Just over 11 years ago, I had my first epileptic seizure at a friend’s 14th birthday party. We had all been doing karaoke in her front room when I fell to the ground mid-song and began to convulse. When my head first began to fall backwards, some of my friends had thought that I was jokingly singing a high note, but when I kept on falling they realised that something was wrong. My first seizure was unique in that unlike any other that I have had since, I was semi-aware of what was going on around me. Although I had no control of my body and could not see anything, I could hear my friends screaming. Unsurprisingly, this was quite a jarring experience for everyone. After having a second seizure a few months later, I was diagnosed with epilepsy.
Although I initially felt embarrassed, my friends presence during my first seizure was something that I would later be grateful for. I know through talking to other epileptics that trying to explain the condition can be very difficult, as epilepsy and all that comes with can be very challenging to convey to someone with no experience of it. It is an invisible disability, making it easy for others to forget (and impossible for strangers to know) that you have it. Because of this, the condition is one that you must try and learn to talk about not just for safety reasons, but in order to emotionally come to terms with the part that it plays in your life. As personal experiences with it vary so greatly, there is no neat definition that applies to all. I am however going to try and describe my own experience with epilepsy here.
Since my first seizure, I have had over seventy. This is due mainly to the fact that I have not yet found a drug that has fully controlled my condition. Often, I have found that the various medications are more tiring that the epilepsy itself. As my epilepsy remains uncontrolled, I have been prescribed many different types since being diagnosed – unfortunately the subjectivity present within epilepsy means that treatment for the condition largely relies on trial and error. Changing from one medication to another can take several months and during these adjustment periods side effects can feel much more pronounced. As I am writing this, I am on three different anti-epileptic drugs (AEDs) with one decreasing in dosage and another going up. The process is exhausting, however it is essential to retain hope.
I have had partial seizures before but the vast majority of mine have been tonic-clonic (formerly known as grand mal), meaning that losing complete consciousness and falling is an inevitability. Though the fits themselves can be very alarming for those around me, I am obviously never present to witness them- to me the fall has always been the most dangerous aspect of my epilepsy. Falling whilst conscious can be hazardous enough but when you are unconscious, you cannot feel pain so you could (for example) fall onto broken glass and not realise you were injured until regaining full consciousness. Whilst some people do get a warning before they have a seizure, I rarely do so I have to be mindful around water, fire, roads, stairs and anything else that could hurt me if I came into contact with it during a seizure.
There is a fine line between mindfulness and anxiety, and sometimes my mind can unwittingly venture into the latter. After my diagnosis, I found that ‘what if…? ’ were two words that became increasingly prominent in my thoughts. What if I have a fit in the road? What if I have a fit in the bath? What if I have a fit when I’m alone? These are of course all valid questions, but allowing them to dictate every aspect of my life would prevent me from doing almost anything! There are certain things such as driving that I accepted would not be safe for me to do a long time ago, but I believe that imposing excessive restrictions on myself due to my condition would have caused me a lot of unhappiness over the years. This is a subjective viewpoint- not everyone with epilepsy has the luxury of this kind of freedom. As I stated at the beginning this is only my experience of it, nothing more, nothing less.
Having to deal with my epilepsy and all of its consequences did have an impact on my education. Whilst the seizures are of course the definitive aspect of the condition, the recovery periods (particularly after a fall) and side effects of the various medications are also very time-consuming. Although I had a very good support system at school, I unavoidably took a lot of sick days and due to my poor attendance record I was politely asked to leave after completing my GCSEs. Fortunately, I was able to take a year out to recuperate. After doing so, I joined a nearby college, finished my A-levels and later went on to university. My main advice for those with epilepsy seeking to do the same would be to learn how to communicate with others about your condition. Whilst talking about your physical and emotional self may seem like a huge obstacle initially, once you overcome that barrier it does become easier. It took me a little longer than most, however in the end I graduated from university with a 2:1 and to this day, it is one of my proudest achievements.
Although it’s a difficult condition to live with if I was given the option to, I would not change being born with it. I don’t mean to sound as if I like having epilepsy- that would not only be insincere but insulting to the millions of people around the world dealing with the fallout of it on a daily basis. If I could be cured of it tomorrow then I would jump at the chance. However without ever having had it, I am not sure that I would have the same understanding of or appreciation for the issues that disabled people face, be it prejudice, a complete lack of social and financial support or insufficient (or non-existent) health care. Through having it, I have learnt so much about myself and have been able to develop into a person that I can be proud of.