“Volunteering is what you make of it”

I was diagnosed with relapsing remitting MS at Christmas in 2014.  I began treatment shortly after, starting my first disease modifying therapy (DMT) in spring 2015. I’ve had two relapses in the ten years since my diagnosis but, because of these, I’ve re-learned how to walk and write three times.

I started using MS Society services about a year after my diagnosis. Until then I’d had so much contact with my local NHS team that I didn’t seek out further support.

Community engagement with Asian MS

Asian MS is the MS Society group supporting the Asian community. The group recently started an initiative with Regional Development Officers to do more outside South East England. I’m now part of a committee, working across North West England to improve engagement among local Asian communities. We aim to engage people living with MS and their family and friends.

The first event we attended was the Manchester Mela in 2024 – a weekend-long event. We took a roller banner, which included a QR code for people to scan for further information. And we had printed leaflets and resources on hand. It was interesting to see how many people stopped to scan the code and chat to us to find out about MS. A few people even became emotional because it was the first time they’d seen MS represented at an Asian event. We’re looking to attend the event again later this year!

Raising awareness in Asian communities

MS is particularly difficult to explain among Asian communities. There can be a language barrier and the term ‘multiple sclerosis’ doesn’t exist in a lot of Asian languages.

There are also no Asian role models with MS, so communities lack any social reference points.

I tend to explain MS with a metaphor — as the brain being a plug that isn’t wired correctly. Any neurological disease can be hard to explain in the Asian community. As we know, no two people living with MS have the same symptoms. It makes MS a grey area which can be scary to anyone who doesn’t understand it. I often hear people say, “I hope you get better,” and I have to tell them that MS doesn’t have a known cure.

What’s next for the new role?

It's great the MS Society created the role of Community Engagement Volunteer. It’s particularly useful for people who are living with MS and working, as we can now connect with them in their spare time. I’d love to use the community engagement initiative to unlock more of the community and engage more people.

We’re working with other medical and charity professionals in the Asian community to reach the people they support who are living with MS. We need to get people asking questions and routinely engaging to make a tangible difference. 

We know many members of the Asian community are living with MS — we just need to find the way to engage with them. 

Once more people know we exist, they can use us as a source of support for conversations and information.

A listening ear

I first called the MS Society Helpline when I had a question or was about to try a new treatment. I’m now proud to be a Helpline Volunteer myself, doing one three-hour shift a week. Knowing how much support I got from the MS Helpline, it’s rewarding to be able to offer the same service to others. I can empathise with their situation and people are thankful for a listening ear.

At times, someone might not even know what they want to discuss, but they can take their time and talk about whatever they like. It can be an emotional job, and the conversations can be difficult. But we get robust training and know how to spot and deal with safeguarding concerns.

Activities in Stockport and South East Manchester

We’ve got a lot going on at the moment in our group. We keep active by hosting swimming sessions and Pilates classes, and have access to a fully accessible gym. We have a monthly meetup at a local pub, where we occasionally have a guest speaker. 

We also have our annual Information Day. We invite expert speakers, such as therapists from the community neuro service and other local charities providing support to people. This is a very helpful event for our members.

We introduced a counselling service a couple of years ago across Greater Manchester which has been well received. This is for people living with MS or their carers. People can self-refer or be signposted through their GP or MS nurse.

We’re getting the word out there with other local charities too, so we can be a point of reference for any encounters they have with MS. As our group covers such a wide area, we need to spread the word as much as possible.

I’ve had to change how I do things, but I can still do them

I’m very glad that I started volunteering. Reaching people through my roles is making real, meaningful changes to their lives. 

Volunteering has also made me more comfortable talking about my own MS. I’ve realised that, although I’ve had to change the way I do some things, I can still do them. It’s not the end. I still work and travel. I’ve even been to Sri Lanka to release turtles!

Volunteering is what you make of it. It can be tough, especially when dealing with chronic symptoms. Within my volunteering teams, we divide responsibilities and work as a community to support each other. There’s no pressure to do any more than you’re comfortable with. For some roles, you don’t even have to leave your own home! 

This is a community that none of us chose to be in. But there are plenty of different things you can do to make it your own.