I have a real problem with this and I seem to have stumbled over it a lot recently.
Yes, we may belong to a hideous ‘club’, bound together by our lesions and twerks (twitching and jerking at the same time, gah) but does that mean we seal the borders and allow no one else in?
Ok, so no one without MS will ever understand what it’s like to live with it. Similarly, I don’t know what it’s like to live with more than one child, or to live with cancer or to live with an addiction to scratch-cards.
But, I would like to think that if I had a friend who confided in me about a particular problem, I would empathise and try to understand. If this friend then turned round to me and said, ‘you don’t get it, you’ll never get it’, I would beg to differ.
Problems have a funny way of overlapping; I don’t have cancer, but I resonated with the recent adaptation of ‘The C-Word’. I don’t have a gambling problem, but, boy, was it scary how quickly I fed $5 notes into a machine in Las Vegas.
By saying to anyone else without MS, ‘you just don’t get it’, you cut off a huge amount of support. I realise we will never convey the debilitating effects of MS fatigue, or be able to describe an MS hug. That’s life; we can’t experience everything in this world.
It’s just that phrase – it’s inclusive, a little small-minded and ridiculously hopeless. Unless we describe our symptoms and how they impact on our lives, how can we convey just what MS does to us? Can you imagine if I did this with The Teenager?
- I’m going to sleep. You won’t understand, you don’t get it, go away.
- Ok, I tripped. You wouldn’t understand. Leave me alone.
- So I dropped my mug of coffee. And?
How would that make him feel? Anxious? Frightened? Isolated? Why not let him into my life? Wouldn’t it make him a kinder, more well-rounded person? He doesn’t need to know everything, of course, but enough to not feel excluded.
Newly-diagnosed days are a great example. It is only by allowing the partner who accompanies the peep with MS in that we can begin to create more understanding in relationships. What we can sometimes forget is that MS doesn’t only affect us, it affects every single person around us.
So how about we lighten up a little? I will never experience the MS my father had. And for that I am grateful. But it doesn’t make me less of a person.