Epilepsy Myths and Misconceptions.

[ehinOWHEN]

I’m curious, what’s one myth or misconception about epilepsy that people have, or wish more people understood better?

For me, it’s the assumption that seizures are just physical convulsions and that people can’t experience them in silence.
There’s so much more going on that isn’t visible to the eye.
And considering where I’m from, being a really religious country. There are lots of people who believe Epilepsy is some sort of demonic attack. Trust me I’m a living testament to this
What about you?

 

[gina19]

That we don't need to be treated like precious gemstones. Like, you touch us and we're just going to break...

I mean sure, Seizures do need attention and people to help.

But that doesn't mean that we're not as strong as anyone else, less inteligent, need to be placed in some sort of bubble, etc etc.

We can live normal lives too. We can play sports. We can go shopping for ourselves. we can ride pubblic transport

We can do things just like everyone else, but we just have limitations, and people need to understand that when you do have a seizure, you're not " broken", it just comes with the condition

 

[ehinOWHEN]

That we don't need to be treated like precious gemstones. Like, you touch us and we're just going to break...

I mean sure, Seizures do need attention and people to help.

But that doesn't mean that we're not as strong as anyone else, less inteligent, need to be placed in some sort of bubble, etc etc.

We can live normal lives too. We can play sports. We can go shopping for ourselves. we can ride pubblic transport

We can do things just like everyone else, but we just have limitations, and people need to understand that when you do have a seizure, you're not " broken", it just comes with the condition

Absolutely, Gina! Your point about being seen as fragile is so true. I think a lot of people don’t realize how strong and resilient someone have to be to deal with seizures on top of everything else.
It’s like they only see us during the tough moments, but they miss out on all the other times we’re living just like anyone else, navigating life, doing our thing, and proving that we’re capable.

Breaking down these misconceptions, one discussion at a time, can help people see that, while we might have limitations, it doesn’t mean we’re less capable.
Thank you so much for sharing this!

 

[Porkette]

Epilepsy was going on back in Biblical times and people didn't understand it then and that's why they
would say a person was demon possessed.
A few yrs. ago parents had a exorcism done on their daughter because she tried 1 seizure med and it
didn't work. This happened back in the 1970's and the parents went to jail for murder. A movie was
made about it around 2005 called "The Exorcism of Emily Rose"

Seizures are nothing more than to much electrical activity in the brain which in turn triggers the seizures.
The big problem in the world is that they don't teach much about epilepsy so when they see a person
have a seizure many people are very scared but it's no big deal. After the seizure is over you carry on
living a normal everyday life. Take a look at Elton John he's had epilepsy for yrs. and he's a famous
musician in his 70's now.

Wishing you only the best and May God Bless You,

Sue

 

[Sabbo]

I'll definitely agree with you about all seizures being convulsions. I only had simple partial seizures until about 25 years ago when I suddenly started having complex partial seizures as well. My simple partial seizures weren't even diagnosed as seizures until I was nearly 15, after I had 3 or 4 convulsions. Until then (& even sometimes after), classmates often thought I was just pretending to feel ill so I could get out of doing thigs.

 

[Porkette]

I'll definitely agree with you about all seizures being convulsions. I only had simple partial seizures until about 25 years ago when I suddenly started having complex partial seizures as well. My simple partial seizures weren't even diagnosed as seizures until I was nearly 15, after I had 3 or 4 convulsions. Until then (& even sometimes after), classmates often thought I was just pretending to feel ill so I could get out of doing thigs.

Hi Sabbo,

The same thing happened to me only it was my teachers who thought I was faking seizures to get out of class and one
day my math teacher belted me in the face while I was in a seizure. When I got home from school the one side of my face
was black and blue and my parents thought I was in a fight it wasn't until the next day when I went to school when my classmates
told me the teacher hit me that I found out what happened but after that my mom came to the school and the teacher was fired.
Wishing you only the best and May God Bless You,

Sue

 

[ehinOWHEN]

Epilepsy was going on back in Biblical times and people didn't understand it then and that's why they
would say a person was demon possessed.
A few yrs. ago parents had a exorcism done on their daughter because she tried 1 seizure med and it
didn't work. This happened back in the 1970's and the parents went to jail for murder. A movie was
made about it around 2005 called "The Exorcism of Emily Rose"

Seizures are nothing more than to much electrical activity in the brain which in turn triggers the seizures.
The big problem in the world is that they don't teach much about epilepsy so when they see a person
have a seizure many people are very scared but it's no big deal. After the seizure is over you carry on
living a normal everyday life. Take a look at Elton John he's had epilepsy for yrs. and he's a famous
musician in his 70's now.

Wishing you only the best and May God Bless You,

Sue

Oh wow Sue, Thank you so much for sharing this. It’s unfortunate how much stigma and misinformation still surround epilepsy, even in modern times. What you mentioned about exorcisms hits home for me more than I’d like to admit. The level of ignorance surrounding epilepsy in my home country is so wild, I’ve had my own unsettling experiences as regards to this. It’s something I’m still processing and working through, so it’s a bit triggering to get into right now. But I hope to talk more about it someday when I’m in a better place. It means a lot to see someone who understands just how deeply these misconceptions can affect people.

 

[Sabbo]

Part of the problem is lack of education. Other there is so much more info/education about other health conditions. Epilepsy affects SO many people, yet the lack of public information/education is UNBELIEVABLE!!

 

[ehinOWHEN]

Part of the problem is lack of education. Other there is so much more info/education about other health conditions. Epilepsy affects SO many people, yet the lack of public information/education is UNBELIEVABLE!!

Hopefully this doesn’t bring animosity. But I’m speaking from personal experience here. A huge part of the problem where I’m from, is the clinginess to wild religious beliefs and practices. We’ve even got some educated people, some even championing insane practices by churches, mosques and other religious groups.
And as regards the lack of public awareness I couldn’t agree more honestly. I hope to do this though, when I’ve got some stability. Because there’s so much that could be done. A lot!

 

[C0urt]

That is always drugs, I must be an addict

 

[Sabbo]

I agree with you about that. They may often suspect drugs when see a person having simple partial seizures, maybe even complex partial seizures. I've injured myself SO MANY times during complex partials that I have told family members NOT to take me to the hospital UNLESS ABSOLUTELY NECESSSARY. The ER personnel had constantly started asking if I was being abused at home because of the severe burns I'd basically give myself during the complex partials.