Life lessons - Living with Epilepsy

Disclaimer: This is a rather personal post, and is definitely not a cry for pity! Also, I must say that my epilepsy affects me far less than most people with the condition, and I realise for that I'm really lucky!

I was diagnosed with epilepsy around four or five years ago (I probably should remember!) and for a much younger me it was a far bigger deal than it is now; but these are just a few things I have found whilst exploring my teenage years with Epilepsy.

Coming to terms with the fact somethings 'wrong' with you.

I found this quite a challenge when I was first diagnosed, although now I realise how lucky I've been and have hindsight to see how it has not seriously affected my life, younger me, for a long while could not see beyond my diagnosis and a label which highlighted my imperfections, I felt damaged, and for a while believed that epilepsy was my identity; which I realise now it is not. This is a really tough thing to go through, which can make you feel isolated - I would just say don't be afraid to talk and reach out, it really helps, and to remember although it's part of you, it does not define you. 

The relative lack of understanding of the condition.

Through personal experience I have found that many people do not understand what the condition is, or the correct first aid/how to deal if someone has a seizure; which as a teenager with epilepsy is not the most comforting of things. Having said that, it has provided some funny stories; such as when whilst telling a Lifeguard at my local swimming pool that I have epilepsy, he asked me if I carried a EpiPen -|I really hope in the future if I do have a seizure that I am not stabbed with one of those... 

I have also found that although I disclose it on every medical form I have ever filled out, that often it is never passed on to the right people - it was only towards the end of my first year of sixth form that through me telling them myself my teachers found out, and shockingly my last week of sixth form that my form tutor realised - I am sure if I was far more affected by my epilepsy that they would have been informed (most likely by me personally!!) but this in my opinion negates the whole point of medical forms!

The jokes.

Although I don't find this offensive; the amount of times people, mostly harmlessly, use the phrase "it'll give me a fit" or a comment about flashing lights (which so many people think is the only trigger!!) is absurd. I used to get uncomfortable when people made these comments, and although making fun of people with epilepsy is definitely NOT OKAY, I have found the comments made out of a lack of understanding an opportunity to not only share the fact I do have epilepsy with those who may not know, but also gently educate them. 

DRIVING!!

In the UK, if you have been seizure free for 12 months you are allowed to apply for your license, this hugely affects so many people as people avoid coming off their drugs as one slip up can cost your license for an entire year, and some people are unable to ever drive. As I have been seizure free for four(ish) years I thought that applying for my drivers license would be relatively simple. Alas, I was wrong. Nobody warned me of the tediously slow process the DVLA take, and although I respect the need to be safe, their lack of organisation irritates me. The process of medical forms, medical examinations and just a lot lot lot of waiting is to say the least not the most efficient - and the wait for my provisional license has taken well over six months! I have found, although not personally, having to wait whilst many of your peers learn and pass their driving lessons is morally deflating!

These have just been some of my thoughts and feelings of growing up with epilepsy, I hope some of you will relate to this, and some will find it useful. I am only one individual with the condition and experiences vary HUGELY so I cannot say I speak for anyone than myself!

x

Links: https://www.epilepsysociety.org.uk/ I have found this website and charity really useful - if you sign up they send you information and useful things, and it is also a really good site for referencing things! 
https://www.epilepsy.org.uk/info/firstaid/what-to-do this is also a really easy guide to simple epilepsy first aid, although, every seizure is different and if you know someone who has epilepsy and are worried it's always a good idea to ask the person themselves!