Use your words – and hopefully we will endMS!

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 with this doctor’s visit being 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. 

I often wonder if what I think is “pins and needles” is someone else’s “tingling”. And when I get that wooden feeling, (like my foot is a solid lump of wood…) is that numbness? How can we know that we are using the same descriptive language as the next person?

When asked to describe the pains in my legs I usually say “one type of pain feels like someone is wringing my muscles out like a damp dish cloth, and there’s another that feels like someone has poured boiling oil on my legs.”

Over dramatic? Moi?

But I suppose that’s better than when my neurologist touches one leg and then the other and asks me to compare how it feels.

“Different.” “Can you describe it anymore than that?” “Just… different… ”

Great feedback, Michelle. I’m sure that furthers the fight against MS immensely.

In order to accurately diagnose my symptoms, my neurologist has to take in these varied comments, perhaps even considering that my inability to describe the differences in the sensations in my legs is a symptom in itself, and distil it into something that makes sense in a medical context. Art meets science. An art in itself?
A former student of mine, and now a wonderful Facebook friend, Jaime Brenes Reyes, is a PhD student, studying Comparative Literature. Jaime also writes openly about his own experiences with seizures and his PhD research is looking at the links between Latin American short stories and seizures in the brain’s response to them both. Very cool, eh?

Through his research, Jaime introduced me to Narrative Medicine and the work of Dr Rita Charon, who is the Executive Director in the Program of Narrative Medicine at Columbia University.Jaime says that “Charon advocates a holistic relationship model between doctor and patient. For Charon, doctors need to listen carefully to patients’ stories in order to gain a better understanding of the conditions surrounding the disease.” 

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.

It seems to me that if we are to learn everything we can about MS, we must be able to “translate” everything that people with MS are telling their medical team. In turn, the medical team must be able to combine any evidence gleaned from MRIs and other quantitive tests with this very important qualitative information. MS is a disease where very little can be measure. No blood tests. MRIs only show part of the picture.

So the next time you see a doctor make sure that you “use your words” = and I hope that they have the skills to listen to them and realise their importance.