Stigma

Before I had my first seizure I had no idea what epilepsy was, so clearly I had no reason to be embarassed or ashamed of it. However, over the next few months my mind shifted until sadly that was the place I was in. I have a few vivid memories from this time that perhaps help explain why this happened. The first was on the bus on the way home from having my EEG investigation. The department at the children's hospital had given me a sticker saying, "I had an EEG today!" I distinctly recall my Mum taking this sticker from me and saying, "I don't think everyone needs to know you had that done". Looking back I probably read way too much into this but it made me think that I should be ashamed of what was happening to me.

Even though I had had only 1 seizure my parents got me a Medic Alert bracelet that said "EPILEPSY". In my last year of primary school one of my friends asked me what the bracelet was for and I couldn't tell him, instead I just ran away crying. When my teacher asked me what was wrong I just said "I didn't want everyone to know".

All this would've been around 1995, so (I like to think) not that long ago. As an adult I have learnt to be open about my epilepsy and can talk about it quite comfortably. No-one has ever given a negative reaction when I have told them my diagnosis. However, many people seem surprised or taken aback and I guess this is probably due to a few things. One is that I talk about it so openly and the other is that people do not understand the condition and so do not really know how to respond when you tell them. Most of the time it does lead into a conversation about someone else they know with epilepsy. So, the question is, if everyone knows someone with the condition, why are people so uncomfortable talking about it???????