How long COVID sheds light on other mysterious (and lonely) chronic illnesses
The number of new COVID 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.
Journalist Meghan O'Rourke, who's been writing about long COVID for The Atlantic and Scientific American, says as the 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 first-hand experience living with poorly understood chronic conditions. That's 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 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 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 the new book, The Invisible Kingdom: Reimagining Chronic Illness. For O'Rourke, it all started in the late 1990s, soon after graduating 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.
"The hardest part of being ill was that I didn't feel I had any advocate on my side who even believed fully in the reality of what I was describing to them," she says. "When you're at the edge of medical knowledge, the lack of evidence is treated as evidence that the problem is you and your mind. ... I felt, in a sense, kind of locked away in a room like a 19th-century hysteric."
Eventually, O'Rourke found a team of doctor who she likens to "detectives at my side." She was diagnosed autoimmune thyroiditis, a disease the body begins attacking the thyroid, as well as with Lyme disease and the genetic condition Ehlers-Danlos syndrome.
For O'Rourke, just getting a diagnosis felt like a triumph. But she acknowledges that many others who suffer from chronic illnesses don't have the same resources to continue seeking treatment.
"It's really clear from research that in fact, social structures are a major factor in all of this," she says. "I think we're witnessing a calamity that is one not of personal failure, but of societal failure and one that we really need to reckon with openly."
She spoke with Fresh Air's Terry Gross about her new book, chronic illness and long COVID.
