I felt, in a sense, kind of locked away in a room like a 19th-century hysteric.' '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.

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

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. '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 term encompasses 'a wide variety of symptoms that persist long after the initial infection with the SARS-CoV-2 virus,' O'Rourke says. Long COVID-19 can be similarly hard to characterize.

Invisible disabilities hysteria