Use your words – and hopefully we will endMS!

“In her book, Narrative Medicine: Honoring the Stories of Illness (2006), Charon says “It is sometimes as if the body speaks a foreign language, relying on bilingual others to translate, interpret, or in some way make transparent what it means to say”. For me, that absolutely hits the nail on the head! I have to be bilingual to translate my body to my medical team.”

This is a fantastic commentary on the difficulties of explaining symptoms to our specialists as MS patients.

mssingabout

I have a stomach ache. In August I started Aubagio and, a couple of weeks in, this stomach ache started. I went to my GP and of course I was asked to describe it.

Let’s put aside, for the moment, that one of my MS symptoms causes me to lose words. Let’s go this doctor’s visit on a “good” day.

“It’s this background noise most of the time, a grumbling, a tenderness, it’s something that’s enough to knock me off my stride. Then occasionally there’s these cramps. They’re sharp jabs. Knife stabs…. I’m still not sure I’ve described it correctly…”

“Okay… Perhaps we could start with you telling me where the pain is?!?”
And this is nothing compared to a trip to see my neurologist.

Let’s think of some of the descriptions that are commonly used during a neurological exam.

Tinglings. Pins and needles. Numbness. Ants walking on our skin.

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