Artículo para EpilepsySparks blog, Londres.
I often hear stories of people who have had epileptic seizures at school, at university or in the workplace; and who feel embarrassed to have been seen. I have nocturnal epilepsy, which means that I have seizures while I’m asleep. Some people are shocked when I tell them – until I then tell them that there are over 40 different types of epileptic seizure!
I’ve been free of generalized seizures for 4 years; which used to hit me at around 3am. Sometimes I have focal seizures during the night, which usually happen when I’m falling asleep.
I'm from Colombia; a developing country in South America. There is often a stigma attached to epilepsy in countries of developing economies, due to to the fact that there is less up-to-date, easy to access and easy to understand information about it. Nobody talks about it.
As a child
Some people feel embarrassed about having a seizure in public, but when I was a little girl and felt a seizure coming in the middle of the night (this feeling was an aura), I literally prayed for someone else to see me, help me and just stay by my side until the seizures went away. It’s ironic, isn’t it? What would be awful for one person would be a treasure for another. Amazingly (for me), my older sister would wake up and come over to me whenever I had a seizure. She was like an angel to me.
University
Going through university was a challenge. When there were very important exams (which are normally stressful and exciting), my sleep was disturbed by my epilepsy. People use to say: “you should try to sleep well the night before the exam”, but I would have focal seizures during the night and then have to still take my exams the next day! I like to think that I deserve a double-merit for my degree, because in order to study, I had to fight and win the battle with epilepsy!
Work Initially, finding a job in Colombia was hard because it is not usual to understand that a person with epilepsy can often work. Some managers prefer to not hire people with the condition because they don’t know anything about it, and don’t know what to do if someone has a seizure. People used to advise me not to mention my epilepsy in interviews or recruitment medical examinations (to avoid discrimination), but despite my young age, I ignored their advice. I have always repeated to myself that I am more than capable, and so why should I have to hide the epilepsy?
At the end of the day, after stating that I have epilepsy, I’ve found amazing opportunities; with great bosses who were understanding and who didn’t judge me for my condition.
Each day at work is an epilepsy-challenge. Even if I’ve had a seizure during the night (which can be induced by stress – e.g. making an important decision) I just have to get up, wear my “super warrior suit”, go to work, and get on with it.
Fundepsia - opening up
It took me many years open my heart and find people to talk to about my epilepsy. Today I lead a project called “Fundepsia”. One day I told myself: "If nobody talks about it, then you just take the first step" and that's how Fundepsia came about. Fundepsia, is a personal challenge. My goal is to raise awareness of epilepsy and break the social stigma about the condition. I hope we (our members) continue to grow as a team, and together create a support network for many people living with epilepsy. We will be there for those who might have otherwise been overcome by myths, shame and depression.
Attitude & summary
Despite my epilepsy, I have a normal life! It’s a life which is challenging and tied to a condition that can be frightening at times, but I ask the questions: “How courageous are you? How much do you want to get ahead? What do you think you are capable of? How much do you love what you have decided to study? And most importantly, how do you usually see the glass; half full or half empty?
For me, epilepsy does not limit you; it challenges you. it makes you special. It doesn’t create barriers; it opens new paths for you. If you are reading my article and you have epilepsy, you should know that there are always two options, fight or flight (giving up). If you haven’t yet reached your goals; you fight for them. We are more than 74 million people around the world, who each day, fight for them.