We fight to improve the lives
of everyone affected by epilepsy

Erin

Erin was diagnosed with absence epilepsy at age 8 when her teachers noticed her friends tapping her head to ‘wake her up’ in lessons. At high school, she was regularly told off for not concentrating in lessons when she was actually having absence seizures.

“Growing up is difficult anyway, but with such a weight on my shoulders it made those few years even more confusing. I come from a very small place in the countryside so if I told anyone I had epilepsy, it would’ve spread like wildfire and people wouldn’t have (especially in early high school) such an open mind.

“My GCSEs came around quickly, and I was given extra time and put in my own room. Technically, great! But having to walk out by yourself to an empty room with just a clock ticking for three hours is actually more stressful. At that time, I still wanted to keep my condition secret.

“Competing in pageants in my early teens was amazing and helped me gain so much confidence. But just like with school, I hid my epilepsy from the pageant community. I assumed that everyone would treat me differently and it would stop me from winning and being successful. Surely having someone with epilepsy on stage with the bright lights is a recipe for disaster? After working so hard and thinking non-stop about winning Miss Junior Teen Great Britain I didn’t want anything to stop me, especially something I can’t control. I didn’t tell anyone. And I won.

“This all came to a very sudden end when I was watching another pageant. Wearing my sash and crown with pride, I sat front row. The show was being filmed, snapchatted, live streamed when I had a classic epileptic seizure. Everyone watching at home could see my mum run over to me, the host asking if anyone was a doctor and asking for everyone to leave and me being carted into an ambulance. I couldn’t escape it now, surely?

"February 2020 came along, I was fed up of hiding it any longer. Dodging questions and feeling ashamed. On that day I was finally proud about my epilepsy and wanted to act fast. I wrote a Facebook post with my story and the other side of epilepsy. I included a photo of when I knocked my tooth out, a Nanny McPhee kind of thing. That was the hardest thing for me as, a pageant queen with one front tooth and a bruised face don’t really go hand in hand. Posting a picture like that was scary.

"Thankfully the response was 100% positive. All of the pageant girls were supportive and a lot of people shared it. A weight was lifted off my shoulders. Finally, if I have a seizure in public there wouldn’t be any false rumours going around.

"Last year I was contacted by the BBC about a reality series called Heartbreak Holiday. It involved travelling around the Greek islands for 5 weeks. I was ecstatic obviously, the thought of being on TV was amazing and a dream come true. I thought, am I mentally ready for this? To go away for over 5 weeks by myself, in another country, being around all new people while still hiding my epilepsy?

"Just like the Miss Teen Great Britain final, it was just too good an opportunity to not take. I did it, I went abroad without my mum who is my support system, hiding my epilepsy. I made sure I ate, slept, drank water and always took my pills, I did everything in my control to keep my epilepsy at bay. Thankfully I was fine. It may seem like a small victory, but I am so proud of myself for it. It gave me the confidence that I can go away from home and that I can take control of my health.

"I haven’t met anyone else with epilepsy so I thought no one would understand. Obviously, I have my family and doctors to talk to, but it’s not the same really. I am now part of many Facebook support groups where I can connect with other people in the same situation. There are so many different types of epilepsy and it’s been so beneficial to me to broaden my horizons. It is so important to speak to other people for emotional support and to be able to relate to their experiences."

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Erin
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