A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Wednesday 24 January 2018

Violently (Your words hit me)


I’m not a violent person. I’m really not.

I like peace and harmony and calm. I do my best to avoid confrontation and would happily live in a quiet place appreciating the small and gentle things.

And I’m pointing this out in my defence because recently I have been overwhelmingly tempted to twat someone with a spoon.

Twat them. Very hard. With a spoon.

This unexpected cutlery rage came about during a group meal with someone I don’t see that often.

Conversation was flowing when the person (aka spoon twatee) enquired after my health. Very polite, I thought, very kind.

Until the chat suddenly and unexpectedly landslid into how they sort of knew someone who had died from MS and spent their deteriorating years being nursed in a care home.

But who, despite this, was apparently hugely positive about things.

And this, so the speaker pronounced with a confident flourish, was absolutely crucial advice for chronically ill people and was in fact, the mind over matter key to coping.

Gaaaaaaaaaaaaaaaaaaaaaaahh.

Now I don’t dispute for a moment that our emotional attitude to our illness is of some importance.

I don’t dismiss the benefits of thinking positively. (Albeit within reason – there needs to be a dose of realism attached.)

And while I don’t use them, I’m not going to knock those positivity CDs, inspirational quotes or life-affirming mantras – whatever gets you through the day, quite honestly.

But a person without MS feeling they had the right to pontificate on how I, the person with MS, should deal with the actual ruddy MS is a bit much.

The suggestion that the secret is to just smile through the pain, the loss or the general effing arsewaffle of this disease is the one that made me itch for the spoon.*

However, as a peaceful person I didn’t want to cause a scene, so I gritted my teeth, smiled vacantly and the conversation moved on.

But it has made me wonder about the thinking behind making such a statement.

Might it be:

  • not understanding
  • desperately trying to say something to cover the uncomfortableness of not understanding  
  • just not thinking
  • liking sound of own voice
  • assumptions based on impressions from ‘someone I sort of knew’ rather than taking the time to listen to how that someone is actually affected
  • pseudo-scientific flimflammery cobbled together and half-remembered from something read a few years ago
  • preferring to belittle or dismiss actual experiences because there’s a simpler and easier and all-round nicer-sounding option – even if it’s not true
  • illness is boring, symptoms are boring and disability is boring and it would be a darn sight better for everyone if it were not seen and not heard.

The problem being, of course, as you make your way down the options, you’re heading deeper and deeper into dangerous territory.

And whether intended or not, you’re at risk of slipping into dismissal and censorship, ignorance and prejudice.

And that is enough to make even the meekest among us reach for a spoon.




*For anyone hoping to avoid any cutlery-based violence, this handy cut-out-and-keep guide might be of use.


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