I was officially diagnosed with MS on World MS Day and I’m slightly ashamed to admit that I didn’t know the significance of that particular date at the time. Although I knew the diagnosis was coming and I thought I was prepared for it, nothing could have prepared me for sitting in a doctor’s office hearing those words and wanting to be anywhere else but there. Many years later I can appreciate the irony of being diagnosed with MS on World MS Day and I’ve decided to reflect on what this annual event really means to me.
World MS Day is officially marked on May 30th and aims to raise awareness surrounding MS and to connect the estimated 2.8 million people living with the condition worldwide. In 2009, the MS International Federation held their inaugural event for World MS Day. Since then the annual event has only grown bigger in scope and impact each year. Through events lasting for the duration of the month of May, World MS Day aims to create lasting connections, increase awareness and affect change in the lives of those living with this condition. Although the theme of this event changes each year, the core message remains the same: to campaign with and for those affected by MS in order to create lasting changing and strong communities. The theme for World MS Day 2020-2022 is ‘connections’. This theme encompasses self-connection, community connection and connections to good quality care. The theme aims to challenge social stigma surrounding MS, build supportive communities, lobby decision makers and connect people living with MS to MS research projects.
I must admit that at first World MS Day wasn’t something that I celebrated. I put it into the same category as the anniversary of my diagnosis, not a day worth acknowledging because I wasn’t at a place of acceptance.
As the years passed, bringing acceptance and self-compassion, I realised that it was certainly a day worth marking in a personal way. It’s about celebrating how far you’ve come with this diagnosis and what opportunities lay ahead. It’s a day to acknowledge the people in your life with and without MS who have supported you on this journey. It’s a day to revaluate and set goals for next year ahead in terms of advocacy work and raising awareness about this condition.
I’ve spent World MS Day with a friend who has MS in the latest Asian restaurant sampling dim sum. Other years I’ve spent the day at a gig with a friend who doesn’t have MS but has supported me endlessly. Some years I’ve organised fundraisers or bake sales to raise awareness and much needed funds for charity. Regardless of how you intend to spend it or whatever the theme of a given year, one thing remains universal and that’s the necessity for celebration.
It’s not just a day about increasing education and raising awareness, it’s a day worth celebrating you as an individual with MS within a community of people who care and understand.