Lisha’s Story

“My name’s Lisha and I’m 19 years old and I’m living with epilepsy. I was diagnosed about six and a half years ago, completely out of the blue, and it derailed my life because epilepsy is one of those conditions that people have heard of.

“They think, ooh, flashing lights, but there’s a lot more to epilepsy than that. And there’s a lot to learn. And it’s quite a scary condition to have because it’s not just the seizures, it’s also the anxiety you get from it, the being worried about going outside or being on your own, worried about going to sleep in case you have a seizure in your sleep. You know, there’s so much more to epilepsy than meets the eye.

“I struggled quite a lot and I still do with anxiety and other issues, but I managed to make epilepsy work for me in a number of different ways. Originally, I went to university and was studying marketing, but after a few months, I realised it wasn’t working for me and that on top of the anxiety of living on my own in a bedroom for how many hours a day made me feel like I’m going to go with my gut, I’m going to leave.

“But to my amazing luck, I actually managed to get a job working remotely, which means I could work from home and live with my parents so I was safe. So I work in social media now and I like to make social media posts and do videos and that sort of stuff.

“It was doing all that that opened my eyes more to epilepsy because I started following people who have epilepsy, reading up about it more discovering charities such as Epilepsy Action.

“And that just inspired me more and that’s kind of why I’m here right now, volunteering for Epilepsy Action because I have the time to do it, so I want to do it.

“I want to volunteer and I want to give back to my community because I guess epilepsy is one of those, it is an invisible disability unless you see somebody having the seizure.

“There needs to be more awareness and education on it, so people know what it is. So they’re not scared when they see someone have a seizure and think they’re dying. So they actually know what to do to protect that person.

“And I just feel like as a young person I have the power to do that more. I’ve been trying more on my social media to post TikToks and Instagram to share posts about epilepsy and encourage friends and family to read up on it more.

“Because there’s so many people that have epilepsy that don’t know others with epilepsy.

“I don’t know what the statistic is but it’s actually quite a lot. You know, you don’t really know anyone who’s got it.

“They haven’t got a big badge on their head, saying I have epilepsy.

“So it’s kind of making more awareness and destigmatizing it and realizing that epilepsy is a disability but it’s also like it doesn’t have to kind of define you in a way and you shouldn’t have to let it take over your life.

“I’m quite lucky though that I have medication that works for me. But that doesn’t make me ignorant to the amount of people who still haven’t found the right medication for them or the treatment and still struggle with it.

“And I just believe more awareness about the condition, talking about it more is the right step to go to encourage more research, help people, help people with their mental health and you know just kind of improve lives of those in epilepsy.

“So as epilepsy does impact many people’s mental health, it has also impacted mine and I found a number of ways to try and help tackle it in a way. One was education.

“Now as I’ve said, epilepsy is scary. You know, you just hear seizure, scary, unconscious. It’s not great. But if you read up on it more and you understand what is actually going on in the brain and you kind of just learn all the journal stuff about it, it becomes less.

“It’s not this big, I don’t know, mystical thing. It’s just medical. That’s what it is. That has definitely helped my anxiety.

“And that is one of the big reasons I am now a volunteer at Epilepsy Action because I’m now well enough in myself to be able to support others who may not be and honestly three years ago I would have loved to have been the person receiving support through the Befriending Scheme from Epilepsy Action.

“And whilst I can’t go back in time, what I can do is do now what I would have liked when I was younger, support other people and help them get through it. I cannot stress enough just how amazing it is being a befriender for Epilepsy Action.

“You get to learn so much about different people from all walks of life who are living with epilepsy. And yes, you’re helping them but you’re also learning yourself.
“And honestly, I just can’t stress it. It’s such an amazing feeling when you finish a session each day knowing, wow, I’ve really helped a person.

“So if you’re considering doing it, just do it. You’ve got nothing to lose. Do it. I promise you won’t regret it. I cannot stress enough just how amazing it is being a befriender for Epilepsy Action.

“It’s an experience you’re not going to get anywhere else. You get to speak to so many people and learn from people of all walks of life who are living with epilepsy and support them.”

Epilepsy Action has been inundated with requests for befrienders from people struggling with their epilepsy.

Being a Befriender, like Lisha, is a medium term commitment, with an even longer lasting impact. We hope to help as many people, like Holly, as possible who are in need of answers, which is why, if you can we would love you to support a few befriendees as the service continues to grow.

These half hour calls can make all the difference in a person’s life, no one should have to face epilepsy alone. You can find out more about the Befriending service and other volunteering roles on the Epilepsy Action website.