Why Certain Illnesses Remain Mysterious

Invisible Illness Graphic

 

By Sarah Ramsay in The Paris Review.

 

When I first began research for my book about women with mysterious illnesses, I was overwhelmed. No two women were alike. The number of illnesses that qualified as mysterious was staggering. Lyme, post-treatment Lyme disease syndrome, candida, Epstein-Barr, Ehlers-Danlos, polycystic ovary syndrome, subclinical hypothyroid, dysautonomia, irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome, nonceliac gluten sensitivity, heavy metal toxicity, environmental illness, sick building syndrome—I had started out with the intention of exploring intestinal health as it relates to chronic fatigue and women’s health, but as soon as I turned on my headlamp, women with mysterious illnesses of all kinds came hurtling out of the jungle, like giant moths to a tiny flame.

And so one of the first things I ever did was come up with a clarifying top-ten list regarding the problems contributing to the mysterious marginalization of the mystery illnesses. This list was not exactly a clue in figuring things out, but rather a series of clues making it clearer and clearer that there really was a veil tightly drawn before anyone who was trying to figure things out.

More than a decade later, the list is still as useful as ever.

Problem 1: Invisibility

 

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