Accepting Epilepsy – My Story

I was diagnosed with epilepsy when I was 14 years old. How did this affect me?

Initially I thought that I had coped immensely well and that the new diagnosis in my life had no impact on me. I was adamant that I was going to maintain a normal life as much as I could and not let epilepsy stop me from doing things I loved. Any outsider would have thought I was managing extremely well.

But when I looked back at my thoughts and feelings at this time and compared them to how I feel about my epilepsy today. I realised that I had some problems:

I found it hard to come to terms that I actually had epilepsy.

I know this sounds bizarre, but someone only told me that I’d had seizures and epilepsy. I didn’t witness these attacks, I just had to take their word for it. Yes, I felt unwell before and after the events and the doctors gave me brain scans etc. But you don’t witness epilepsy like perhaps someone with asthma.

I never doubted that I had epilepsy, but for a long time after I couldn’t even imagine myself having an unconscious seizure.  I can remember being in hospital once, and I tried to picture what it must have been like. Thinking (my teenage self) I hope I wasn’t embarrassing (not much you can do about that is there!). Then I thought of my parents, and how worried they must have been. But still, did this really happen…to me?

I didn’t want to hear about/see epilepsy in the media:

For a long time if I ever came across epilepsy on TV, films or news it always showed epilepsy in a negative light. It always seemed to be telling a story of a person with epilepsy who ‘died’, and it really frightening me. I know that there are dangers with epilepsy just like there are with most things in life, but to be constantly bombarded with the notion that epilepsy means death was very upsetting for a young teenager. So much so, that I isolated myself from anything online or on TV that mentioned epilepsy for quite a while. As I got older I realised that the sad stories are broadcast because they are very rare, if they happened all the time, it wouldn’t be news.

I saw a documentary called ‘Epilepsy and Me’ which I believe was on the BBC; I was very hesitant to watch it as I was afraid of becoming upset. I found the whole documentary really interesting and it educated others on the different aspects of epilepsy and how people live with it. Yes I found it a little upsetting to have to watch others suffering seizures but I think it also helped me accept my own epilepsy a lot more as I didn’t feel so alone.

I didn’t want to talk about my epilepsy:

I wouldn’t tell people I had epilepsy. I am confident that there are friends I went to school, college and uni with who probably never knew that I had epilepsy. Mostly people discovered about my epilepsy at pubs of all places, when they couldn’t understand why I was ordering a soft drink, and would ask if I was driving. I’d say that I didn’t drive. Then they HAD to know what was going on! So as you can guess, most dates deciphered that I had epilepsy within 10mins. What a mood killer.

I would also dread someone asking after my health. Close friends or family members would frequently enquire ‘how’ve you been recently? You know…Any troubles?’  For some reason it made me feel sick. As a teenager I wanted to put epilepsy to the back of my mind, and when people kept asking me about it, it reminded me of it too much, it depressed me and reminded me that this ‘thing’ could be making an appearance into my life again any day soon.

 

When you look over these three things it’s pretty obvious that deep down I wasn’t comfortable with my epilepsy. Epilepsy is a peculiar and difficult condition to come to terms with, so I can completely empathise with anyone else who has had a similar experience.

For such a long time I thought that I had no problem with my epilepsy until I realised that for years I had basically been trying to ignore it. Hoping it wasn’t going to pounce into my day and spoil it, whether that was the seizure itself or even just reading about it in the news! But as I got older I realised that my epilepsy is not an awful case, I still maintain a huge amount of independence and as things go I am extremely fortunate. I’ve learnt to embrace my epilepsy; I’ve learnt to accept it. It’s going to be a part of me for a very long time. It’s an extra thing that makes me a little more unique, and we are all amazing and unique!

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