The young people in the group really do inspire me
Siobhan tells us about leading an open discussion space for young people with MS. And shares her thoughts on the importance of health and wellbeing.
It was during lockdown that I became an MS Society volunteer. I see it as one of those strange positives to come out of the pandemic.
Before 2020, the MS Society in Northern Ireland had been running in-person café meet-ups for young people living with MS. But the project funding for this was focused on the Belfast area, whereas I live in Omagh. So, there would never have been a café here, and I would never have volunteered.
But then lockdown hit and keeping people connected became even more important. The cafés moved online and geography was no longer an issue.
I saw an advert on social media saying they were looking for volunteers. I thought it would be nice to spare some time and give something back. I don’t have a personal connection with MS, but this opportunity just came along at the right time. So I completed an application form, had an interview and sat in on my first café in September 2020.
Creating a safe space
The Young Person Online Café is simply an opportunity to bring a cuppa and connect with others who understand what it’s like to be a young person with MS. It’s all about friendship and peer support.
In my volunteer role, I’m there as a leader — to keep things flowing and make sure everyone feels comfortable. The chat is very much led by the young people, who are in their 20s and 30s. Most of them are regulars and there’s a really good dynamic.
The conversation can go anywhere, from TV shows to travel to being a parent. But when it does turn to MS, they can share their experiences of symptoms or consultants or medications. Of what’s worked for them and what hasn’t. They’re very open and willing to help others who are perhaps at a different stage in their MS journey, which is lovely to see.
Learning just to listen
Someone can turn up after a really hard day and just want to vent. So, we listen. It’s that sort of a safe space, with no judgement. People feel able to open up about some really personal stuff. Sometimes they just want somebody to listen without giving any advice at all. And it’s been a learning journey for me not to jump in and suggest something. It's about sitting back and letting them talk it out. They need time to come to their own conclusions.
One thing I do promote when I can is the importance of self-care. In the last few years, I’ve been looking into the simple things you can do to look after your own mental and physical health. I think sleep, hydration and movement are the three best things for our overall wellbeing. If we don't look after ourselves and take ownership of ourselves, nobody else is going to do it.
Heeding my own advice
I like to look after myself and I like my sleep. When you get a good night’s sleep, you can take on whatever the day throws at you. So, I go to bed early, get up early and go to the gym or for long walk before I start work. That’s what works for me, but of course everyone’s different. Including movement in your day can be as simple as dancing around the kitchen to your favourite song!
Since the pandemic, I’ve been working from home a lot. And I find that, if I sit on my own on the computer all day, I’m not a nice person in the afternoon. But it’s in my power to go out for a walk in my lunch hour, even just for 20 minutes — so that’s what I do. Rain, hail, or whatever. I need to have a break from my desk. It clears my head, and I’m more efficient and effective when I get back. My colleagues know that I protect my lunch hour from meetings. Setting boundaries is another important part of wellbeing.
You have to push through
If you’re thinking of volunteering, just do it. It’s very, very worthwhile and you definitely won’t regret it. And it’s when you step outside your comfort zone that personal growth begins. You have to push through. I was nervous at the start. But after the first couple of cafés I started looking forward to them. I settled in and they became a normal part of my routine.
The young people in the group really do inspire me. The passion they have for their jobs, and how they get on with their daily lives while managing their MS, is remarkable. So I feel privileged to have made connections with them as a volunteer.
Now, the project funding has run out. And the return to normal life means the cafés aren’t the social lifeline they used to be. But they’re still happening — just less often. We’ve created a friendship group and I’m proud of that. I’m hoping to make a trip to Belfast soon to finally meet some of the young people in person. Maybe at a real café for a coffee!
