Lyn shares how she felt when she was diagnosed with epilepsy and how Epilepsy Scotland’s Wellbeing Service helped her after a serious car accident.

Can you tell us a bit about how you got diagnosed with epilepsy and how did you feel when you were first diagnosed?

I don’t remember that far back because originally it was way back in about 1964/65 and I remember nothing after that.

I had two seizures when I fell pregnant with both children in 1971 and 1974 and then nothing whilst on full medication.

I didn’t have a seizure for about 40 years, and then I had a seizure at the wheel of the car and it just felt awful.

Thankfully, no one was killed but it was four of us in a car. I blanked out, apparently.

It was a focal awareness seizure not a tonic-clonic seizure. Since then, I have just been very wary. Some days I feel OK, some days, I just stay in my bed.

How did going through that sort of experience impact you afterwards?

It was a terrible five years after the accident because COVID came in the middle of it and it was just a mess. These were all good friends of mine. Some haven’t spoken to me since.

That affects me a little bit. People who I thought were friends were really just acquaintances.

What type of seizures do you have and how does that sort of impact you?

Focal awareness. I know something is wrong but can’t put my finger on it.

It takes me ages to do anything, and then I discover I haven’t eaten for the two days.

I have quite a good network of friends who now contact my daughter. If they phone me and find something is wrong, they can pick up on it.

I just don’t go out on those days. I’ve always had seizures in the house touch wood. I just hate it.

We always say that epilepsy is more than seizures. Do you feel this has been your experience?

Losing being able to drive has been the worst bit.

I mean originally way back in 1971, you had to go three years clear with no medication changes or anything before you got your licence back.

I got it back. Then fell pregnant. Lost it again. Then went three years again without a seizure and got my licence back.

When I had the car accident, I had no warning of having a seizure at the wheel. I mean that could have been so much worse.

People could have been killed. As it was, I had two broken legs, broken pelvis and a few other injuries.

But as my daughter says you are still here to annoy us.

How has Epilepsy Scotland’s Wellbeing Service helped you?

I don’t feel as scared to try to do things. It’s just having someone there who can listen to you and is there to listen if something goes wrong.

You can lift the phone and anyone in Epilepsy Scotland’s offices will help out.

How important do you feel awareness weeks such as Invisible Disabilities Week are to raise awareness of epilepsy?

I’ve been fighting for awareness disability for a long time. I’ve also got Ileostomy resulting in a stoma, which obviously is an invisible illness.

I have fought for so long for that I think it has got to be done and it’s got to be made more and more aware.

I mean Facebook and those things are good and I don’t know how else you can promote it, but everything that’s on there do share it and hopefully somebody else will share it on and people will read it and get some awareness from it.

What would you say to others who have been recently diagnosed with epilepsy?

Contact Epilepsy Scotland. They’re great and give you somebody to talk to who knows what you’re going through.

Talk to others because you’re not alone, you do think you are alone. You think you’re the only one.

It’s like a secret illness and nobody wants to talk about it, but it’s not. It can be talked about and it should be talked about.

My friends now talk about it and we discuss things about how I’m feeling and different things. It does need to be made more aware.

To find out more about Epilepsy Scotland’s Wellbeing service, please email wellbeing@epilepsyscotland.org.uk or call 0141 427 4911 or click here.