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How long COVID sheds light on other mysterious (and lonely) chronic illnesses

0 2 years ago

The number of new COVID-19 cases is in steep decline in many parts of the U.S., but it’s still unknown how many of the people who’ve had the illness will develop the lingering symptoms of long COVID-19.

Journalist Meghan O’Rourke, who has been writing about long COVID-19 for The Atlantic and Scientific American, says as the coronavirus pandemic was starting to unfold in the U.S., she was dreading “the prospect of a tremendous wave of chronic illness that would follow.”

That’s because O’Rourke has firsthand experience living with poorly understood chronic conditions. That has made her sensitive to the struggles of patients living with hard-to-diagnose diseases who often have had their symptoms dismissed by a medical system that can’t pin them down.

Long COVID-19 can be similarly hard to characterize. The term encompasses “a wide variety of symptoms that persist long after the initial infection with the SARS-CoV-2 virus,” O’Rourke says. “Those symptoms might include chest pain, but they also include so-called vague and subjective symptoms like brain fog or fatigue and roaming pain in the body.”

The symptoms of long COVID-19 can be difficult to track on conventional lab tests, in part because they may come and go over time. “And all of this puts pressure on patients who then have to testify to the reality of their own illness,” O’Rourke says.

O’Rourke writes about her own experience struggling to get a diagnosis in her new book, The Invisible Kingdom: Reimagining Chronic Illness. For O’Rourke, it all started in the late 1990s, soon after graduating from college. Over the years, her symptoms have included extreme fatigue, brain fog, joint pain, nerve pain, hives, fevers and more. She visited a number of specialists, but more often than not, the doctors attributed what she was experiencing to stress or anxiety.


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