Tag Archives: MS sufferer

I’m Not Special

carpe diemI have MS.

I’m not special. Or different. Or ‘suffering’, the word I hate most when referring to people with MS.

I am me. L’il ol’ me.

My brain may have taken an extended leave of absence and dotted itself with lesions, but I remain … me. Quintessentially ME ( I love that word – ‘quintessentially’, not ‘me’ ).

I think I have now  – gulp – come to the understanding that MS is here to stay. Yup, it took a while, but I can’t show it the door so what are my options?

Well, I no longer mourn what could have been, what should have been. What’s the point? Besides, my brain has forgotten so much and just struggling to remember life pre-MS is a stretch. I could have done what so many people told me to do, ‘whaaaay hheeeyyy! Give up work why dont’cha, you’re disabled, like, d’uh’.  MS is up there, among the most serious of illnesses.

And for a very long time, it was all-encompassing-serious to me. And of course, in some ways it still  is, as it pokes its way through everyday life; the stumbling, the agonising nerve pain every evening, the dropping, the falling, the garbled speech. Never underestimate MS. But it doesn’t make me special and it doesn’t mark me out as different to any other person with their own unique agony, whatever it may be.

If you had told me three years ago that I would, in my late 30’s and (very, very) early 40’s spend most of my time on my back, I would have been alarmed. Now, I am savoir faire with fatigue and all it entails; I know and recognise the signs. The sofa is my command centre and I have everything to hand, although the pesky cat has now taken up residence on the other sofa, out my reach since I de-flea’d her.

I’m not special yet I am acutely, horribly aware that I  have surpassed my father’s MS by six years, not only in terms of his age, but also the seriousness of the illness as he was living in an era before disease modifying drugs. So I refuse to be defined by MS. I am a heck of a lot more than that. The secret to controlling this awful illness is to do what it least expects you to:

  • Get out there. Make new friends. Try new things. Surprise yourself.
  • MS is cruel, there’s no denying it. But don’t deny yourself any experience, no matter how ‘trivial’.
  • Allow MS to throw into sharp relief all you want to achieve in life.

I am not suffering from MS. I thrive in spite of it.

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Do You Suffer From MS? I Don’t.

suffering from MSGuaranteed to set my teeth on edge, the term ‘MS sufferer’ is up there with ‘But you look so well’ and ‘Oh, I get tired too.’

It makes for good copy – by starting an article with, ‘MS sufferer Mrs Jones….blah blah blah’, the reader is immediately directed to feel a certain way – pity, thank god it’s not me, poor thing.

Well, here’s the real news – I don’t want to be pitied. I don’t want anyone to look at me with big, sad eyes or vicariously imagine how my life is.

The media has a lot to answer for. Most of us who live with MS fly under the radar. We get on with life, we hold down jobs, we raise families, we cope. We don’t want to be lumped together in a mass of misery.

It’s similar to the pressure people with cancer can feel under to ‘fight back’ against their illness and if they ‘fail’, well, they fought a brave battle, didn’t they? Perhaps because MS is at present incurable, we are not urged to fight back, just suffer instead, hopefully in silence.

I am many things. A daughter, a mother, a colleague, a student, a friend. I also happen to have MS, I just don’t feel the need to qualify the term.

I’m not saying life with MS is easy. It’s anything but. Yet by labeling me a sufferer, I am instantly at a disadvantage, pushed into the role of a hapless victim, MS being the only defining feature of an otherwise fulfilling life.

So how should we be known? Well, it depends on the context. If someone is talking about me as a mother, then I’m a mother, not a ‘mother suffering from MS’. If it’s about my job, then I’d like to be known as an excellent worker, not ‘working despite suffering from MS.’

And if the conversation is simply about MS, then just call me a ‘person with MS’. Or if you want to be really kind, ‘that fabulous person with MS’….

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