Through the recent experience of having a proper diagnosis to identify what has been happening, I started thinking a lot about the subject of how we need to shape and understand things - and how powerfully legitimizing it can be.
Recently, a woman here posted that her neuro said it can't be CH because she's a woman.
That dismissal must've made her feel even more alone on top of the unbearable weight of the pain she's already experiencing.
"There's the time when you know something is happening, but you're not sure exactly what. The illness before it's diagnosed. The era, before it's been given a title. And something changes when the name is given. Stories of that transformation...between what it is now, and what it was before it had a name."
As a society, we have a hard time accepting and understanding tragedy on its own without a narrative or context.
Anyway, I just heard this fantastic broadcast of This American Life called "Before It Had a Name" and it resonated enough that I thought it's worth sharing:
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