Guaranteed 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’….
Hi Stumbles,
Another great post!
We all seem to seek something that defines us. Multiple Sclerosis can be such a large part of our lives that it seems logical to define ourselves in terms of MS.
For me, this raises two points. Firstly, to say “I am an MS …” relegates all other aspects of our lives to be the also ranks.
Secondly, as you allude to, the “sufferer” label so many people choose to use is so self detracting. I have thought over the same issues that you raise of these past six years and have elected to use “Archer, Photographer and MS Blogger” as my label.
X
Hey there Chris,
Thank you! It is an interesting concept, especially when MS, by it’s very nature, dominates most areas of our lives.
However, like you say, you would also like to be known for other things, not just the MS.
I abhor the ‘sufferer’ label and am astonished to see how widely it is used in the media – just google ‘MS sufferer and news’ and have a look! I think it is patronising and outmoded and should be relegated to history, lol.
Thank you for your comment!
X
p.s. I love the way you define yourself…
Fantastic post! Yes, words do matter. The way people who have illnesses are viewed in the wider culture so very often either subtly casts blame (should’ve battled harder!) or else infantilizes and diminishes (poor sufferer). It’s not helpful.
Thanks Ellen!
You’re right, the terms are not helpful AT ALL. And that’s a brilliant word – infantilizes. It’s exactly what it does. I cringe when I see the word ‘sufferer’ put before MS. It alienates us and marks us out as different and objects of pity. Meh.
X