A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Wednesday, 21 June 2017

Enjoy the silence

Things it might be wise not to say to a person with MS.*
Think of it as a handy cut-out-and-keep guide.

Haven't you seen the news? There’s a cure!
No, no there isn’t. There are disease-modifying therapies that we can inject, swallow or be infused with that MAY reduce the likelihood of relapses but they are not a cure because a) they don’t stop all relapses and b) they do not repair old damage. There is, however, positive new research and new breakthroughs which may lead to new treatments – but these take a long time to become available to patients as they have to get through in-depth medical trials and licencing approval.

How come your new drugs aren’t making you better?
Because sadly that’s not how they work. They don't repair previous damage, they don't stop all relapses, they are disease modifiers that MAY cut relapse rates but they bring with them a whole range of really quite significant side effects which can actually make us feel more poorly.

So why don’t you just try a different medication, one that doesn’t cause side effects?
Erm, because there aren’t any.

Maybe you should try cutting out *random foodstuff*?
Obviously good diet and exercise is important, I’m not denying this; it’s more the disdainful/evangelical/judgemental proclamations over my choices based on reading one headline - and the assumption that I can’t research and find this stuff out myself as, you know, the actual person with the actual disease.

Maybe you should try adding in *random foodstuff*?
See above

Should you be drinking?
Please leave now. And order me a double on your way out.

Are they only keeping you in your job because you’re disabled?
While I can’t deny this hasn’t crossed my mind I would just like you to have a little think about what effect that question might have on someone.

I knew someone who had MS and they died from it.
Now why would anyone want to hear about that?

Oh yes, I’m tired too
Gaaaaaaaaaaaaaaaaaaaaaaahh.


*All of these have been said to me.



No comments:

Post a Comment