We exist to improve the lives
of everyone affected by epilepsy

 

Beth

"I was at the gym a few weeks ago doing an early morning spin class with my manager from work. At some point during the workout I realised I had no idea of how I got to the gym and couldn't recall anything since waking up. I knew something was coming. Before I knew it, I was in the changing room with paramedics. I'd had a tonic clonic seizure. All I remembered was hearing someone shouting that I needed an Epipen and not being able to protest.

Having my manager there saved my life. She's as cool as a cucumber and was able to stop anyone trying to treat me with an Epipen – I cannot imagine how bad that could have been. She supported my head, got someone to call an ambulance, and even came to the hospital with me. Unfortunately, not everyone is this kind.

beth and friendsI've only been in my current job for 6 months but the first thing I did when I started was circulate an email to my colleagues to let them know what to do if I had a seizure. At first, I was embarrassed to share the information because I didn't want to be a liability. But I'm so glad I did and, after years of having to tell people about my epilepsy, I've become used to it. It's often a conversation starter because people are actually curious to know what it's like. Since sharing the information, I now have a clear area of the office that I can go to if I feel a seizure on the horizon.

I have a lot of focal seizures as well as tonic clonic seizures. It took a long time for even doctors to recognise what was going on, and it took a life-threatening experience before people paid attention. After this Epipen incident, I made an epilepsy awareness post online. It showed the dream state I go into when I'm having a seizure, and what it's like to lose my inner voice after a seizure. It went viral overnight – there were so many people commenting that they had no idea epilepsy was like this.

Seizures are such an unknown thing, and people fear the unknown. When you see someone pass out drunk or report sudden chest pain, generally people want to help and call an ambulance. It should be the same for epilepsy. I don't criticise society for this though, seizures and the aftereffects can be scary. I remember when my dad had a seizure at the gym before I'd been diagnosed, and I was genuinely scared of how alienated he was when he came home."

Beth
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