Naomi, 28, Australia

I fell across this website yesterday, after YouTubing talks surrounding epilepsy and thought it is such a wonderful idea that I had to participate.

I was diagnosed with epilepsy when I was 16, at the time I didn't really understand what was going on, nor did I really want to. I was an adolescent and there were far more important things to manage (like boys, parties and the advent of alcohol and drugs). Unfortunately for me this was most definitely the wrong thing to focus on, but hindsight is a fine thing!

During this time I was seizing every few weeks, big tonic clonic seizures, that left me physically and mentally exhausted, confused and often injured. I rebelled. Unfortunately for me, the friends that I had were not as steadfast as one would hope when going through a trying period, as I became more of a persona to gossip about than a person who could be hurt. I began to disengage; if I could not understand what I was going through, how could I expect anyone else to?

School was horrific, I was continuously anxious, and would often have panic attacks. I didn't want anyone to be close to me, what happened if I had a seizure and wet myself? What would the girls think? Distance and isolation became my comfort.

I developed anorexia I think because it was the one thing I was able to control - everything else in my life felt completely beyond my command. I left school and continued on like this for a number of years, putting myself into a number of poor situations because of my drinking and late nights - but it was so much easier to do that than actually deal with myself and my condition. On the outside I was functioning as any normal 20 something year old would, but behind closed doors I was in crisis.

I had 2 years when my seizures significantly reduced, but then they increased again, staying fairly consistent. Most of my seizures are idiopathic (of unknown origins), but others are triggered by sleep deprivation and anxiety with fluorescent lights sometimes making me physically sick? ( who knows why?!). I recently dipped (as I now refer to it!), after my seizures increased to an almost daily occurrence - I was let go from my job (illegally I know, but it actually wasn't worth the battle) and I began 'wombating' (isolating myself) again. I get tired of trying to explain myself, or act in the way expected, and seizing at uni or on the way to work, is not only terrifying but mortifying - It shouldn't be so, but it is.

One of the most difficult things I have found about having epilepsy as a condition is the medications and people's perceptions. If you want your ill people to look ill (or shut up and stop complaining), there is a complete lack of awareness and cognition that an illness such as epilepsy can manifest itself in a diverse range of ways..... But after a while you just stop talking as no one believes or wants to know - 'you look alright, you're at work, what's the issue?'. And sadly it is this that has forced me to deal with my condition primarily on my own, the isolation just comes naturally after this. It is this that must stop - no one should feel like their condition is a encumbrance.

Epilepsy is scary for others to see and often understand (as it is for those dealing with the condition), its cause and effect can be multifactorial - and I feel that it is the diverse nature of seizing disorders that often hinders people's want for awareness and appropriate action for this prevalent and often misunderstood, and misrepresented condition.

I currently work at a recently established epilepsy foundation - The Click Foundation - with the hope that increased dialogue by those who experience(d) the condition (whether that be the person themselves or partners and family members) will allow an increased awareness, understanding and investment in epilepsy. It is my work with other epileptics that has had a hugely therapeutic effect upon me, increased my want to share and begin caring and looking after myself in a way that I had long disregarded. Strength, consistency and a positive attitude can be difficult to maintain sometimes - but none of us are alone, we just first have to reach out and assist one another and from here we can move to gain greater understanding and investment within our communities.

P.S. ....... I haven't had a seizure in over a week, and the medication I'm on now is keppra and lamictal - side effectwise is an absolute dream!

- June 11th, 2014

Contact info: nesherborne@gmail.com