does anyone else....

[monsters_mommy0519]

feel like theres no one who understands what there going thru? beacuse ive had epilepsy for 10 years, and my whole life i've been teased and lost friends over it. i just dont understand why ppl have to be so cruel just beacuse they dont know what epilepsy is, and the thought of a person having a seizure around them freaks them out doesnt mean they have to shun others.

 

[RobinN]

Yes it is cruel at times. My daughter has also had her share of cruelty. She does seem to find support however by picking herself back up after an episode and putting one foot in front of the other. Others are impressed by her strength and determination.

We all here at CWE understand what is going on, and we use this forum for support.
I don't understand why people are rude and cruel, but it has taught me a lot about social stigmas.

I hope that you have a good day tomorrow.

 

[Crystal11]

I think with any disability especially one that is visible or at least visible when a seizure comes, causes people to freak out- but it is due to lack of knowledge about Epilepsy or a seizure. People first think of the worse or think someone is dying etc..
I have more visible disability of blindness and deafness.. while Epilepsy is invisible until a seizure comes.
People seem my guide dog, and also my hearing aids or an interpreter with me.
While in high school, they thought I was low functioning or severely disabled but to me, I wasn't- I was trying to do everything else others around me were doing. I was required to do the same work etc. Definitley hated that kind of attention and it made me way to self-conscious and caused me stress.

People have harassed me all through school, even about being a Twin! Wow some people are just mean.

When I went to college, I went to classes with adults and students my age and they seemed to be very mature and didn't make fun of me or my twin and seemed to be very willing to learn about our disabilities.
I graduated with my B.A. in vocational rehabilitation counseling where we had to learn about many disabilities- since we would be working with many clients. When we discussed Epilepsy, I and another student spoke about it some- and come to find out, more people knew about Epilepsy through a friend of family member than I would have realized.
We feel we have to hide it, or try to not mention it due to public fear or worse.

Take care,
Crystal

 

[knothing]

I have seen several reactions to seizures and how people are. People are afraid of what they do not understand (like kids and the dark) and when you look at Epilepsy (or seizures) it is a widely misunderstood area. It is not like certain disorders/diseases that run a specific path. When AIDS was new the mystery of it drove people to extreme behavior but now it is better managed but again it runs a certain path and we know more so it helps calm the stupidity/fear of the unknown.
You cannot stop the reaction but you can manage how you handle it and educate when possible. If someone asks questions at least they are trying to understand so answer away. If they are treating you with 'kid gloves' you can either tolerate or put an end to it. If you sense fear force the education and squash the fear or eat squash (I always get those 2 mixed up).
You have the strength to pick yourself up after a seizure so you do have the strength to be stronger than the others who have fear. You have the knowledge which give you the power.
shun = fear......... I hope you find the all the people you need in your life and CWE is a good place for finding some friends, support, and on occasion the virtual hugs you need.

Welcome to CWE!

 

[PhylisFeinerJohnson]

When I was growing up, epilepsy was my dirty little secret. (Not too effective when you fall down 4 times a day!) So I decided to tell one person in each situation that I had epilepsy and what to do if I had a seizure. Gradually I became more comfortable with myself and told more friends. I figured if they couldn't accept then, they weren't really very good friends at all.

The hardest time was dating. Not a lot of 2nd dates when I was a teenager. But as I grew older, I began to accept myself, along with my epilepsy. After all, a lot of people have much worse health problems.

Then, one night, I had a flaming seizure on a date and the guy was so sweet and gentle and considerate, I couldn’t believe it. Kind to ME? Little old damaged me? I was floored and said to myself: “He’s a keeper!” And he has been for 30 years.


Just hang on and don't let this "sleath" condition rule your life. How you live and what you do is up to YOU!

 

[Chris515]

People can be cruel unfortunately. A lot of us here have experienced this. For me it was worst in high school.

If people don't want to be your friend because you have epilepsy, then they're not worth your time. But you'll move on and find people who care about you for who you are and will accept your epilepsy as a part of you.

You have us here, we all understand what you are going through and are always here to listen.

 

[Rae1889]

I dont know...
I havent experianced any creulty yet. I have experianced the ignorance where people just genuinely don't know what Epilepsy or seizures are and they think what they are doing or saying will help, but infact it still hurts my feelings. even though I know they didnt mean to.

I guess I am lucky in that respect to know that my E developed into noticeable seizures around 18-20 and I was able to hide them for a while. but my friends now know and they are fine with it.