Embarassed!

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JillT

JillT

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For the past 26 years I have always been embarrassed to admit I had epilepsy. In November, I finally stepped out of the proverbial closet and admitted, "I HAVE EPILEPSY!"
I've also actually looked online to find out what an aura is. No one ever said it could be a simple or complex partial seizure. I've been trying for 26 years to remember if I smelled or saw anything strange. When you have a concussion, it's kind of hard to remember what happened the minutes before. I've been having Auras for years. I just never called them auras. I never associate them with Epilepsy.
Tunnel vision, light headed due to drop in blood pressure...
Going from having a seizure every two years to 13 seizures in 45 days can really be educational, and hard on your driving privileges.
 
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Hi JillT, welcome to CWE!

I'm glad you've found us. There's nothing to be embarrassed about in this crowd! And a lot to be inspired by.

Best,
Nakamova
 
JillT.

You are so warmly welcome.

My Son 26 :) has E. Diagnosed end of 2009 but had discreet seizures in youth before T/C arrived. Driving license at 23 - gone by 24.

He was saying to me recenlty, I’m not ashamed nor scared of E (he said – I may need to live my life with this). He actually (truly said this), when I tell people I have E and that I could potentially have a seizure in front of you he almost enjoys the look on their faces. So he is seeing the flip side :) not one he would play on either.

We talk about it, a lot. We never stop looking at the potential triggers and nutritional (and some) ways to minimize/reduce med side effects and improve quality of daily life (minimize stress).

Tons of great info here on CWE, support and a darn good laugh here and there (we can all use that).

Chaz
 
In November I became a Hope Mentor. (Helping Other People with Epilepsy) through my local Epilepsy Foundation. That's what started my search to learn more about my own disorder. I haven't been able to do any mentoring like they might hope, but I'm hoping this will change.
 
Wow JillT,

A Hope Mentor, your heart is sure in the right place, the rest will follow in time.

For change is the one and only thing we are guaranteed :)

So glad you took the time to share with us and keep us posted..
 
Hi Jillt,

Welcome to our party.

I have learned so MUCH in this forum and I hope this will be the same for you. I'm 60 years old, I joined July of 2011. I really think this forum saved my life. In this forum I found so much that I didn't and had NOT known for so long.
The people here are great in sharing and giving HUGS.
 
Welcome

Welcome the is wonderful site. You will find many knowledgeable and compassionate people here. Feel free to say what is on your mind, because someone here will have been there before and have insight.
 
Hi Jill,

I've had epilepsy now for 30+ years and have never been embarrassed to tell others. Of course, the seizures themselves are embarrassing at times, but that's part of it. So I explain it to folks if/when it happens. Of course my CP seizures were happening 4-5 a day before surgery, so I got to the point I had to tell others. Then they progressed to TC's after surgery. I've gone without driving privileges off and on for years.


JillT said:
In November I became a Hope Mentor. (Helping Other People with Epilepsy) through my local Epilepsy Foundation. That's what started my search to learn more about my own disorder. I haven't been able to do any mentoring like they might hope, but I'm hoping this will change.
Click to expand...

Being a Mentor will help you overcome your hangups about epilepsy. I've done volunteer work with the Epilepsy Foundation for years off and on and have shared my story. And yesterday at a coffee shop a friend asked me about my experience(s). The son of a friend of his is having uncontrolled seizures now and needs info. So you never know who you may help.
 
Don't be embarrassed to tell people that you have epilepsy, there's nothing to be embarrassed about!

Most people however, when they hear the word "epilepsy", think that at any moment you are going to fall on the floor infront of them and start shaking like a rabid wolf!!! They don't understand that there are so many more seizures than ones like those.

When people ask about my seizures I tell them that I usually just stare off into space and don't talk right for a while. They have no idea that is a seizure.

You will find alot of people that deal with the same things that you do on here and will beable to give you alot of advice, nice to meet you!
 
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