Catching COVID-19 for the first time this past November and experiencing the painful, debilitating symptoms of long COVID in the ensuing months made me realize how lucky I am.
Yes, the infection was rough, despite the fact that I was fully vaccinated and boosted, having had my last jab just two months before I tested positive. But the pain, confusion, fogginess, and other symptoms that kept coming long after I finally tested negative were much, much worse.
But I was lucky, because I knew that the illness that was robbing me of my ability to function normally wouldn’t also cost me my livelihood. Many other Americans with long COVID are not so fortunate.
A recent study published in JAMA Network Open found that people with long COVID are more likely to be unemployed, particularly if they suffer from cognitive symptoms that make holding on to full-time employment difficult if not impossible.
It’s the latest data point in a growing body of evidence of the persistent and long-lasting personal financial costs that can follow from catching COVID. Even if the nation is ready to move past the pandemic, long COVID will be with us for a while. And patients are paying the price.
“The medical community needs to be supportive of people” with long COVID, Dr. Davidson Hamer, a professor at Boston University School of Public Health and School of Medicine and physician at Boston Medical Center, said in an interview. “We need to provide medical and psychological support. But we also need to help people to get excused from their work, their studies, and help them fight the kinds of battles they might encounter so they don’t risk losing their jobs, losing their scholarships, and more.”
For weeks, long COVID made it nearly impossible for me to do the simplest tasks, let alone work. Concentrating on anything — a Zoom meeting, a conversation, a television show plotline — was strenuous and exhausting. My short-term memory was shot. I suffered bouts of confusion. I once got so disoriented during a short walk that I briefly did not recognize my own street.
Simple words would elude me when I spoke, or my brain would select the wrong ones — “accent” instead of “accept” or “comply” instead of “conclude” — making me sound like I was reading Mad Libs.
Then there were the nearly constant headaches that felt like an arrow had been shot through my head, temple to temple.
There were other strange symptoms — the loss of smell and a full-body itchy rash that made it hard to fall and stay asleep — that added insult to injury.
My doctor likened COVID’s lingering effects on me to a concussive brain injury, requiring rest, avoiding screen time, and old-fashioned patience.
But through all of this, I knew I could ask my editors and producers for the time and space I needed to heal and was grateful that they put my well-being first by granting me that. I have access to great doctors who have helped me navigate my illness as they are still learning about the complexities and variances of long COVID in real time.
I cannot imagine the fear and anxiety that losing my employment — and with it, my health care coverage — would have added to an already stressful situation. But far too many people are dealing with that very horror every day.
The US Department of Health and Human Services estimates that long COVID is affecting as many as 23 million Americans. As the federal government prepares to wind down the pandemic state of emergency in May, many with long-term symptoms will still be in need of urgent help.
According to the study in JAMA Network Open, nearly half of those experiencing long COVID have the kind of cognitive symptoms I did. The lead researcher, Dr. Roy Perlis of Massachusetts General Hospital, noted that those types of symptoms are often overlooked or dismissed. But, Perlis said, they are “important because they’re distressing to people, but they’re also important because they have real implications in terms of function.”
His is the latest in a series of studies pointing to the financial impact of long COVID. A report by the New York State Insurance Fund found that of the people who stopped working due to long COVID, 71 percent needed medical treatment for six months or more and 18 percent had still not returned to work more than a year later. And the vast majority of those unemployed workers were under 60 years old.
Public health officials, employers, and workers focused so much energy on how to protect ourselves and others from COVID-19 in the workplace, from remote working policies to testing protocols. But we haven’t given nearly enough attention to how to help each other work and heal after an infection. Employers, public health officials, and medical practitioners need to refocus on how to keep people healthy and employed, not just because it’s good for the economy but also because it’s the right thing to do.
My symptoms have dramatically improved in the weeks since I had to take work leave, even though I still sometimes — including while writing this column — labor a bit more to find the right words. But I’m glad to be back on the job. I wish for others to have the same kind of support they need to get back to theirs.
Kimberly Atkins Stohr is a columnist for the Globe. She may be reached at email@example.com. Follow her on Twitter @KimberlyEAtkins.