have u ever been ashmed ur epilepsy

[Belinda5000]

1.I use to be

2.why I can't control it


3.I still am.


I won't tell anyone.

 

[Autumn Breeze]

1. Yes. I worry that people I work with think I'm making it up.

2. No. I don't owe anyone an explanation about my brain misfiring.

3. Sometimes. And that's towards my family. I hate that I can't control it. Or stop it. I hate that it takes time and energy away from them.

 

[Fedup]

Its odd really, I suppose in a way I am ashamed but more ashamed of me and my limitations.

I do not go telling everybody I have epilepsy but I have no problem saying I do have epilepsy. The main reason I say nothing is I do not want pity.

 

[Autumn Breeze]

Thats it. The restrictions and limitations frustrate me and make me feel like less of an adult.

 

[Howll]

Not ashamed, no. I'm pretty open about it, nobody in work has ever said anything and have always been supportive. I'm pissed off by it though - I'm a self confessed control freak and the fact that this part of my life isn't in my complete control, even with meds and whatever there's still a chance, and that annoys me. It pisses me off that it's always on my mind and I can't let myself forget it, and every little feeling I'm constantly thinking "was that E related?" When I know in reality I'm just being a nut.

Never ashamed though, I can't help it so why be ashamed? Even if I had some condition that made me randomly projectile vomit and make chicken noises I still wouldn't be ashamed because it wouldn't be my fault.

 

[Cint]

I don't like the limitations that having E has put on me, either, like not being able to drive and my memory problems. However, I don't feel like less of an adult because of it. It could be a h#(( of a lot worse. I have to take the public transportation every day, and what I see some days breaks my heart. Homeless folks, disabled folks in wheelchairs on the street, pot pushers, druggies, some scary stuff.

 

[masterjen]

I am not ashamed of the fact that I have medical issues, but I am ashamed of the fact that I can no longer work full-time and not being a fully-contributing member of society goes against the grain of what I set out to do in my adult life. Add to that the fact that several friends(?) and even a couple of in-laws think I am just "milking the system"; now that really hurts. I don't tell people I have epilepsy unless it is hugely necessary and it is easier for me to avoid having to do so because for the past 4 years seizures have been nocturnal.

 

[Belinda5000]

I've always had restrictions and limitations so I guess you think I'm weird?

It doesn't bother me so much Belinda

 

[Belinda5000]

I am not ashamed of the fact that I have medical issues, but I am ashamed of the fact that I can no longer work full-time and not being a fully-contributing member of society goes against the grain of what I set out to do in my adult life. Add to that the fact that several friends(?) and even a couple of in-laws think I am just "milking the system"; now that really hurts. I don't tell people I have epilepsy unless it is hugely necessary and it is easier for me to avoid having to do so because for the past 4 years seizures have been nocturnal.

Jen, my relatives they do know how bad my seizures are and my health isand they have seen have seizures sine they were kids.
Belinda

 

[Belinda5000]

I refuse to let my e keep me from living and getting around and if I seize that's life.It has happened to me on plenty of occasions when i was out and people have panicked like when I'm in the hospital and nurses or docs panick.

 

[JJR1956]

I'm not ashamed. I'm too old and have other issues in my life to worry what people might think about me having Seizure Disorder. :clap:

 

[Autumn Breeze]

I was talking with my husband last night, this thread was the catalyst for the conversation. I asked him about my partial seizures because he said that I had had one last Thursday right when I got in the car after work.

I guess, ashamed, isn't the word I would use for myself. Embarrassed, sure. What he describes my behavor as during these...whatever...it's embarrassing to think that all these people are seeing me at my most (or almost most, it's not a TC) vulnerable.

I am glad that there are enough people that I work with that I do trust. I truly believe that they would take good care of me when this happens again.

But the feelings of shame, these are placed by other people on me. I am not ashamed that I don't have complete control over my brain. I feel ashamed when, like masterjen said, people accuse me of trying not to work, or work as hard, or just tell me that I'm faking it! Even a doctor has told me to my face "if the EEG is normal then you aren't having real seizures" as if that's good bedside manner.

So, thank you for this thread. Yes, sometimes I get embarrassed. But I am not ashamed.

 

[daviscy60]

Yes I am and do not mention it or talk to anyone about it. I have lost a job because if it. I work at a large company and have been carried out about 4 times in 25 years. Rumors I have heard is they think I'm crazy which I believe are because of this. Talking about it to my sister one time and she let me know that people with issues like this don't talk about it. Have no one in my family that I can talk to about it. So with this said... Yes I am

 

[Loopy Lou]

Usually it wouldn't be something i'd bring up in front of other people, but it's strange... this year, my uni class is rather small, there's only 17 of us, and everyone knows about it, and i've not hidden it, but other people in the class will bring it up. Not in a bad way though, it's just... there.

I guess they just accept it and they're considerate. And you should see the rate at which flickering lights get replaced by maintenance :roflmao:

I think it just feels weird to me because i'm not used to it being so out in the open.

In all other areas of my life though, generally i don't make it known since i've had my share of ignorance and lost jobs before. I didn't really intend for it to get out at uni, i guess i was lucky with the group i have.

 

[Belinda5000]

I've had my own mother tell me times I needed to a Pschiatrist.
She never thought of the side effects of the meds it was always me;I never tried hard enough for anything I was of course the dumb one.


I only married once , not 2,3,4 times and I've been married be 23 years in June.
I've over come a lot of health problems and I only finished high school which doesn't say much.

 

[Loopy Lou]

One thing that does bug me is not being able to drive.

It didn't bother me to begin with, but now i see people ten years younger than me that are able to just hop in the car and go anywhere.

When i do get back into work, i'm gonna need a car to be able to broaden my horizons a bit. I wanted to move back to Ireland and it would definitely be much easier if i was able to drive.

I feel like it's limiting my options for where i can live and work.

 

[Belinda5000]

If I have made it not driving my entire life you certainly can.Now just because I'm not able to drive or work but I do live places were I can get around were there is a bus system or even some subway.If I seize I seize.I won't put my life on hold and I do what I have to .

Belinda

 

[Loopy Lou]

Oh, i know i can make it with public transport, if i need to. No other option really, just got to get on with things.

But i can't help but feel a touch of jealousy all the same. I'm not gonna get all bent out of shape about it. You never know, maybe one day, my epilepsy will be under good enough control.

I have another few years to think about where i'm going to settle permanently anyway, and who knows what can happen in that time

 

[acshuman]

Feeling Ashamed Can Hold YOU Back

Feeling ashamed of my E is something that I have never let happen! I had something that was worse than my E happening to me as I grew up. I had an abusive female person(mother) in my life, and this made me put my E on the back burner, because the abuse bothered more than the E.
Luckily, I never had any schoolmates who ever hassled me about my E. I know that this helped me a lot.
I still was very lacking in the social part of my life before I moved out on my own! This was soon conquered when I was exposed to the world, and had to deal with it.
I have since learned from working with people who have problems dealing with their E that letting your E have too much control over your mind can be a very negative thing. The less you let your E control you, the better person you are going to be!onder:

ACsHuman:twocents:

 

[Frink]

I have never been ashamed of my epilepsy. I have been ashamed of other peoples reactions to finding out I have epilepsy.

Those who are ignorant about epilepsy should be ashamed, not those who have epilepsy.