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How do you raise awareness of multiple sclerosis, when MS varies so much from person to person?

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Helena Jidborg Alexander who works in our MS Trust Web team and is a person with MS ponders the question of raising awareness of MS

Two nights ago I was watching People’s Strictly featuring dancer and MS Campaigner Trishna. I decided that I wanted to do some live tweeting from the MS Trust Twitter account as I saw this as a good opportunity to raise awareness of multiple sclerosis. As a person with MS myself, I was very excited about the idea of “one of us” being on such a widely watched show. Surely this would be a great way of making the general public more aware of a condition like MS!

Trishna herself is an avid MS awareness raiser and has taken part in several videos that we at the MS Trust have made about MS in the past , I think she is a great spokesperson. But I realised as I was tweeting that there were some people that felt that this wasn’t raising awareness of MS, or at least not their MS. “How can I even contemplate dancing, when I struggle walking” were some of the comments. I have seen a similar backlash when I, as a member of the MS Trust Social media team, have posted stories about some amazing people with MS that have done extraordinarily things such as running marathons or climbing mountains. The people who can’t do these things and let’s face it, there are quite a lot of us, felt like people with MS are portrayed as some super heroes and that wasn’t what their day to day life was like at all.

MS in the Media

When the media picks up stories about people with MS they often pick up on the very extreme cases, there will be your “Super Hero” stories or there will be the scary stories about the very severely affected , who might be very limited in what they can do. But the fact is that people with MS are can be both these ends of the spectrum, and most of us will be in the middle rather than like the cases reported in the press.

So how do you raise awareness of something that is so varied?

There isn’t one person that could become the poster boy/girl of MS. If you looked at me you wouldn’t be able to guess that I have MS, but my grandfather who had MS as well, could not walk and was in a wheelchair, and might have been easier to spot in a line-up of potential MS’ers, if you had asked the general public. A lot of us with MS live with it as an invisible illness, Trishna herself talked about her MS fatigue a symptom I know far more than I want to. It is a symptom that can really affect your life negatively, yet it is very hard to explain to people outside the MS world as people might mutter “we all get a bit tired now and again” when you are trying to explain how exhausted you are. Also, weird symptoms like Vertigo, the MS hug and visual problems makes an entire stable of annoying things that you will have to try to explain to friends and family.

On social media I often see people with MS being told “But you look so well” and yes I have had that said to me as well. This is why it is so hard to raise awareness of MS. To really explain MS to the general public you would need almost a whole chapter of a book instead of a snappy one liner. Basically it is a condition both very hard to live with AND to explain to others!

Bringing it back to yesterday’s show, yes I agree fully that far from all people with MS could do something like Trishna, I know I wouldn’t. But let’s face it lots of people without MS wouldn’t either! She is one amazing woman, who is working very hard at managing her MS. But the thing to take from this is that we are all very different and wouldn’t it be fantastic if more people with MS could tell their stories, so the general public could understand how varied this condition really is?

What can we as people with MS do to raise awareness?

While we are waiting for the media to do so (well one can wish anyway) we can always just do our best to tell people about what MS means to ourselves, tell people on social media and in real life what living with MS really means, the good, the bad and the ugly. With MS awareness week coming up in the end of April why not make it a goal to teach some new people about MS, some friends some family. Ok it will not reach as many people as a show on the BBC but starting at the grass-roots is a good place to start. There are plenty of great resources on the MS Trust website that you can use for starting raising awareness.

• Facts and myths about MS
The different types of MS video
But sometimes the best way to start is just by telling people how it is for you! Just like Trishna is doing herself.

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