Back during COVID-19…” or “When COVID-19 happened…” are phrases you hear often today. In 2023, The World Health Organization (WHO) declared the pandemic phase of COVID-19 over. Statewide mask mandates were slowly lifted. Yet, a recent report cited by The New York Times stated that over 400 million people worldwide have experienced and continue to suffer the effects of a condition called Long Covid. For those still living with the debilitating symptoms of Long Covid, the pandemic never really stopped.
While precise numbers are difficult to track, as of Spring 2023 it was estimated that there had been over 687 million cases of the COVID-19 virus worldwide. The range of individual experiences is remarkable. Over 7 million deaths were confirmed, according to The New York Times (although The Economist believes it’s closer to 30 million due to undiagnosed cases in poorer countries). Others were lucky to survive but required hospitalization. Many reported flu-like symptoms, while some claimed that, despite testing positive, they were barely symptomatic.
Today, while the Mayo Clinic still insists COVID-19 poses potentially more severe complications than the flu, many Americans now view the two as essentially the same.
Not so for those living with Long Covid, which is described by the Center for Disease Control and Prevention (CDC) as a “serious illness that can result in chronic conditions requiring comprehensive care and may cause disability.”
Like COVID-19 patients, sufferers of Long Covid report vastly different experiences.
Here’s what many have in common: profound struggles with everyday life or a formerly active life that has nearly stopped altogether. In a post on X, for example, a user named Syd posted side-by-side photos of herself: one pre-COVID-19 in workout clothes, the other, wheelchair-bound, explaining in the caption how Long Covid has affected her life: “Before: young, healthy, happy, working out 5x a week. After: wheelchair, unable to bathe without assistance, unable to work, housebound and 95% bedbound.”
Another example is Dianna Cowern, who once described herself as a science and physics creator. In June, Cowern’s husband described her experience with Long Covid on X: “Two years ago, I married my smart, adventurous, curious best friend. I loved her curiosity and so did her 3M+ followers on her Science YouTube channel. Now, she’s been 100% bedbound with Long Covid for 1.5 years. She lies in a dark room, earplugs in, with only her mind and simple thoughts to keep her company. Now, she can’t talk, watch TV, read books, listen to podcasts or even music. She can’t tolerate visitors (even the faint smell of laundry detergent makes her sicker). It’s a kind of locked-in hell and there’s currently no cure for this disease.”
There’s also Joshua Roman, recently profiled in The New York Times. A premier professional cellist who, since developing COVID-19 in 2021, struggles to play at all, now carries a card with him after collapsing onto the floor during a concert that reads: “I’m living with Long Covid and I’m having a crash.” The card also includes instructions explaining what bystanders can do to help him in the moment.
Yet nearly as common as Long Covid sufferers are the deniers who challenge them. One comment under Syd’s post reads: “There is no such thing as Long Covid, they made it up.” From another user on X: “There is no such thing as Long Covid: There are hypochondriacs. There are attention-seekers.”
While many Long Covid patients have formed support groups to combat the rhetoric and find community, others have reported hiding the condition out of shame and stigma.
Another challenge facing Long Covid sufferers is that COVID-19, culturally, is becoming an afterthought. For those wanting to put the pandemic behind them, “attention [from COVID-19] has shifted,” Amitava Banerjee, a professor at University College London, told Reuters.
Yet according to experts, Long Covid is not only a very real condition — it’s affecting children. A recent USA Today feature chronicled the experience of Rose Lehane Tureen, a 16-year-old high school student from Maine, who spent a year of her post-COVID life battling crippling head pain, swollen fingers, toes and joints and temperature fluctuations. The article claimed she is among 5.8 million children in the United States who have experienced Long Covid symptoms.
Recent studies have shown Long Covid sufferers are at greater risk of cancer, with a “Good Morning America” medical correspondent explaining that Long Covid, associated with chronic inflammation, is a precursor to cancer because, like most viruses, it weakens the immune system.
Other tangential effects of Long Covid reportedly affect mental health. According to Yale Medicine, Long Covid can deplete serotonin, the mood regulator that helps stave off depression and anxiety. Meanwhile, a study conducted by Aix-Marseille University in Marseille, France, found a direct correlation between Long Covid and depressive symptoms.
One indisputable effect of Long Covid that affects all of us is its detriment to the American economy. A recent Yale study asserts that up to 14% of those with Long Covid have had to miss extensive work or quit the workforce altogether. Regarding specific figures, The New York Times estimates the condition incurs an annual cost of $1 trillion worldwide.
So, what medical progress is being made to temper or even end it? The New York Times says the approach to treatments has been the biggest hurdle since individual symptoms vary so greatly. A recent analysis published in the National Library of Medicine called for more research into treatments, disability benefits and workplace policies to accommodate those disabled by symptoms.
The National Institute of Health (NIH) continues to move forward with clinical trials, while many patients pursue their own remedies or try to participate in one of the many clinical trials taking place around the world.
Hope is not lost. There’s the RECOVER Initiative, created by the NIH, dedicated to studying understanding and hopefully finding treatments for all forms of Long Covid. Says Igho Ofotokun, a participating physician and professor of medicine at Emory School of Medicine in Atlanta, “Once we understand the drivers, we’ll be able to come up with targeted interventions.”
Among the online Long Covid community, patients share not only their frustrations and struggles but also their triumphs, however gradual and small. Thanks to a combination of treatments, one user posted: “I never dreamed it could be possible, but my #longcovid symptoms have significantly improved in the last 1.5 years.” Cowern herself recently shared some good news: “I still can’t get out of bed, but … talking for like an hour a day … listening to a little bit of audiobooks, a tiny bit of music, so I’m getting back my brain which feels amazing.”
