Though COVID-19 may have retreated to the periphery of some lives for now, for tens of millions across the world it remains a stubborn, life-changing illness. Rather than the usual days or weeks that it typically takes to beat the coronavirus, those suffering with “long COVID” endure the sickness for several weeks, months or even years.
“The first couple of days I had what I assume is the normal COVID experience for the majority of people, and I started getting better,” says Victoria Radonicich, a 27-year-old nurse in Ontario who contracted the disease in January 2022. “But then on day 10 my lungs suddenly collapsed and I was left gasping for air. That's when my long-COVID journey started.”
When she returned to her job as a frontline nurse in a pediatric unit in April, Radonicich suffered a major setback that erased most of her recovery. It left her unable to walk, sleep or make her own meals. Now, months later, she’s once again made small steps toward progress. But her life remains a shadow of what it was before.
Radonicich’s latest milestone is being able to take short, slow walks. Yet her favorite hobbies — running and hiking — remain far out of reach. She adds that while losing her active lifestyle has been difficult, perhaps the hardest part of battling long COVID is being robbed of her profession. “I'm a very hard worker, so I felt like a failure in my own life,” she says, describing the deep bouts of depression the illness brought on.
Setting the Record Straight
While most of us have heard of long COVID by now, the enigmatic disease remains poorly understood. It is often assumed, for example, that only a small minority of people struggled to overcome COVID-19. Yet 10 to 20 percent of those infected are left with mid- or long-term symptoms, such as breathlessness, fatigue and cognitive dysfunction, according to the World Health Organization.
As of March 2022, the U.S. government estimated that between 7.5 and 23 million Americans were experiencing long COVID. As a result, approximately $50 billion in salaries is lost each year — representing around 1 million people who have been forced out of work.
It is also sometimes assumed that long COVID affects only the most vulnerable to the disease: the elderly and the unvaccinated. Yet health experts say it is impossible to predict for whom symptoms will linger.
Internet forums, which have transformed into a support network and source of information for long COVID sufferers, are brimming with posts from active twenty-somethings who have had their lives largely put on hold since contracting the coronavirus months or years ago. “I consider myself a very healthy individual,” Radonicich says. “I eat well, I exercise and don't have any predisposition factors for COVID, so I never thought that I would be at risk of long-covid.”
Symptoms All Over the Map
COVID-19 symptoms vary greatly both in type and severity, making the task of categorizing and understanding the many overlapping manifestations of the disease difficult for researchers.
ICU doctors often see organ damage and poor psychological health in severe COVID cases, but the scope of symptoms can be far wider, says Adam Gaffney, a critical-care physician and assistant professor at Harvard Medical School. The most common are neurological, such as brain-fog and headache, according to a pre-print study by King's College London.
The second-most reported symptoms were respiratory issues, such as shortness of breath, followed by a diverse range of seemingly unrelated symptoms, from heart palpitations and muscle pain to hair loss. “It’s not really a specific illness with a specific pathophysiology,” Gaffney says. “Rather, we're speaking about a wide spectrum of problems that people face.”
What unites long COVID-sufferers is a shared sense of exhaustion. Those fortunate enough to not suffer from post-exertional malaise (or PEM, as it is usually referred to in online forums), are likely confronting some form of emotional exhaustion — whether it's the loss of their profession, physical health or entire previous lives.
Unfortunately, the inability to pinpoint the direct causes of long COVID means doctors are largely unable to treat the illness, adding to a sense of hopelessness for some patients that it cannot be overcome.
Progress has been slow, Gaffney admits, but there are some reasons for optimism. For those capable of exercising, for example, physical activity appears to speed up recovery times, he says.
There is also no shortage of funding. In 2021, the U.S. Congress spent $1 billion on long COVID research. And in November, the U.S. Department of Health and Human Services requested another $750 million to fund investigation and treatment.
“On the one hand, it is challenging, and on the other hand, it’s not a challenge that is necessarily novel,” Gaffney says. After all, doctors must frequently treat patients with myriad symptoms for which the causes are tough to pin down. “It is something that general practitioners face in day-to-day practice,” he says, “even before the pandemic.”