Chloe was diagnosed with epilepsy when she was just 11 years old after falling backwards in the doorway of her living room into a tonic-clonic seizure.

She shares her experiences and the impact living with epilepsy has had on her life.

How did you feel when you were first diagnosed with epilepsy?

Obviously being 11, not the best time for a young girl, but I was very angry, very angry about it all.

Actually, don’t think I came to terms with my diagnosis until I was in my late 20s.

I sort of ignored it. So, it took a long time to get under control. Probably till I was about 17/18 before I got control of the epilepsy and then it would pop up every now and again.

I think the longest I’ve been without a seizure was five years. And then, I went to therapy because I lost two grandparents, sort of like four weeks apart and was really struggling at that time.

It wasn’t until I was going through therapy for that, that I realised I actually hadn’t dealt with it and had just been ignoring my diagnosis and had a lot of anger about it.

What sort type of seizures do you have and how does it affect you?

I have all of them. From what I’ve been told. So, tonic-clonics are very rare now.

Absences, my husband is pretty sure I have them still. But they’re short enough that I don’t notice them myself unless I’m in the middle of a conversation and just completely lose my train of thought.

My more common ones are focal impaired awareness seizures. I’ve got a particular set of which is where I drop to my knees three times and get up three times in a row, and that’s mixed with sort of not blurred vision, but like on an old movie screen where the picture flickers.

I know I’m doing them but can’t stop them. So, they’re the more common ones that I get.

What sort of challenges have you faced since being diagnosed with epilepsy?

School was rubbish. They just didn’t have a have a clue really.

I was in and out of hospital a lot because I’d get focal impaired awareness seizures, so I’d have to go into hospital to get Buccal Midazolam and be kept in until they controlled the seizures.

I had one teacher during my GCSE years that came to hospital, came to my home to help me with my studying and my work and I succeeded in that. But left high school with not many grades.

I’ve been working for a company for 11 years and had hundreds of managers in that time as that is what happens in a big company.

I’ve got PTSD from one manager because of how she treated me. That was very early on in my career at this place and then another manager who tried to get rid of me and then my union solicitors got involved and they backed off.

Now I’m really lucky that in the last five years, there’s been a big sort of shift in values and behaviours of this business.

So, I’ve not had any issues for some time and there’s a lot more focus on understanding everybody.

But yeah, it’s been a rough ride for sure.

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

Growing up, my mum was very overprotective, which I completely rebelled against. I started drinking when I was like 14/15, to rebel against it.

I can’t drive and probably will never be able to drive because they can’t 100% control my seizures.

So, that feels quite claustrophobic and I can feel quite trapped sometimes because obviously I live in Scotland but my rest of my family are in Wales and England and I can’t just get up and take the kids down for a visit.

Everything has to be available locally for me to walk to.

Obviously, I get a bus pass and that, but I’ve got anxiety as well, so it’s not always easy for me to jump on a bus and get where I need to go.

So yeah, it is more than seizures. A lot of the time, I can find myself really angry and say what have I done to deserve this?

On the flip side of that, I help really vulnerable people in my role, so it has given me a really good empathy and helps me support others.

But it can definitely affect my mental health.

What would you say to someone who has been recently diagnosed with epilepsy?

Get as much knowledge as you can and learn what epilepsy means to you, because it’s not the same for everyone.

It can be something that confuses people as well because obviously everyone just assumes it’s all about flashing lights.

Try not to be frightened and reach out for help, even if you think it’s a really small thing.

If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at dcoates@epilepsyscotland.org.uk or call 0141 427 4911.