What MS Day means to me
World MS Day on 30 May brings the global MS community together to share stories, raise awareness and campaign with everyone affected by multiple sclerosis (MS).
In this blog, Tracey our State Support Coordination Manager shares her story of what World MS Day means to her.
I was diagnosed with MS nearly 29 years ago at the age of 25. Like most people, I knew nothing about MS at the time and thought my life was over. There were no treatments available and, of course, no cure. To say it was a very scary time would be a massive understatement.
Not only was it scary, but it was uncertain. Not knowing if I was ever going to walk again. Not knowing if I was ever going to be able to use my right arm again, or even be able to talk properly.
But just as hard to deal with was the fear of rejection or exclusion. I had an amazing, supportive family and my friends were wonderful but I felt embarrassed and was convinced that the people around me (myself included) would see me in a whole different way, as less worthy. Possibly not even wanting to have me in their lives anymore.
My colleagues at the time rallied around me and even had a representative from MS Australia come to the office to give a talk and answer any questions. Just knowing this was happening while I was in the hospital made me feel so much better, that maybe my life wouldn’t be so bad after all. It gave me hope that the connections I had with my workmates wouldn’t be diminished and that this could be the same with other people in my life. To this day, I doubt they realise how much this helped me.
Education and awareness are so important and World MS Day is a day that brings this disease to the attention of people right around the globe. It helps build awareness, understanding and acceptance from people so if they see me stumble, drop things occasionally or walk with a limp, all I have to do is say “I’ve got MS” and people get it because they have an idea of what MS is. This means I don’t have to feel embarrassed or less of a person anymore.
Through numerous awareness/fundraising events I have come into contact with many other ‘MSers’ and carers, and have made lots of new friends as a result. I like connecting with people to show that just because I can’t participate in Park-Runs or hike up a mountain, I still have a lot to offer, just like any other person, with or without a disability. Without people getting to know me, they might never come to understand that, so being connected is not only good for me, but for them as well.
Being part of the community and connected to people also helps raise awareness which in turn supports the research and development of new treatments and hopefully one day, a cure. So to me, and the thousands of others with MS, World MS Day is a very important event.
Read more about World MS Day on our previous blog.