Finding purpose through volunteering with the MS Society
Treasa was diagnosed with MS in 2015 and began volunteering with us during the pandemic. She shares her experiences raising awareness, offering support and celebrating the MS community as a Social Media Volunteer.
I’m 49 years old and live in Belfast with my husband and our two children. Looking back, my MS story began long before my official diagnosis. My first symptoms were in 2006, but at the time I didn’t make the connection. Then in 2010, while pregnant with my first child, I had blurred vision for two weeks. Again, I pushed it aside. Like many people juggling family life, I didn’t have the time – or maybe the courage – to ask what it really meant.
It wasn’t until 2015 that I finally went to my GP. I’d developed searing pain down the right-hand side of my neck and shoulder, followed by facial numbness, bladder issues and numbness that ran from my toes to my hip. It was impossible to ignore. After a whirlwind of tests, I was formally diagnosed with MS in June 2015.
That November, I started treatment with Alemtuzumab (Lemtrada), repeated in 2016. I’m incredibly grateful that it seems to have put me into remission so far.
Learning to face MS with compassion
At the start, I wanted to carry on as if nothing had changed. I hoped if I kept my head down and carried on, I could outrun the fear. And I didn’t want to be a burden on anyone. I know now that this is something a lot of us with MS share – pushing through, putting others first, hiding our own needs. It’s part of what I call the ‘MS personality’. But over time, MS taught me that ignoring it doesn’t work. I needed to face it head on, and with kindness. For me, compassion has been key – compassion for my body, emotions and myself.
In those early days, social media was a refuge. It’s where I found other people’s stories, which reassured me that my life hadn’t ended with diagnosis. There was still hope, purpose and community. That sense of connection was vital for me, and it planted a seed: maybe one day I could give back by helping others feel less alone too.
My volunteering journey
My first volunteering role with the MS Society was in co-production during lockdown. We created a programme to reach people living with MS in Northern Ireland. It was powerful to be part of something that brought comfort and connection at such an uncertain moment.
Then I moved into a Digital Volunteer role, which was perfect, as I was working on a postgraduate qualification in digital marketing at the time. I could use my new skills to not only grow professionally but also support the MS community.
As a Social Media Volunteer, I help create and share content that raises awareness, offers support and celebrates our community.
I know first-hand how important it is to see yourself reflected in someone else’s story – to know you’re not alone.
The highs and challenges
I’ve had the opportunity to work with Naomi McBurney, Policy, Public Affairs and Campaigns Manager, on a roundtable event at Stormont. I shared my experiences of living and working with MS directly with government representatives. It was a powerful reminder of how important it is, especially in the current climate, to make sure our voices are heard so that the right government policies can be put in place.
This was a real highlight of my volunteering journey – being part of a conversation that could change things for people with MS in Northern Ireland.
There’re challenges too. Sometimes the stories I share stir up my emotions. But I’ve learned that being open – even when it’s difficult – is what makes this work authentic and worthwhile.
The impact you can make is bigger than you can imagine
Volunteering has transformed something difficult into something positive. It’s shown me that while MS is part of my story, it doesn’t define me. And it’s reminded me repeatedly that the most powerful thing we can do is share our stories with one another.
I give my time and energy, but I’ve gained so much in return. Volunteering has given me purpose, new skills, friendships and a sense of belonging. It’s reminded me that living with MS doesn’t have to mean shrinking your world – sometimes it means expanding it in unexpected ways.
Most of all, it’s deepened my compassion for myself, others and the many different ways people live with MS. I’ve met people who consciously live with purpose, support others and show me every day that we’re stronger together.
If you’re thinking about volunteering with the MS Society, I would say: do it. You don’t have to have all the answers or lots of free time. You just need a willingness to share a little of yourself. The impact you can make – and the impact it will have on you – is bigger than you can imagine.
