Barbara’s story

I have had epilepsy for 65 years.

During my thirties and forties my seizures were very frequent and dominated my life.  As I got older, my epilepsy improved, so I wanted to help others by volunteering with an Epilepsy Action support group. I volunteer alongside two other people and we ensure the smooth running of the group. Meeting others living with epilepsy is a huge support for us all, both emotionally and for learning about the condition.

Living with epilepsy is extremely difficult for anyone, be they carers or those directly affected. I try to listen to what members would like from the group and plan meetings accordingly.  We find speakers on a wide range of topics, including memory, wellbeing, epilepsy research and medication.

During lockdown, our group met virtually, sometimes for a catch-up, other times to discuss specific things such as anxiety.  Our members tell us how vital the group is for support, and especially for meeting others living with epilepsy.

I’ve learned a lot, too. Over the years I have been to many conferences, where I have met many consultants, epilepsy nurses, and members from other epilepsy-related organisations. I have read a lot around the side effects of drugs on memory and mental health, employment law and benefits.

I don’t have all the answers, but listening to people’s concerns and pointing them in the right direction is often the best support anyone can give.

Epilepsy Action really values the work of volunteers and are extremely helpful and supportive.  We have meetups via Zoom, which are are a valuable way of meeting other group volunteers, no matter where we live.

Knowing that I’m making a difference to people’s lives is worth every minute I spend volunteering.