Lingering symptoms from the coronavirus may turn out to be one of the largest mass disabling events in modern history.
By Fiona Lowenstein and Hannah Davis
Fiona Lowenstein is a journalist and the founder of the health justice organization Body Politic. Hannah Davis is an artist, researcher and founding member of Body Politic’s research partner, the Patient-Led Research Collaborative.
Both of us developed Covid-19 last March in New York. We didn’t know each other at the time, but we had much in common: We didn’t imagine our symptoms would last for more than a couple of weeks. We were young and otherwise healthy, and were told we should recover easily.
But after Fiona’s shortness of breath subsided and she was discharged from the hospital, she developed new symptoms ranging from gastrointestinal problems to rashes and hives to migraines. A few weeks later, Hannah began experiencing fevers, headaches, memory lapses and a debilitating brain fog that made her unable to work.
By April two truths had become evident: We were not getting better, and we were not alone in our experience of lingering symptoms.
We met online after Hannah read Fiona’s account of long-term symptoms, and in the past year, we have become self-educated experts on “long Covid,” the term patients prefer for long-term symptoms related to Covid-19. Not all of our doctors believed us, but together with thousands of other people we met online, who were all experiencing similar symptoms, we researched our conditions, lobbied for treatment and formed a support group.
Researchers have now established that long Covid is a debilitating condition with full-body symptoms that can range from monthslong fevers to respiratory problems. The National Institutes of Health recently announced an initiative to study it. Many sufferers are unable to return to work or care for themselves or their loved ones and will likely require long-term medical attention.
Yet, a year later, we still struggle to be taken seriously by friends, family members, clinicians and policymakers. People are sympathetic, yet few think long Covid can happen to them, or that it will affect their post-pandemic life. But the long Covid is not a footnote to the pandemic or a curious human-interest story. It is America’s next big health crisis, and we should prepare for it now.
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