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!

d2226ee829201166bb529dc7b8283734

Advertisements

Explaining Epilepsy

Ok we’ve all experienced this, having to tell someone either that you have epilepsy or what epilepsy is…or both, and it can be difficult sometimes especially depending on the person or setting. The first few times I can remember wondering how I was going to explain the topic of epilepsy to another person.

I try and think of the quote from Albert Einstein, ‘If you can’t explain it to a six year old, you don’t understand it yourself.’

The following, is very similar to what I tell people who want to know more about epilepsy without it becoming too technical, I find it works well as people can relate to it easily:

Epilepsy can affect ANYONE. (Sorry to scare you, but it’s a fact.) Anyone can have a seizure if they are tired enough, if their temperature is too high or if their have had a brain injury. The average person has a strong seizure threshold meaning that they have to become very unwell to suffer a seizure, but a person with epilepsy has a weaker seizure threshold which results in them having seizure much more easily.

Yes, I have said this a few times and it has worked, people do seem to be able to relate to it I guess.

I know sometimes you feel like your on your own, explaining something over and over again to people about something which is quite unusual, and pretty complex. Thats why I went for my angle, it makes it appear less scary.

Sometimes I have tried to be more, well, matter of fact with, ‘We all have electrical activity in our brains, well epilepsy is a surge of that electrical activity…’ and they’ve already glazed over. But perhaps its just the people I know.

I am really interested to know what angles you take, if you choose to take them.
Save

Why am I here?

No, don’t worry I’m not getting that deep. I just feel that I should explain exactly what drove me to start a blog on epilepsy.

I have lived with epilepsy for over 10 years and I am utterly grateful to say that for the past few years it has now become controlled.

You now might be wondering, so why are you are you now writing a blog? But after I had controlled epilepsy I honestly thought that the struggles with telling people about it would be over, but they’re not. Only a few months ago, I left a job due to the fact that I knew my colleagues were unable to accept it professionally even though I insisted there was nothing to worry about. Many of my friends and family thought I was insane for leaving, but I feel that life is too short to be in a job you’re not happy with.

Naturally everyone’s experiences with having to explain their epilepsy to other people will be different. Personally, I have found that about 90% of the time I have received responses that I would have rather not had. For a long time I tried not to dwell on it thinking that there wasn’t anything that I could do to change people’s attitudes or feelings. But then I realised that other people’s reactions would change if they were simply more education about epilepsy.

Also, for a huge amount of time, I never knew anyone with epilepsy. I never had anyone to talk to about it, to share my experiences, my fears or my thoughts. For many years I only knew of ‘a guy who knows a guy’ with it and the odd person who had one seizure, which wasn’t exactly helpful. A few years back I was working with a girl who had epilepsy, I approached her one day and I brought up the topic about myself having epilepsy, she looked so relieved to perhaps not be alone, and we spoke for ages on the subject. I then realised that although I might have controlled epilepsy I am still helpful, and I would like to help anyone who needs it.

Welcome to Ardent Journeys

I decided to name my blog Ardent 0b458d6722087dab698677362d850f0aJourneys because I feel that life with epilepsy is a life full of journeys. Having epilepsy myself, I have discovered it has had a huge impact in making me the person I am today. I look after my health, have empathy for other people’s health and wellbeing, and appreciate all the support that I have ever received.

However, don’t want to have epilepsy viewed as a negative aspect of life that holds people back, stops them from achieving their dreams, and I don’t want people to be afraid to have to tell anyone that they have epilepsy for fear of that person’s judgement or reaction.

I hope that not only will I be able to post positive stories about my journey through epilepsy, but I also want to raise awareness and educate other people about epilepsy.