Thursday May 30 2019 02:00 PM
This week Robert Joyce shares his thoughts on World MS Day and invisible symptoms
Every year we take one day, May 30, to tell the world about Multiple Sclerosis. This post is on ‘our’ blog where we share our experiences of MS and its impact on our lives.
I am the audience we write for and I know when I write ‘pins & needles’, your heads will nod. You have experienced this and many other symptoms, many of which are invisible.
This World MS Day we are going to share with the wider world what it is like to have invisible symptoms, and the impact they have on our lives.
In the last year there have been two projects showing how these (invisible symptoms) feel. In Ireland we had the MSunderstood Cafe starting as a pop up experience in Dublin and then it toured the country in a bus. When someone without this disease walked in and tried to move an impossible heavy chair or couldn’t focus on the blurry menu, they felt for a moment, this illness. The second project was the film ‘Hidden’ produced by Shift.MS. It followed a young woman on her journey through the day and you could see how difficult it is experiencing something you cannot share.
On this day our aim is to move these stories outside of our group to the wider community to share them with people who have no experience of MS. Experiences like the crushing fatigue that makes every movement leaden and difficult, to lost sensation in our fingers making the world feel like some coarse sandpaper, limbs refusing to move like they once did, pain manifesting in so many ways in so many places or L’Hermittes that causes an electric shock to run from your neck to your bottom just because you nodded your head!
The world will not know what it is like to live with MS unless we, the people in the MS community, tell them. On this day the spotlight will shine on us all over the world. If you are from Connemara, the USA or India, the message will be the same. We have invisible symptoms we cannot escape from and we cannot fix. MS is incurable. By sharing this message we will be pushing to get more understanding of our daily lives and to get more research to find solutions to our medical needs.
On the World MS Day website you will find events taking place all around Ireland and the world. We encourage you to take part in any way possible. It can be online through Twitter, Facebook or Instagram, or maybe at a coffee morning hosted by your local branch. Take part so the wider community, your local community, will understand a little bit of what it is like to live with Multiple Sclerosis.