Steven Connelly has lived with drug-resistant epilepsy since the age of four. After completing Epilepsy Futures, a self-management programme run by Epilepsy Connections which is designed to help people take back control of their lives, he decided to start volunteering.
After completing my time on Epilepsy Futures, it was suggested that I consider becoming a volunteer peer mentor on the project, supporting other people with epilepsy to turn their lives round.
I have a huge passion and enthusiasm for supporting people living with epilepsy and I strongly believe in the importance of delivering training for vulnerable groups, organisations and individuals regarding epilepsy and stigma. I want people to understand that although life with epilepsy can be really awful at times, it can get so much better with the right support and information.
Since starting to volunteer, my skills and confidence have really developed. As well as being a peer mentor, I have presented workshops and been a guest speaker at a whole range of events. Before I got involved with Epilepsy Connections I would never have thought I’d be able to do that.
As my confidence has grown I have become more involved across the organisation. I now help out at events for children and families and at Friends Connected, a monthly social group for adults. Recently I helped out our education and outreach worker, Colleen Wilson, at Glasgow Science Centre during their Curiosity Live event, where we got the chance to talk all things epilepsy with visiting school kids.
Not only that, but I am also a fully trained volunteer befriender now. I’m matched up with another man and we meet every fortnight to spend a few hours together. We’ll maybe just go for a coffee but we’ve made a couple of day trips to Edinburgh. The aim is to help people feel less isolated and more connected to their communities, and to feel more confident about going out and about, trying new things and using public transport, which can be a big worry for a lot of people who have seizures. I was surprised to find out it’s the UK’s only epilepsy-specific befriending scheme, and I think it’s fantastic.
I’ve also been involved in a project with epilepsy charities from Austria, Germany, the Netherlands and Malta. We’re working together on an EU-funded project to produce Epipicto, a pictorial guide to epilepsy for people with literacy issues or who have just arrived in Europe and don’t have the local language.
Volunteering with Epilepsy Connections is extremely rewarding. About 70% of the volunteers have epilepsy themselves and we are all really well looked after. The organisation takes the long-term development of its volunteers very seriously. They are always looking to offer additional training and development opportunities on top of the basic volunteer training.
Volunteering has been an extraordinary and inspiring experience. It has opened up new opportunities for me, given me new skills and allowed me to meet some really special people. I have made lifelong friendships within the epilepsy community that are so important to me. I would absolutely recommend volunteering to anyone.