I was diagnosed with JME (juvenile myoclonic epilepsy) when I was 16, just as I was starting my A-levels.
I was having myoclonic seizures every morning and evening and the odd tonic-clonic, usually a couple of hours after getting up. I was most likely to have the seizures if I hadn’t had enough sleep or if I looked at flickering lights.
Being diagnosed at the age of 16 was a nightmare. I wanted to go out with my friends and have some freedom, but my parents became so over-protective. Mum would nag at me to stay home, so she could keep an eye on me. She insisted that I was in bed by ten o’clock every night. She also limited my access to Facebook. She thought (wrongly) that too much time looking at a computer would make me have more seizures.
At first, part of me didn’t mind staying home. The thought of having a tonic-clonic in front of other people filled me with dread. I’d have been so embarrassed.
But while my class mates were busy getting social lives – going to the cinema, hanging out in the park and getting boyfriends, I was stuck at home. At school, I couldn’t join in with the gossip about what everyone had been up to. My circle of friends was getting smaller.
I had really low self-esteem. I felt I had nothing in common with my peers and thought that no-one would ever find me interesting. How would I ever get a boyfriend?
The longer this went on, the more depressed I became, and the less effort I made to even try to fit in.
I found myself opening up to my epilepsy nurse about how I was feeling. She was brilliant!
She helped me to see that having epilepsy shouldn’t get in the way of me having fun and being a teenager. Having friends and developing interests is a really important part of growing up and having a healthy outlook on life.
She explained that it wasn’t unusual for parents to worry. I had to find ways to show mum how I could look after myself and make sure I was safe if I went out. Things like wearing my ID necklace and making sure that I was with someone who knew what to do if I had a seizure. I also kept my phone with me, so mum knew I’d phone her any time if I had a problem. All this was helpful for building my confidence as well.
I gradually started making small trips out – a trip to the local McDonalds with my best friend, spending time in the park after school….
I still feel quite shy when I’m with a big group, but I’ve definitely got more friends now than I did a year ago. I’m definitely much happier. I still worry about having a seizure when I’m out, but I trust my best friend to do the right thing if it happens.