My name’s Robin, I’m 25. I was diagnosed in 2005 when I was 17, nearly 18, just finished my A levels and just about to go to university. I spent about two years in denial, feeling ashamed and confused. I think I’d heard of epilepsy, but I didn’t know what it was. There’s a lot of stigma about it, I don’t know if there is anymore, but there was back then, particularly at my age – becoming an adult but you don’t particularly want to stand out from the crowd. My family were supportive which helped, and my friends were supportive, but it takes a lot of getting used to.
There’s also a sense of putting the pieces of the puzzle together, and you realise that certain aspects of your personality were down to the epilepsy, it’s quite overwhelming. I spent a lot of time thinking about how different I was from my family and my friends. I felt very passive in life, as if things were passing me by. And once I learned how seizures worked, both the seizures themselves and the after-effects of seizures, I came to see how a lot of these things could be correlated with the epilepsy. So initially that was scary, but over time it came to be quite relieving.
