When Charlotte, from Eindhoven, stares blankly ahead for a few moments, it does not mean she is slow, disinterested or lazy. She is simply suffering from an “absence”, a consequence of her epilepsy. Yet she has been fired several times for that reason.
Charlotte is still outraged by this strong example of misunderstanding. She decided not to reapply but, together with fellow sufferer Boyan from Helmond, to start their own campaign about epilepsy. Therefore, the two now give guest lectures, information at schools and lectures on the subject. The goal: to promote understanding of the disease. “Over the years I have learned to live with the disease. But my environment continues to bother me. Almost more so than from the epilepsy itself”.
Fits
Epilepsy is a condition in which temporary disruptions in stimulus transmission in the brain cause seizures. Some people fall to the ground frothing and convulsing, but that picture does not apply to everyone. Charlotte has a form less familiar to people. “I suffer from fits, which is like daydreaming. Then suddenly you’re absent for a few moments”.
As if that wasn’t enough, she was diagnosed with another form of epilepsy in 2008. This caused seizures with sudden twitching eyelids. “The seizures are triggered by lack of sleep, fatigue, stress and hormone fluctuations, among other things”, Charlotte says. Consequently, every month during menstruation, she has a seizure anyway.
The outside world often does not take her illness seriously. This sometimes takes serious forms. “People question whether I have epilepsy. But I’m not going to make something like that up, am I?”, Charlotte says indignantly.
Too convenient
Even her employers didn’t bother to look into the condition. “I had lots of different jobs, but at each one they often thought I was too slow, too lazy or it was all difficult because of my epilepsy”, Charlotte says. “At such times you start to doubt yourself. Therefore, if I would have had a workplace without misunderstanding and suspicion it would really have been a world of difference for me”.
Boyan van Merwijk from Helmond also recognises himself in Charlotte’s lack of understanding. For years he suffered from so-called “tonic-clonic” seizures (tonic means cramped and clonic means shocking). “I suddenly lost consciousness and fell over. Then you get the part that people recognise and that is the convulsions and shocks”, Boyan says. “I wanted to enroll in the MBO (secondary vocational education) program in laboratory. I was rejected there then because of my epilepsy. That’s not allowed by law and is just discrimination”.
After the first guest lecture for a pharmacy school, the duo is now looking for other places to educate. “The greatest thing would be for “healthy” people to see others with epilepsy as ‘normal’ people and treat us with respect”, Charlotte said.
Source: Studio040
Translated by: Bob
