When her life was upturned by an accumulating array of confounding health problems, Meghan O’Rourke turned, like so many writers before her, to metaphor.
Her body wracked with fatigue was a mound of sand. Her descent into illness was Hemingway’s description of going broke: gradually, then suddenly. The chronically ill patient dejected after fruitless interactions with doctors was nearly invisible, and solitary. She saw the body, within the paradigm of Western medicine, as a car. “Its parts need upkeep, piece by piece,” she wrote in her acclaimed 2022 book, “The Invisible Kingdom.” In 15-minute pit stops, care is doled out, and the car sent to a different mechanic if the issue isn’t as simple as a tire change.
But in her decades-long search for answers about what was happening in her own body, O’Rourke, a journalist, poet, and teacher, found the limitations of such an approach. In her efforts to get diagnosis and treatment of what she learned was
POTS,
hypermobile Ehlers-Danlos syndrome,
autoimmune thyroiditis, and more, she saw the failures of the health care system in caring for people with chronic conditions.
