Tag Archives: media

What MS Isn’t

dancingThere’s plenty written about what MS is, but what isn’t it?

It’s not:

  • An ‘easy’ illness (I’m probably not the only person to be told, ‘Well, thank goodness it’s nothing more serious, eh?’)
  • An excuse – it is what it is and I won’t be apologising for it
  • A competition – why tell me your MS is so much worse than mine? If it makes you feel better, go ahead; it just makes me feel guilty
  • Always obvious – if you passed me in the street, you would have no idea I had MS (until I stumble, but hey, I could be drunk?)
  • Cushy – you might think enforced sofa-dossing is a dream come true, I hate it with a passion
  • The same for everyone – put 500 MSers in one room and you’d have 500 different stories

Recently, stem-cell treatment for MS has hit the headlines, and how – all the tired phrases were rolled out: ‘MS sufferer’, ‘cut down in the prime of life’, ‘tragic’. Funnily enough, I am none of these. However, I have been contacted by various people over the last few days all telling me the same thing – MS is curable! You can get back to real life now! You can dance again!

Now, anyone who has ever seen me dance will know that this is not necessarily a good thing. The only shapes I throw are the bodies of other people across the dance floor as I bump into them. Yes, the news from the trial is wonderful and I couldn’t be happier and of course the media loves a good news story, but behind the headlines there are thousands of us, millions of us across the world, just trying to get on with life.

MS, and more importantly, living with MS, has changed phenomenally over the last three decades. Sadly, the public perception of it is lagging far behind. Behind every diagnosis there is a unique life story and we don’t want that to come to an abrupt halt just because our brains threw up one lesion too many.

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Access Denied

Randy McNeilCanadian Randy McNeil is my guest blogger today.

He was diagnosed with MS in 1999 and was given chemotherapy treatment, Clyclophosphamide.

After having to give up his career as an industrial millwright mechanic, he returned to college to study community justice and services. And this is where he was confronted with a new set of problems…

Wheelchair ramps – they can be the best thing. When I was still walking, I was happy to see them becoming more commonplace for people with mobility challenges. Then in 2006, MS changed my life by taking away my ability to walk. Suddenly I now had a disability and a new way of life bestowed on me.

I accepted this and got an A-4 Titanium wheelchair, started a new journey and went back to college.

Whilst there, a new building was being constructed and I thought, great, it’ll be built with a better standard of accessibility than the other buildings on the campus. In fact, it was worse. I got the construction superintendent to come over to the ramp in question and challenged him. His reply?

‘I’m not going to argue with you, it’s been passed by the building inspector.’

‘Well get into this wheelchair and show me how you can use the ramp.’

‘I can’t do that.’


‘I’m not as strong as you are….’

  • Unable to get any further response, I went to the newspapers – read my story here and see for yourself the excuses they came up with!
  • After graduating, I began travelling around on public transport and discovered a problem with community accessibility – just because a bathroom has grab bars does not make it accessible. Again, I got nowhere and contacted the newspapers. This got results immediately and they changed the bathroom stall on the same day! Read about my success here.
  • Next, I took on the local mall – why should I take my life in my hands just to get there? Read what happened next.

Why stop there? I have now started a global petition to persuade Google to include an accessibility option on its worldwide maps. Please take a few seconds to add your signature.

Together we are stronger.

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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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Does MS Make you a bad mother?

This is not a post about the horrendous shootings in America. This is about a news story that appeared a few days ago, reporting that Nancy Lanza, the mother of Adam Lanza, had been diagnosed with MS – read the article here.

Two things bother me about this ‘story’. First, the headline screams out MS, but does not actually mention much about MS at all. So why the sensationalism? What does the fact that she had MS add to this article? Or rather, what is left unsaid, hanging in the air?

Second, the article states twice that she ‘suffered from MS’. The use of the word ‘suffer’ implies a victim, a helpless person. I agree MS is far from pleasant, but I don’t feel I suffer from it and neither do most of the MSers I know. We live with it and we are not victims.

My heart sank when I read the story and I felt tainted by it. Media representation of people with MS is a hit and miss affair. Recently, us MSers have been lucky. Jack Osbourne has raised a huge amount of awareness by telling the world he has MS yet even he had to fight back against media articles stating he was dying from the illness. Amy Winehouse’s mother has MS and raises funds for research. Mitt Romney’s wife Ann has also put MS on the world stage during the recent American elections.

Now though, MS has been inextricably linked to one of the worst mass shootings in an American school. The article does state that she was a ‘devoted mother’, so perhaps we are being urged to see the pathos in the family situation. A dedicated mother, battling on to help her son, despite her MS. Yet this too is patronising and I find it uncomfortable to see news stories like this in a week that will bring funeral after funeral of innocent children.

There are many villains in this story, but MS is not one of them.

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