Hi

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Status
Not open for further replies.
Y

Yve

New
Messages
23
Reaction score
0
Points
0
Not a newbie to epilepsy, but a newbie to talking about it with a support group. I have always tried to keep my epilepsy as hidden as possible after facing a lot of stigma in primary/elementary school.

I was diagnosed with epilepsy when I was two years old, I'm now thirty, which was when my first tonic-clonic seizure occurred. I have both absence and tonic-clonic seizues. Like probably a number of you, I have been on a number of different medications over the years, but I am currently taking topamax.
 
Many of us have kept quiet over the years about our seizures though there is a lot you can learn and share with other by being in a good support group that is willing to go the distance for you.
 
Hi,
I'm a mom of a 19 yr. old son who's been having seizures since age 12 1/2. He too has kept quiet about his seizures. He has told his close friends and they are aware of what to do if he were to have one. Lately, since he's just started college I'm learning from him that he's talking more to his teachers about his condition. He found one teacher who has a son with epilepsy to talk too as well. It's a start for him as he "hates" to let others know. I first thought he was in denial, but after reading other messages here I realized he's embarrassed. Learning now that he's starting to slowly open up is a giant step for him in my book.
Marian
 
Hi Yve, welcome to the forum. :hello:

Marion makes a good point. I'm sure that for many people there is some reservation about stigma, but also a lot of embarrassment about not being completely in control.

My wife is a consumate extrovert. Shortly after we met and started seeing each other she told me she had epilepsy in a matter of fact way like it was no big deal. She has always told people about it with the same manner and I think her attitude about it has a lot to do with how people react to the news.

Most people are ignorant of what epilepsy really is or entails. I was one of them. In the absence of that knowledge, people look to the speaker for clues on how to react. My :twocents:
 
Hi Yve: I never was quiet about it becuase everyone knew,I had my first grand mal after lunch in 7th grade. My parents and my childhood nuero taught life goes on, "epilepsy is not an excuse" , "attitude is everything". If I am still living life to the fullest,no one can think epilepsy "stops me". Attitude is everything !!!!!!
Welcome to the board , I am off my meds for a month now . Beofore I took homeopathy and a tab of mysoline. To get rid of the last tab of mysoline I started the Gard diet 5 weeks ago and I am doing well. Have any questions feel free to ask.

Riva
 
Thanks for the warm welcomes!

Congratulations on being off your meds for a month, Positive/Riva, and it is great news that the Gard diet is working so well for you! Just to clarify, my silence about my epilepsy is not because I see it as an excuse or as an hindrance to living my life - quite the opposite. I know I can do nearly everything, and as a child I took a lot of inspiration from people with epilepsy who were/are at the peak of their profession, like Dostoevsky and the South African cricketer Jonty Rhodes. I still take inspiration from them when I am tired and fitty, and need to push myself that bit further.

Bernard: I think Stacey's confidence is wonderful. I read about her recent stint in the hospital, and I am really glad she is back home again.

execwife2002/Marian: It is great that your son has found someone to talk to about his epilepsy, and that he is feeling more comfortable about opening up. As Bernard mentioned there is a lot of ignorance about the illness and this can lead to positive and negative reactions. Some people I have spoken to want to understand more, others started speaking to me slowly and loudly after finding out or think they can catch it. hehehe!

Agreed, Zara. It is very supportive here.
 
Welcome Yve

Looking forward to getting to know you. I just love Mr. B's site. Been with him a long time, he's one of the good guys, the man in the white hat.

c9673d0d.jpg
 
Last edited:
I am actually quite open about it.

Everyone I work with and most of my acquaintances are well aware that I have seizures and how to react to them. The last one was at a company outing at the ballpark and my co-workers intervened and prevented the strangers who wanted to "help" me from doing anything. Personally I don't give a cr*p if someone things there is a stigma attached to epilepsy because that would be a person who has no understanding of the disease and if they are not willing to learn I can't prevent the from remaining ignorant.
 
I have found that since I've joined this forum I've been able to share a lot of the info. I have learned with my son. Tonight he told me that he was going to share his situation with some of the new friends he has met at college. I think once he makes new friendships and these friends like him for him he then feels more comfortable telling them that he has epilepsy. We talked about this and he told me that once people get to know him and then he tells them the friends don't ditch the friendship. Some of the friends want to learn about his epilepsy and what they can do to help. The few that have shun away are the friends that he feels were never his friend and he doesn't need that negative energy around him. I think meeting new people and making new friendships have helped him to not "hide" his epilepsy. It's another positive step for him for his future. You know what I mean?
Marian
 
:hello: Yve!

Welcome to the boards! Sorry I missed
you earlier! You can learn a lot from
everyone in here. And like Andrew (Zara)
said, a lot of us have been silent, or
like me, which I've swept it under the
carpet; ignoring it with hopes it would
"go away forever".

I was born with this, and I'm over 45+,
but I really act like a 19 years old, but
Birdy would say I'm more like a ... well,
I do have a right to remain silent!

:lol:

But there's a STIGMA revolving around
it, as many people have the MINDSET
filled with MYTHS, MISCONCEPTIONS,
and OLD WIVES FABLES.

It's a high time to bring it all out of the
closet --
THE TRUTH!
 
Hey Marian, that's great to hear. :clap:
 
I realized it was my place to educate people about this.
Where many were concerned when she first got ill, they have since showing interest. Guess it is hard for some to inquire about someones health. Or, they see her and she looks fine, but they dont' know what a rough go she is having with the meds and how that effects her daily life.
I am matter of fact about it. If she had heart disease it would not be any different. I don't speak of it alot in front of her. I let her explain why she won't be getting her drivers permit and such. But I do share with those around me what is going on, so that in the event they are needed they will understand. It helps to alleviate the fear.
 
Status
Not open for further replies.
Back
Top Bottom