I had a secret I kept from everyone

Matt and I have known each other for years; we are about the same age and worked for the same theatre company, so we spent most of our time outside school rehearsing together. We were in a situation that demanded we share some of the more personal sides of our lives.  Naturally we became quite close. Matt had seen me walk around the studio in my knickers, seen me buckle under pressure and cry uncontrollably, he’d even held my hair back when I got drunk one night and threw up.

But I had a secret that I kept hidden from everyone there, even Matt. I was so afraid people would get freaked out or not like me anymore.

See, I’m an epileptic. I’ve had epilepsy most of my life but it seems to come and go in stops and starts. When I was a child I had seizures all the time but they had slowed down through puberty. By the time I was 14 I thought they had stopped. I continued taking the medication anyway hoping epilepsy was a thing of the past. Mostly that was the case, and I could go months without having a seizure.  But over the next few years I’d get periods where I was stressed or upset and the epilepsy would rear its ugly head again.

I hadn’t had a seizure for nearly 7mths, so I didn’t think it was important to tell anyone about it when I joined this theatre group. And I decided this was one thing Matt didn’t need to know about me.

And then it happened. I was in the dressing room having a shower; I hadn’t been sleeping well, so was tired and rundown and thought a cold shower would wake me up. What a wake up call! - I had a tonic clonic seizure in the shower.

Matt heard it and when I didn’t answer he got someone to help break down the door. Everyone panicked and they called an ambulance. When I came round I was laying in the shower, naked with a blanket over me. Everyone was standing around with jaws hanging. An ambulance officer was sitting behind me, and another was trying to get everyone to leave the room.

I was sent home and was too scared to go back for days. Eventually Matt called, He was angry that I hadn’t told him or anyone, and hurt. And he was worried; he didn’t really know much about epilepsy.  I tried to explain to him what it was and what had happened but he just seemed to get more worried.

So I contacted an epilepsy advocate organisation and cried down the phone to the woman who answered. She agreed to meet with me and help. First she came to my house and we talked about my epilepsy and what had happened. She suggested that she could come to the studio with me and help explain what had happened and talk to people about what to do if it happened again. I felt much happier about having an ‘Expert’ with me.

The social educator started by showing a video about epilepsy. People got to ask questions about it and then we all talked about how to deal with it if I had another seizure. Having her there helped people deal with the issue without fear and broke down the myths. It ended with people feeling confident they knew how to handle it and that meant I felt comfortable too. She also explained that sometimes people are embarrassed about being epileptic and worried how people will react and that’s why they are to scared to talk about it. But that if people were informed about epilepsy, it should be an issue.

Matt looked over at me and winked. He understood.

So the next day I was back at rehearsals. I did end up having more seizures while I was there, but people weren’t scared anymore. I just wish I’d talked about it first instead of trying to hide it. In the end people still respected me and I was still the same person and still allowed to do the same things, and if I had a seizure people knew how to help me.