Volunteering has shaped me as a person

I was diagnosed with MS in 2008 when I was 28 years old. After learning about my diagnosis, I attended a research event with my mum. It was there I met a member of staff from the MS Society who invited us to a focus group about the Asian MS Group.

It was with the Asian MS Group that my volunteering journey with the MS Society really began. When I was diagnosed, the neurologist basically said ‘you have MS’ and that was it. I was given no information, no support and no guidance. On top of that, there can be prejudice and stigma around chronic illness and disability within the Asian community. And so, little was known about MS. It was hard trying to explain the condition to family and friends. That’s what made me want to do something to change this.

Along with my mum, I’m now the longest standing Coordinating Team member of the Asian MS Group. My volunteering role with the MS Society has also expanded because there are so many ways to get involved! I’m a member of the Equality Diversity and Inclusion reference group, I’m a technology forum member, I’m part of the research network, I'm a Governance Board member for the MS Centres of Excellence, I’ve helped to coproduce the Leaders by Experience Programme, I’ve blogged. The opportunities are endless! But some of you may recognise me mostly as an MS Society Ambassador.

My journey to becoming an Ambassador

It was my work with Asian MS and Asian communities that led me to winning ‘Volunteer of the Year’ at the 2013 MS Society Awards. I was then invited to appear on The People’s Strictly Come Dancing for Comic Relief. I think this really elevated the profile of MS, as well as my own reach in terms of patient advocacy. When the MS Society launched the Ambassador Programme in 2015, I was so proud to be announced as one of the first five.

It’s an incredibly busy role but being able to contribute to what the organisation is doing by helping to raise its profile through media appearances, social media reach, promoting MS to my influential network, fundraising etc., is very rewarding. The partnership I have with the MS Society as an Ambassador means I not only get to promote what the MS Society is doing, but they help to promote what I’m doing too. Particularly within the Asian MS community.

Why raising MS within the Asian community is so important

I'm often asked why Asians need a specific MS group. Even amongst neurologists, it used to be thought that MS was a Caucasian condition and Asians didn't get it. This is obviously not true. So, raising awareness is really important because it's about educating, it's about dispelling myths, breaking down stigma, prejudice and stereotypes. Everyone should be able to access the support and services they need. Whether that’s general or culturally sensitive support and services.

And importantly, it's about facilitating conversations and connections. Just like with, for example, young people or mums with MS, there are specific challenges that are faced by people within the Asian community. If there's even one person who isn't getting support, who isn't accessing the services that they need, who's having a bad experience, that's one person too many. No one should have to face MS alone.

Over the years, I’ve done a lot to raise awareness of MS within the Asian community. From talks at local groups, to hosting webinars, contributing regularly to the BBC or Asian Network radio programmes and various debate shows. And obviously, Strictly Come Dancing!

Rising to the challenge

It was amazing to be given the opportunity to appear on the show to raise the profile of MS. And personally to have the opportunity to challenge myself because it was really tough! Working full time and having to manage symptoms of MS, such as fatigue, whilst also rehearsing for up to 20 hours or more a week wasn’t easy.

I was very conscious of making sure that people knew how difficult it was. Whilst I had to be careful about not giving too much away about the show, I used social media to share what the experience was really like. So I talked about my fatigue and how I tried to manage my MS day to day. Nonetheless it really was a dream come true and personally one of my biggest achievements to date.

Volunteering has shaped me as a person

In certain ways, I’m a completely different person. I'm actually very shy and could find it difficult to talk to people because I never knew what to say. But volunteering has helped me with that because I very quickly realised I had something I needed to say. Volunteering has given me the opportunity to be able to develop that confidence in a safe environment. I’ve had the opportunity to meet so many different people from different walks of life and build a really great support network.

I've been able to develop so many different skills. Whilst volunteering is about giving back, it's also what you gain from it. The MS Society has so many different volunteering opportunities! You can try lots of different things. It's a really flexible way of finding something you enjoy doing. And you get so much support from the MS Society along the way.