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’….