Rediscovering a sense of purpose
Joanna tells us how reconnecting people after COVID has been a highlight of her time as a Group Coordinator. And how volunteering has helped her feel valuable and useful again.
I’m a singer and pianist with a passion for musical theatre. I studied at the Liverpool Institute for Performing Arts (LIPA).
In the summer of 2021, I was going through the process of diagnosis and really started to struggle with MS symptoms. I was searching online for sources of support and discovered I had a local MS Society group – Sheffield and Rotherham.
So I messaged them, but didn’t hear anything back. Then I emailed and left a voicemail message, but still nothing. It was a big deal for me to admit I needed help. And when nobody replied I felt scared and alone. I had my wonderfully supportive husband and family. But you need people who actually understand what you’re going through.
Accepting change
I was teaching drama at a local school and had just been appointed Head of Music when I was finally diagnosed with relapsing remitting MS.
It soon became clear I couldn’t keep teaching. Everything was falling apart. I just wasn’t stable enough and had cognitive issues. MS also affected my singing voice and my ability to play the piano. My fingers wouldn’t work and I couldn’t read the music properly. As a trained musician, this hit me particularly hard.
After months of sick notes, I resigned in 2022. It was awful, but it was the start of accepting the fact I have MS. I kept the hope that, one day, I might be able to look at working again. And my Occupational Therapist suggested volunteering would be a good place to start.
Stepping up
By now, I’d joined the MS Society. Out of the blue, I got an email saying that the Sheffield and Rotherham Group had become temporarily inactive. It also asked if anyone was interested in volunteering. Now I knew why my requests for help hadn’t been answered!
I’ve always tried to give back to the local community where I can. And this felt like an opportunity I couldn’t turn down. I didn’t want anyone to feel alone, as I'd done. As long as the MS Society understood I was newly diagnosed, with a young family, I needed to do this.
I filled in the forms, had my interview, and became the Group Coordinator!
Reconnecting my MS ‘family’
The group had run a weekly seated exercise class in Sheffield for over 20 years, which stopped during the pandemic. It was wonderful to ring around the exercise class members to introduce myself and let them know the class was back on.
Some of the members were crying down the phone saying they never thought they’d get that call. Some of them only go out a couple of times a week. And this is a really important part of their lives that was taken away by COVID.
We had a one-off event to bring the exercise class members back together at Christmas. You could see the pure joy they had from seeing each other again. And from being back in a room with people on the same journey. Some of them don’t use email or social media. So it was difficult to tell them people had passed away since the class last met. It made me realise how much of a family they are. And that the social side is just as important as the fitness benefits.
Now, 12 to 15 people attend the weekly session. I’m the youngest at 41 and the oldest is an incredible lady of 88. There’s such a range of personalities and I’ve fitted in really quickly.
I don’t think people realise how much they can achieve by giving a small amount of their time.
Looking ahead
The next thing is setting up a new version of the seated exercise class in Rotherham. And then starting some kind of coffee and chat event for people who can’t join the exercise groups.
There’s lots of music going on in this area, including a dementia choir. I’d love to set up an MS choir — singing and learning new music can bring so many physical and mental benefits. There’s still a lot to sort out, but I’m very excited. Launching a choir could lead to new opportunities for fundraising and increasing awareness of MS. And I’d really like to do some singing again myself.
Beyond that, I also want to organise a fundraising costume ball. I think it'd be really fun.
We’ve got so many plans, and the funds to put them into action. But a big challenge is the lack of volunteers. We just need a bit more help. We’ve got a couple of new people joining us soon, which'll be great. I don’t think people realise how much they can achieve by giving a small amount of their time.
Find out how to volunteer with us
Going at my own pace
I’ve always been the 'ideas girl', wanting to get things going. But family life can be exhausting, and my MS is unpredictable. So I have to listen to my body more now. The joy of this volunteer role is that I can do it at my own pace. If I’m having a bad week and not able to do anything for the group, it’s not a problem.
Everyone’s very supportive and insists I put myself first. From the world of work, I’m just not used to that. Knowing I can work around my MS takes away all the stress that can make my symptoms worse.
Just try it
Everybody’s got a cause close to their heart. So if you’re thinking about volunteering, just try it. If things change, you can step away again and there’s no judgement. And if you can give a little bit to somebody else, the rewards are massive.
Volunteering has given me back the sense of purpose I lost when I had to leave my career. It’s given me a community to be part of. It’s given me the opportunity to keep making a difference. And it’s made me understand MS at a greater depth. Volunteering allows me to contribute and feel valuable and useful, without having to hide my disabilities and needs.
Everyone talks about being kinder and helping others. This is exactly a way you can do it in however much time you can give.
