I was diagnosed with epilepsy when I was 18. I was lucky to get control of my seizures, and I had good support around me from my family and a local Epilepsy Action group. But that all changed when I had to move to the other side of the country for work.
Suddenly I didn’t have that support. I was on my own far from home. The nearest group to my new place was over 50 miles away. Most people didn’t know how to act around me. They seemed very wary.
I’ve always been a positive person though. Growing up, a relative had really bad epilepsy. I always thought about her and knew there were people worse off than I was.
Knowing that, and wanting to do something about it, I decided to set up my own group. I contacted Epilepsy Action again and advertised a group meeting in the town where I live.
I had no idea if anyone would be interested. But when the day of the first meeting finally arrived, 12 people turned up! The group’s been going strong ever since – and it’s a good job.
Shortly after setting up the group, I got the news my mum had died. I was devastated. My seizures began to occur more often and spiral out of control. It made me anxious and I got scared of leaving the house again. The fear made the anxiety worse, the anxiety made the seizures worse. It’s a familiar story.
But now the group was there for me when times got bad. They knew what I was going through without me having to explain. It made such a difference.
Some people come to the group so they can talk about their epilepsy with others who understand. Some come for the company – because they’re scared to go out unless they know there’ll be others around who understand and know what to do.
Wouldn’t it be great if this Purple Day we could stand together and help even more people to find this support?
It’s only donations that make it possible for Epilepsy Action to keep setting up local support groups. And for those who really can’t get out, donations make sure the Epilepsy Action Helpline is there. Words of support from a friendly voice at the other end of the phone. The charity even has an online forum, so wherever people are they can find others who understand the challenges they’re facing.
So a donation from you today really will help. You can help someone isolated by their epilepsy to pick up the phone, to go online – or even to take those vital first few steps outside and find the support they need nearby.