patients is, “I had no idea this could happen, I was healthy, it was just a mild infection.”

At this point, that really shouldn’t be the case.

Earlier this year, the CDC released a study indicating that 1 in 5 people with COVID may develop long COVID. It is now understood to be the most common serious outcome from an infection and can leave patients with an array of debilitating symptoms for months to years. The CDC’s findings were corroborated by the U.S. Census Bureau, which found 20 million Americans are living with symptoms lasting three or more months after infection that they didn’t have prior, and according to data released by the CDC this month, 81%  of people with long COVID report difficulty with doing daily activities. Separate studies from the Federal Reserve and the United Kingdom Office for National Statistics further substantiate these findings, and most recently, the Brookings Institution estimated that up to 4 million Americans are out of the workforce due to the condition.

The problem is so grave that last year the National Institutes of Health dedicated $1 billion for research into the condition, and in August the White House announced the creation of a new national office for long COVID. Yet, according to a 2022 YouGov poll, 67% of American adults surveyed knew little to nothing about the condition. And despite physicians pleading for a federal health warning about long COVID, it is still nowhere to be found in our pandemic messaging.

The country has now lifted all remaining mitigation efforts. In California, Gov. Gavin Newsom announced that the COVID-19 state of emergency, “one of the most effective and necessary tools that California has used to combat COVID-19,” will end in February.

But the Biden administration is expecting 100 million new COVID cases this fall and winter, which could include up to 20 million new long COVID cases. If this condition is going to continue upending the lives of millions of families — leaving their health, jobs and livelihood in shambles — don’t we deserve a warning?

Dr. Bob Wachter, chair of the UCSF Department of Medicine, said that he is still continuing to mask because of the risk of long COVID. That seems like a pretty reasonable decision  — if you understand the risk — but as he recently noted, “I don’t think (the CDC has) done a good job explaining that at all.”

The public is now expected to navigate and assess pandemic risk on their own accord, but how can folks make rational, public health choices when they’re not informed about the most common adverse outcome from infection? Doesn’t everybody have the right to make the same informed decision that Wachter did?

Earlier this year Zeke Emanuel, the former White House COVID Task force adviser commented that if people thought their risk of developing long COVID after infection was 1 in 20, there’s no way they would take that chance, “that sounds too much like Russian Roulette.” Yet the most recent conservative estimates of long COVID prevalence in a healthy, vaccinated person infected with an omicron variant is at least 1 in 20, which is the same calculation Wachter uses.

So what’s going on?

With the election just weeks away, it’s clear the White House doesn’t want voters thinking about COVID as a primary concern. Last month, President Biden declared “the pandemic is over” and public health officials have been repeating that “we have the tools” to protect ourselves ever since. In this environment, it may not be appealing to roll out a message about the reality of long COVID — that up to 1 in 5 infected may develop a life-altering health condition, despite age, health, vaccination status or infection severity.

How might the public feel about unmitigated spread if they found out there are no treatments, clinical trials, financial support or medical outlook if they develop this condition? Maybe Emanuel is right — that they wouldn’t want to take that chance?

So what chance are we taking right now? There’s still much to learn about the condition, but researchers are closing in on the pathology, and nearly three years into the pandemic we now know enough about patient outcomes to start piecing that together. Studies show that 75% of long COVID cases result from a mild infection, 85% of cases still have symptoms after a year, only 27% of patients can work at the same levels they did prior to infection and 23% can’t work at all, patients often have a lower quality of life than lung cancer patients, vaccines modestly reduce the odds and repeat infections may increase the odds. We know anybody can get long COVID. And we don’t know how long it lasts.

California State Epidemiologist Dr. Erica Pan said COVID could be “an enormous disabling event,” so public health officials are clearly reading and believing this information, but they aren’t acting upon it or disseminating it.

The public is choosing to forego masks, boosters and other mitigation efforts with the understanding that they only need to worry about hospitalization and death. There is no informed consent around the risk they are taking on — they are victims of misinformation about infection risk and are unwittingly playing roulette with their health. Would everyone change their behavior if they understood the risk of long COVID? Maybe not, but Emanuel thinks so, Wachter is, and I absolutely would have — but isn’t this about letting people make their own choice?

The public has the right to know.

Charlie McCone is a long COVID patient and advocate based in San Francisco’s Sunset District. He tweets about long COVID @loscharlos

Correction: An earlier version of this article misspelled Zeke Emanuel’s last name and misstated the name of the Brookings Institution.