In my first years with epilepsy, I was scared of telling anyone about it. That’s because I was diagnosed at 14. It’s hard enough for an introvert to make friends and adding the image that epilepsy gets in society would have made it worse. In my early years, I didn’t have too many seizures and they happened at home.
Going to university, I had my first public seizure – right before taking one of my first exams. I would have preferred honestly to take the exam instead. In university, I had good friends that knew and understood me. I realized that there are people out there that actually look at the person and not at the disorder. That was good. Not teenagers, but still not adult persons (between 18-24) aren’t judgemental, it seems.
Moving forward, as an adult the number of seizures starting growing as my neuro started experimenting with different drug combination to see what works. There isn’t a solution for all, unfortunately. Now, with more seizures (most at home), I started having them in public a bit more. And, on this side, I realized that the ones that judge you are actually the adults, the ones that should be more knowledgeable or informed. But, for most people, the source of information is the TV or social media that depict epilepsy as falling down and seizing, and that’s it. Some sources say that people with epilepsy are autistic (about 1/3 of people with epilepsy are on the spectrum) or less intelligent than the average person. Looking at Albert Einstein, Thomas Edison and Alfred Nobel, I wouldn’t say they weren’t so smart, epilepsy and all.
As an adult with epilepsy, you still need friends. Some people understand you, but most people don’t. So what to do when you’re in need of a friend to talk to?! Reach out to epilepsy groups on FB or join an NGO dealing with such issues? Those aren’t friends (I’m in multiple such groups on FB), but people that deal with the same issues.
What do you do if you just want to someone about issues in your life? Whether you have epilepsy or not?
Dealing with epilepsy 