Once Bitten: the Silent epidemic of Long Lyme Disease

What if one of the worst epidemics of chronic illness was also it’s most ignored? What if that wasn’t entirely an accident?

[Photo by Erik Karits on Unsplash]

I reviewed Megan O’Rourke’s Invisible Kingdom last year for the Wall Street Journal. I chose to begin the review with a singularly impacting scene from the book:

She lay in the dark in the small hours of the morning, awake, wrapped in a fog, encumbered by never-ending fatigue as the world slept — a gray traveler in a gray world. In this cocoon, she would stare at her computer screen, browsing for imaginary outfits to be worn on imaginary outings. It was an act of longing, of sorts: an attempt to be the person she wanted to be, someone who could enjoy life free from pain. But the greatest ordeal — greater than the unexplained electric shocks that rattled through her body or the unbearable abdominal pains that kept sending her back to the ER — was her doctors’ denial that she was sick at all.

I started there, because this is the horror of having a condition no one understands — of being told it’s all in your head. It’s gaslighting at its worst. Megan did get a diagnosis eventually: Lyme Disease. But by then, she had a chronic form — she would…