I started volunteering at the beginning of 2021, when the previous Talk & Support group volunteer moved away. The meetings were being held virtually at the time, because of the pandemic, and someone needed to take over hosting. I was desperate for the group to keep going because I needed the support, so I offered.
I have had juvenile myoclonic epilepsy and photosensitive epilepsy since I was nine years old and experienced a host of different types of seizures. Through attending a Talk & Support group I discovered a welcoming place which provided support and the opportunity to connect to other people living with epilepsy. For the first time in my life, I was surrounded by people with epilepsy. I wasn’t the only person I knew with it anymore. I’m so glad I kept attending, as now some of my best friends are people that I’ve met at the group.
The group means everything to me, as it has been such a life changer and it’s given me a lot of much-needed support. It makes me feel happy and confident and has taught me to be positive and to speak up for myself when I need to. My knowledge and understanding of my own epilepsy, and epilepsy in general, has improved.
The Talk & Support group volunteer role is quite varied, and it’s been an interesting and challenging couple of years for me, as the groups now are very different to how they used to be before the pandemic. Our group in Truro is slowly getting back to where it was, and we are seeing the number of people attending creeping up, which is really encouraging.
At face-to-face meetings we try to address any issues that a group member might have and are lucky in Truro to have our local epilepsy specialist nurse at every meeting. We also try to have something fun planned for each meeting, whether that be a speaker, a quiz or cake decorating. We tend to do the ‘activity’ in the first half of the meeting, as the second half is for mingling, tea, and homemade cake.
I also run a virtual group which covers the whole of the Southwest so it’s not always the same people attending. My responsibilities here include checking people in on Eventbrite, welcoming everyone, allowing people to talk and ask questions etc. If someone has a question that can’t be answered in the meeting, I can signpost them to the website or other appropriate services offered by Epilepsy Action. It’s been nice to meet different people and share our stories and experiences.
There is a bit of ‘behind the scenes’ work as well, for example, ensuring that the venue is still appropriate for the meetings, doing the risk assessment for it, and making sure that the booking is up to date. After each face to face and virtual meeting, I fill in and submit my meeting evaluation which records attendance figures, topics discussed, and any issues.
I enjoy every aspect of my role, and we always have a lot of fun at the meetings. I’m always learning new things, meeting new people, and I’ve also been able to get involved with a few projects in the charity recently, including a video to promote the Talk & Support groups. I’m hoping to do more things like this in the future, as it was such a fantastic experience! I’m also looking forward to more fundraising and awareness events.
I love being a group leader. It’s been great to realise that I have the confidence to lead the group, I’ve surprised myself. It has its challenges, but there are outweighed by all the positives. It gives me a real sense of self-worth, because I know from my own experience how vital these groups are, and volunteering to run a group means I’m doing something I believe in 100%. I’m still getting the support myself from attending, but I’m also I’m helping to run it! The best part is seeing what the group means to each person who attends. It’s great to see people open up and feel like they are in a safe place with no judgements.
I would recommend volunteering because I’ve learnt a lot about myself, developed some new skills and made some good friends through doing it. I think that if you like people, have patience, and want to support people with epilepsy, becoming a Talk & Support volunteer is worth considering.
You will never be left completely on your own and you will have as much support as you need from Epilepsy Action. There are monthly volunteer meetings over zoom to virtually meet other group volunteers from around the country. You need to commit to putting a bit of time and effort into the role, but it’s well worth it when you see how much the group members benefit from the meetings. There is always something new to learn, whether that be through training for your role, or simply talking to someone who comes to a meeting. It never gets boring!