What do you think when you see a 42 year old woman with a walking stick?

By JILLIAN KINGSFORD SMITH

This time last year I was diagnosed with MS. It’s only now that I’m starting to be a little more vocal that I’m living with MS because inevitably, whenever I do explain why I’m using a walking stick, people tilt their head slightly to one side and tighten their lips as if to say “Oh you poor thing.” In fact many do actually verbalise their pity for me. It’s enough to make you want to invent another reason why a healthy-looking 42 year old woman requires a walking stick.

I’ve spent the last 12 months interviewing fellow MS sufferers around Australia about their own journey with this chronic illness. One thing we’ve all agreed on is that we don’t want to be pitied and we certainly don’t want to be called ‘MS sufferers.’

The other consensus was that everyone is fed up with the stigma attached to MS. There wasn’t one person I spoke to who, when told they had MS, didn’t immediately think they were going to end up in a wheelchair.

MS is a disease of the central nervous system or a process that involves an inflammatory demyelinating condition that causes lesions on the brain or spinal cord. The best description I’ve ever heard of MS comes from one of my favourite television shows ‘The West Wing.’ Jed Bartlet, the president of America, has MS and his wife Abbey, a doctor, describes MS as the immune system shredding his brain. Depending on where these lesions form will generally determine the types of symptoms you end up with. Symptoms can include anything from loss of sensation in various parts of your body, loss of mobility, cognitive dysfunction and fatigue and vision issues.  MS affects me greatest in that I can’t feel my left leg, and hence can’t feel the foot hit the ground when I walk. I also experience huge issues with propreaception or spatial awareness. The result is that while I can physically walk around quite well, everything always feels off balance and without a walking stick I weave around, surely looking like a drunk. The other thing is that if I’m in a crowded environment, such as a shopping centre or an airport, my brain has trouble processing people walking around or towards me and this throws me off balance. In these situations the walking stick serves to deter people.

That’s the funny thing about walking sticks and wheel chairs. People are dead scared of them. I know I was. No one wants to get too close in case it’s contagious. I also believe we’ve turned the wheel chair into the universal icon for disability despite the fact that disability comes in many forms.

There’s another word us MS-ers don’t care much for: disability. But I understand the need for a label, at least in the political sense. I’ve often hear MS being described as the invisible disease because it affects people at a much deeper level than just the loss of mobility. Most people living with MS experience severe cognitive and physical fatigue and this is where the challenges lie.

So getting back to this fear that we all felt towards wheelchairs upon being diagnosed. You want to know why everyone had that image in their mind? It was because the various and numerous ‘advocacy’ groups around the world use it as symbol to illustrate our ‘plight.’ I questioned one such charity about this strategy and to my utter disbelief it was explained to me that they believed by using pictures of people in wheelchairs in the marketing material it would make people feel sorry and thus donate more to the cause.

Now I don’t know about you, but there’s no way I’d want anyone to feel sorry for me in order to help. Empathise maybe but pity….absolutely not.

MS affects some 23,000 people in Australia with the knock on effect being far greater. It seems everybody knows someone with MS yet at the same time we don’t really know a lot about the disease itself. All the courageous people I interviewed for my book have their own unique and quite amusing stories for how they deal with the stigma attached to MS.

Hayley, one of those I interviewed, told me about being wheeled around a shopping centre in a wheel chair during one of her MS episodes and was increasingly annoyed by the looks of pity and confusion people directed her way. In the end her Mum went into a pharmacy, bought a big, white bandage and wrapped her legs so as to give people something else to look at and thus conclude what was wrong with her.

Notable Australian comedian Tim Ferguson has a plethora of witty come backs for when people ask what is wrong with his leg. He’ll reply ‘Nothing. What’s wrong with your hair?’ or one of my favourites ‘I got attacked by a great white shark. Didn’t you read about it in the newspapers?’ Although that backfired on him once because the guy quickly replied that it must have been a pretty small shark….

Jeanie, who lives in a rural community in New South Wales, is often asked if she’s ‘recovered’ from her MS yet?

And universally all of us living with MS enjoy when people tell us how well we look. It sounds like such an innocent comment, and I know it’s certainly intended to be delivered in good faith, but I often wonder what people expect us to look like? I have MS, but that doesn’t mean I don’t want to look and be healthy. I’m not dead yet! And frankly, you can’t die from MS anyway.

Being the largely invisible disease that MS is, people can’t reconcile when a person looks young and healthy but still can’t function at the level they’d like. As a community of people living with MS we’re really lucky to have great ambassadors. These are men and women who are just ‘getting on with it.’

Naturally, in celebrating this year’s World MS Awareness day I would hope for a cure. But to be honest, I equally hope everyone learns just a little bit more about this disease and that we start removing the stigma attached to it. If you see me or one of the other 23,000 people in Australia living with MS, don’t grimace and express how sorry you are. Simply smile at us and ask how we’re going today.

Jillian Kingsford Smith has been a journalist for nearly 20 years. Her writing has been published internationally and she has just released her first book titled ‘Taking Control: A Collection of Inspiring Stories for People Living with Multiple Sclerosis,’ available on Amazon or at www.take20stories.com