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.
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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.