Nicole, 30, UK

Hi, I’m Nicole. I recently turned 30 and I have photo-sensitive epilepsy...my, my that sounds like a terrible opening line to an online dating profile, but I think it describes a large part of my identity.

Turning 30 was a huge deal for me, it was terrifying reaching this milestone and realizing you haven't completed even a tenth of what you had hoped to; what was even worse is that my plans for the future were completely unstable and I really had no idea where I was going - metaphorically, of course. One factor I had in my favor was that I had learned to deal with my epilepsy and acknowledging this had provided me with enough insight into my identity that I am more prepared for reality.

I was diagnosed with epilepsy when I was 8 years old. I don't remember much from those early years, but I do know epilepsy didn't affect me greatly - I just hated having to take medication each day. It was only when I hit puberty that the emotional aspect of having epilepsy began to take its toll and I began a downward spiral to a world of low self-esteem and a desperate need for acceptance.

I was an awkward teenager, in fact I am an awkward adult, and I hated that fact. I wanted to be popular and having epileptic seizures made me feel embarrassed, humiliated, ashamed, frustrated and highly anxious. I began hating myself because I couldn't understand why I didn't have control over the situation when I was taking all this medication and I withdrew from the world curling into this ball of self-pity. I moved from clique to clique in an attempt to 'fit in', but this only led to further isolation as I believed that everyone was only accepting me out of pity.

Eventually high school came to an end and I left for university. I remember feeling that this was an opportunity to create a new identity, make new friends and finally be accepted. The first thing I noticed about my fellow students is that they were all skinny and gorgeous, and I felt I needed to be skinny to be accepted so I stopped eating - remember I had very low self-esteem. I lived off water and minimal amounts of food, but I lost a great amount of weight and believed this was what I needed to be cool.

My twenties were filled with reckless behavior as I was willing to do anything to be accepted. Unlike my teenage years that were spent ruminating over having epilepsy, I now refused to think about or even acknowledge having epilepsy - strangely enough, I didn't mind if people know I was epileptic, I just passed it over and carried on with life. I found myself in dreadful situations drunk, partying until early hours of the morning, hanging out with unsavory characters. I remember having a tonic clonic seizure and then heading off to meet friends at a club because I felt a need to maintain this persona in order to be accepted, no matter how much physical damage I was doing to myself.

In November 2013 I had a weekend of seizures, which I don't actually remember but was told about. I remember the Thursday night and 'woke up' on Monday afternoon in hospital with a drip in my hand and a terrible headache - lucky no need for stitches this time. I was shown videos of the seizures and I decided I need to make some drastic changes in my life before I did severe harm to my body and brain. In previous years I had lost the ability to speak between seizures, I didn't want this to happen again and potentially become permanent.

Now I live a calmer life and am making allowances for my epilepsy. I no longer drink, I do not have a high-paced social life, I no longer work in stressful environments, and I am trying to sort out my diet and exercise (that's not going too well as I prefer junk food to vegetables). Epilepsy sucks, there's no doubt about it; but, if you accept it and learn to live in harmony with it you can lead a rather fulfilling life. I still have goals and aspirations and having epilepsy is not going to stop me from achieving them, but I'm not going to ignore the fact that I have epilepsy while doing so.

- June 21st, 2014

Contact info:

Email: nmendes84@gmail.com Blog: https://mylifeandepilepsy.wordpress.com/