You know that phrase about MS, ‘If you don’t get it, you don’t get it?’
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.
As usual I find myself nodding and agreeing with everything you write. Well said. How on earth will anyone else understand if we just close ranks and speak only to other Ms’ers..who probably won’t always understand either as we all have such different symptoms. I don’t have foot drop but that doesn’t mean I can’t empathise with you. Same as I often have visual issues which I know you don’t have. Shall I just tell you that you won’t get it? This exclusivity, whilst often supportive is sometimes detrimental to us all. Anyway, rant over and thanks again for the blog. I don’t always comment but I always read it. Take care xx
Thank you so much! So glad you understand my ranty post!
And yes, if we don’t empathise with each other, where does that leave us? Especially our kids, partners, etc.
Exclusivity is great. Now and again. But for most of us, we have to explain, show, demonstrate just how MS impacts our lives. Sadly, lol.
X
It’s very true what you say. While spending time reading MS forums and blogs you do come across people who just want to moan. If it wasn’t MS it would sure as hell be something else. Living with MS is really really horrible and sometimes the best way to cope is rant and move on. Sometimes people forget that almost everybody else is dealing with problems and suffering in their own way too. I know my nearest and dearest don’t entirely ‘get it’ but they know me well enough to accept that I struggle. They believe me and empathise and likewise when I see somebody else struggling with a bad day (for whatever reason) they know I’ll be the first one there with a (half empty) bottle of gin and packet of caramel wafers.
What a lovely comment and so right!
I think sometimes we are guilty of not realising that other people have bad days too, like you said. I know I do 🙁
I also know that by sharing my MS in a positive way, my family and friends understand a lot more. I also rant and raves sometimes and they understand that too!
X
And laughter and exercise! Gets the endorphins (e) flowing. E’s free (the body produces it)- it’s not a drug. Yay!
Sounds good to me!
x
Well said!
Thanks Judy! Good to get it off my chest, lol.
x
Surprisingly I haven’t heard anyone with MS utter the phrase, heard it other situations tho.
Depending on the person obvs, I mostly tell it as it is with MS. If a person asks, I tell them and often they end up asking more questions about MS on the whole. They ask if I mind talking about it, and I say no, because more people need to know how MS can effect someone.
I hear it a lot! Almost like a badge of honour, which really annoys me 🙁
X
Once again, nicely said! I think you have hit the nail on the head.
I also think this relates to another phrase I’ve started to notice, when one person with MS says to another ‘your MS is not my MS’. Of course it is not. MS is different for everybody, and even different for an individual from day to day and month to month. But that doesn’t mean we shouldn’t talk about our experiences, feelings and symptoms.
Thank you!
Yup, I’ve heard that one too. Such a weird thing to say!! And probably the same for any disease, not just MS 🙁
x
So true……
I have recently started blogging about my MS from when I was diagnosed. I was surprised by my family reactions of “I didn’t realise” or “it is so good to hear you write about this and let is know about the MS” I feel that I probably was in denial and also embarrassed about it.
That’s brilliant! Blogging is a great way of coming to terms with MS. It’s been my lifeline and has also been so helpful for my family and friends!
x
I felt the same way about the slogan “I have MS, but MS doesn’t have me”. The “get it” phrase doesn’t bug me. I see it as a way to cope with people’s good, but failing, intentions. I’ll take as many ways to cope as I can find.
I know what you mean 🙂
x