The Top 3 Stigmas Associated With Epilepsy

Throughout my daughter’s journey with epilepsy we’ve been confronted with a lot of people (family, friends, and strangers alike) who have made incorrect assumptions about it all because of the stigmas that surround epilepsy and those that suffer from it.

This is not only frustrating, but it can also be really damaging to an epileptic person’s self esteem and confidence when interacting with other people. In fact, we’ve had so many people wrongly assume things about epilepsy that my daughter stopped wanting to talk about it all.

It became something that she was ashamed of, and I know that’s happened for many other people with epilepsy as well. Especially other teens.

But the thing is, epilepsy is nothing to be ashamed of. And if people knew more about what it actually was and relied less on hearsay, then maybe my daughter and others like her would feel more comfortable being open about their condition.

So today I want to talk about the top three assumptions that I see people make about epilepsy. But first…

What Is A Stigma?

To me, the best definition of stigma was given by Bruce Link and Jo Phelan -

“Stigma exists when a person is identified by a label that sets the person apart and links the person to undesirable stereotypes that result in unfair treatment and discrimination.”

This definition pretty much sums up mine and my daughter’s experience with stigmas, I just hope we’ll someday be able to eliminate stigmas altogether. But baby steps first! Let’s get started with our first epilepsy stigma.

Number One - Epilepsy Is A Mental Health Disorder

Many people refuse to believe that epilepsy is a condition in which people can’t control their movements. So they come up with all sorts of other theories, and one of them is that epilepsy is a mental health disorder. And since mental health is highly stigmatized as well (but that’s for a different post”, this leads to the belief that people with epilepsy are simply “crazy”.

And although it’s true that people with epilepsy can have mental health disorders because having one doesn’t exclude having the other, these potential mental health problems are not the cause of the person’s seizures like many seem to think.

People with epilepsy can’t control their movements when they’re having a seizure. And people with epilepsy are NOT “crazy”.

This stigma is one of the many reasons why I think more people should be educated about the science behind epilepsy, so that they understand what’s really causing the seizure and don’t make their own incorrect assumptions or believe the stigmas they’ve heard from others.

Personally, my daughter and I have dealt with a form of this stigma. Many people thought that Rach was faking her seizures as a way to act out, and thought I should “discipline her” for something she couldn’t help! And these are the kind of suggestions that people are going to keep giving if we don’t beat this stigma.

Number Two - Epilepsy Is Caused By Demon Possession

Out of all the stigmas surrounding epilepsy, this is one of the most maddening. But sadly, it’s a stigma that has arguably been around since the beginning of epilepsy and formed its roots thousands of years ago. And a surprising amount of people, especially in certain religious communities, still believe it.

This stigma started because so little medical knowledge was had at the time epilepsy was first seen. This meant people drew all sorts of wrong conclusions about many different medical conditions and epilepsy was no exception. And because of the foreign movements that individuals having a seizure made, scholars at the time assumed that they were being possessed by a demon.

Whether or not you believe that people still (or ever could) get possessed by demons, the fact remains that people with epilepsy are not possessed!

My daughter and I have also come head to head with people who believe this stigma, particularly with some older relatives who chose to believe this assumption that they’d been taught instead of learning about what was actually happening. To say that this was hurtful for me and Rach to hear would’ve been an understatement.

Number Three - Epilepsy Is Contagious

I understand that seeing someone have a seizure can be a scary thing, and that nobody would choose to have epilepsy. But the idea that you can catch epilepsy in the same way that you’d catch a common cold needs to go! There are far too many people out there living in fear that if they come close to a person with epilepsy that they too will get epilepsy.

Epilepsy is not a condition that you can catch from another person, it is not contagious! People with epilepsy don’t deserve to be avoided because of a condition they can’t help.

This is a stigma that really has the potential to make people with epilepsy feel isolated, and it’s important that people start to understand it isn’t true. It’s an assumption that not only hurts the people suffering from the condition, but also spreads fear to others as well when there’s no reason for it.

One of my daughter’s friends when she was young was no longer allowed to hang out with Rach after she was diagnosed with epilepsy because her mother thought that Rach would give it to her daughter. And that’s the kind of situation I hope can be avoided in the future if this stigma is beaten.

Thanks for reading!

Thank you so much for reading this post. And if you know anyone that you think could learn from reading it or anyone that believes one of the stigmas mentioned today, then by all means share this post with them so that we can spread awareness together!

And if you have any experiences relating to confronting stigmas with epilepsy then please share them below. I’d love to hear about it, and how you handled it!