Friday, April 13, 2012

Two little letters

What do the letters MS mean to you?

Microsoft? I think we will all recognise that one.

Manuscript? Many of my writer friends will relate to this.

Or multiple sclerosis? How many people really know what this means, I wonder. That question hit home the other day, when I had to explain my hidden disability.

Right from the beginning I've not been shy about my diagnosis. After all, I did announce it online and I've subsequently written an article about it. This approach would not be right for all, especially people whose employment might be put in jeopardy, but I'd rather that people knew that the underlying reason for wobbliness or occasional slurred speech is illness or MS fatigue, rather than assume I'd had a surplus of alcohol.

On Monday I took the bus into town to shop. I had a number of errands to run and was tired even before I started out. Waiting at the bus stop a lady smiled at me, but we didn't engage in conversation. Later that afternoon, when I was too exhausted to walk any further and the rain had started, I headed for home. On my bus I found the same lady, who pointed at the disabled seat next to her.

"I saw you in Marks & Spencer," she said. "You looked as if you were in pain."

I explained to her that I have multiple sclerosis, that walking is very tiring and can be painful due to stiffness and spasms, which aren't always well-controlled by my medication. I joked that on that afternoon I'd staggered from one bench to another and she said she'd often seen me out and about locally, walking at my very slow pace.

It was a bit of a conversation killer, to be honest. Most people don't have much idea what MS is like, especially in the earlier stages. The fact that each person with MS is affected in different ways doesn't help either. Before I was diagnosed I had imagined that the majority of people with MS were in wheelchairs, but that is definitely not the case.

We both got off at the same stop. My lovely fellow traveller, who looked considerably older than me, shot off at high speed, while I made my way slowly and painfully home to crash out on the sofa.