Dealing with epilepsy · Misconceptions

What people get wrong about “looking fine” with epilepsy

Codrin POLeave a comment

“You look fine.”

That sentence does a lot of work for people.

It closes the topic. It removes discomfort. It skips the part where they might have to think a bit harder.

And if I look fine, then everything is fine.

Convenient.

Looking fine is a performance

Most of what matters isn’t visible. People might see a seizure. They don’t see what comes after.

The confusion.
The fatigue.
The quiet “something’s off” feeling that doesn’t go away just because I can stand up again.

But if I can talk, walk, respond, then the conclusion is obvious:

Back to normal.

Except it’s not.

Continue reading “What people get wrong about “looking fine” with epilepsy” →
A friend in need
Blog · Dealing with epilepsy · Way too personal

A friend in need

Codrin PO

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.

Continue reading “A friend in need” →
Dealing with epilepsy

Keeping notes

Codrin PO

I first started writing down the number and dates of my seizures about 12-14 years ago, before moving from Romania to Belgium. At first, I just tried to remember the numbers of seizures I had in a year, then I remembered the dates. I remember clearly my first seizure, because, well, it was “my first” and it was in an usual setting and caused a whirlwind of things going wrong in my life.

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Dealing with epilepsy · Way too personal

Professional cuddling for epilepsy

Codrin PO

Professional cuddling, here is something I didn’t know existed. I found about this due to a friend. There are people out there, others than psychologists, pshyciatrists and friends, that offer to help you with a nice talk, a sensitive discussion and a cuddle (for a fee, of course).

But how can this help people with epilepsy?

Continue reading “Professional cuddling for epilepsy” →
Blog · Dealing with epilepsy · Way too personal

Is it fear or lack of respect that you see the most?

Codrin PO

I was speaking with one of those Facebook friends that you never met the other way. She also has a very specific disorder, although not epilepsy, but close to the spectrum.

When asking what she hates the most about her condition, she said “the way the others perceive her”. Thinking about epilepsy, how do friends and acquintances see you and what do you hate about it? I saw in the eyes of people that know about my epilepsy many things, but two stick out:

  1. Fear – people fear that you’ll have a seizure anytime, anywhere. But the fear is not that you’ll get hurt, but that they won’t be able to handle what is happening.
  2. Lack of respect – there are many myths about epilepsy (see my past articles) and many people believe them. Many people think that we are all photosensitive, or that we inherited it, or that we have a smaller IQ because of it. The last one is the one I saw many times, regardless of saying to people that Caesar, Dostoyevski, Agatha Christie, Alfred Nobel, Van Gogh and Theodore Rosevelt (among many others) had it.