Two Households, Both Alike in Indignity: An Interview with Anne Ursu (Literary Hub)

[ahimsa]

From Literary Hub:

Two Households, Both Alike in Indignity: An Interview with Anne Ursu

Anne Ursu is the author of Not Quite a Ghost, a middle grade novel about "an eleven-year-old, Violet, who comes down with a post-viral illness"

It's hard to pick a section to quote, but here's one that seems to stand alone:

One of the curses of this illness is that there are simply no adequate words to describe what’s happening, and so we’re left with inadequate words that diminish the severity of the experience; everyone has fatigue, right?

So I tried very hard to show how these symptoms feel though honestly writing those parts were very difficult. I didn’t want to put myself in those feelings again, and I’d honestly blocked a lot of it out.

Also, you truly cannot separate the personal experience of having this disease from the social experience of it. ME/CFS and other postviral illnesses simply don’t fit into societal narratives about how sickness works, and people get real uncomfortable when something doesn’t fit into their narratives. Illnesses have definable symptoms and physical signs, they can be tested for and treated (or at least managed).

The idea that you could just become completely disabled out of the blue with something no one understands or can treat is a truth unpleasant for people to grapple with. And for many in the medical profession, it’s easier to blame the patient than recognize there might be things beyond their knowledge and abilities. For the patient, this means dismissal and denial.

 

[Sean]

The idea that you could just become completely disabled out of the blue with something no one understands or can treat is a truth unpleasant for people to grapple with.

And terrifying, which it is.