A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Wednesday, 23 May 2018

Accidents will happen


In between last week's blog and this one I've managed to fracture my fifth metatarsal. You know, the one that the footballers always seems to smash.

Sadly, it wasn't done in an impressively sporty way, but instead in an almost comedy fashion; a gas meter fell on my foot from a great height.

As you might imagine, it's quite painful and I'm now in a foot boot and on crutches.

I'm interested in how being visibly poorly is going to play out.

As MSers we are so used to the cries of “but you look so well!” that we'd be forgiven for having a flipbook to hand with photos of our MRI scans as a way of proving that we're actually not.

This time, there's no getting around it – there is a huge black boot at the end of my leg and I'm hobbling about on metal sticks.

And this is, understandably, so much easier for other people to comprehend. There is a visible issue so it's easier for people to relate, to offer support and to sympathise. It's easier for them to believe.

MS leaves few visible signs. Yes, I sometimes have a stick, yes, I have had to wear an eye-patch, but the day-to-day issues of fatigue, cognitive symptoms or emotional turmoil leave no obvious traces.

So it is not surprising that we're so often able to pass as healthy. The problems come when we're not believed.

There are too, too many stories of people with MS being refused the help they need. And this, I think, is either because there isn't the understanding – or there isn't the willingness to take the time to develop it.

I don't expect every person I meet to have an in-depth medical knowledge of my illness, I don't expect them to be able to list the symptoms, but it would be nice if, when presented with the fact I have it, people could take a few moments to chat to me about it.

I don't mind telling you, in fact I'll probably overshare, because without talking, listening and asking questions, how are we going to gain knowledge?

If we can't be open to the conversation, how are we ever going to understand?


*I have learned something from this experience. We went to see our daughter in a dance show at the weekend and since I'd just had the accident, we were able to borrow a wheelchair. Eye-opening.
Please don't carry on a conversation over the head of someone in a chair. Not only does it really hurt your neck as the sitter to keep looking up, it also makes you feel irrelevant and vulnerable.

No comments:

Post a Comment