Wednesday 21 May 2014

Day 4: Show me the meaning of being lonely

When Cassidy Megan started Purple Day a number of years ago now, it wasn't a random colour chosen to signify the condition because nobody else had taken it, there was a message behind it.

Lavender grows in isolation normally and depressingly, many young people with epilepsy have to grow up in isolation too. Not because they don't have friends, but because it's almost impossible for people without epilepsy, to come close to understanding what the condition is like to experience.

It's hard to explain that you've got a short attention span, because your brain is so constantly disrupted all the time, or because your epilepsy affects a part of your brain that it uses for learning skills. It's almost impossible to explain certain types of epilepsy, like my own temporal lobe epilepsy, where the sense of non specific fear is so strong and potent, that you just can compare it to anything, even though you're awake, conscious and can still, with limited capability, talk as normal.

While the statistics show that it's not the case the other way around, there are also a large number of people with learning disabilities, that also have epilepsy. I can't even imagine how they must feel, not being able to communicate in the way they would like, amongst their peers, never mind having the epilepsy to deal with on top of that.

Sometimes you just have to concede that you're alone in your own head with your thoughts and you can't explain them.
Or do you?

In the 21st century, social media has developed as a such a fast rate, it's hard to keep up. And it has major benefits for finding people who also have epilepsy and being able to talk to them. Facebook is a brilliant example, where epilepsy support groups are open and full of conversation about experiences of epilepsy, the medication side effects and generally just confirmation for people, that actually, what they are going through is totally normal and is also happening to other people with epilepsy too.

Young Epilepsy, have for years now run a brilliant school for kids with severe epilepsy, meaning that they can be amongst their peers and get the best support possible, that doesn't patronise, but just helps in their educational and social development.

Epilepsy Action, who are the biggest member led epilepsy organisation in the country, have branches across large parts of the UK, but also run a number of events and even tea and coffee groups. I guess when peer pressure demands that you drink alcohol after a certain age, it's great knowing no one will judge you for having a cuppa instead of a beer.

Epilepsy Society, run the specialist epilepsy hospital in Chalfont St Peter, where it's impossible not to find people going through exactly the same experience as you I think. It's also where I met two of my best friends, Georgia and Susie while I was being re-tested to get my specific epilepsy diagnosis.

I guess your friends are going to be people you can relate to most and that are your peers. I should expect that finding people who are going to know exactly what you're going through yourself, makes for a lot of less isolated life.

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