shy about epilepsy?

[LMReggcellent]

We had our Epilepsy Assoc of UT board meeting last night and something interesting (and not quite on the agenda) came up and I'm curious to ask you guys. Not everyone on the board has epilepsy but we're all at least related to someone who does. The main question is this:

Are you shy or embarrassed about epilepsy? Are you open to talk about it? And I wonder how long it took you to get to that point. This subject came up when we were talking about our next conference.

 

[CQ:)]

I've never been shy or embarrassed about my epilepsy, I am pretty open about it.
I don't always blurt out that I have epilepsy but if it was to come up in conversation (eg why i wear medic alert bracelet) then I will probably mention it.

Where I am working now my work collegues are aware of my epilepsy, that the seizures are under control & they are all really good about it.
Two of my work colleagues have family members with epilepsy or are having seizures so Ive been able to discuss it with them & tell them more about the different seizures, how we are all different with meds & things I've learnt on here which help control seizures (eg diets). One collegue has a little grand daughter who only started taking tonic clonics earlier this year & she still hasn't been officially diagnosed yet so I have been telling him my experiences & trying to give him some info.
The other colleague has a teenage son who has been having seizures since he was about 10, he has tonic clonics but at the moment his seizures seem to be under control.

 

[Nakamova]

I'm a private person in general, so I don't tend to bring it up in general conversation. But I'm very open to talking about epilepsy if someone asks, or if the situation warrants it. And if someone has the wrong impression about epilepsy or people with epilepsy I'm not shy about setting them straight.

 

[arnie]

I'm a private person in general, so I don't tend to bring it up in general conversation. But I'm very open to talking about epilepsy if someone asks, or if the situation warrants it. And if someone has the wrong impression about epilepsy or people with epilepsy I'm not shy about setting them straight.

That's about the size of it for me, too. I have no qualms at all talking about epilepsy, and I have found that, probably in large part due to my attitude about it, other people don't get too bothered by it.

 

[valeriedl]

I'm a private person in general, so I don't tend to bring it up in general conversation. But I'm very open to talking about epilepsy if someone asks, or if the situation warrants it. And if someone has the wrong impression about epilepsy or people with epilepsy I'm not shy about setting them straight.

This is me too. I don't come right out in the start of a conversation with saying "Hi I have epilepsy, how was your day?" But if the subject comes up as to why I don't drive or work I tell them it's because I have epilepsy. If the person has questions about it I'll let them know about what my seizures are like and any other information they want to know. We don't spend the whole conversation talking about it.

 

[Cint]

But if the subject comes up as to why I don't drive or work I tell them it's because I have epilepsy.

This subject has come up frequently for me lately. People have asked me "What do you do?" and sometimes I so want to tell them it depends on my day.... if I feel good, bad or down and out. But when I do eventually tell them I do have epilepsy, they automatically assume the worse, which is okay I guess, for me, because I have experienced SP, CP and TCs and have suffered numerous injuries from them. I don't drive or work either because of it all and feel like the public NEEDS to be educated as to why some of us do not or can not drive or work. I do tell when I can!

 

[daviscy60]

Not that I am shy about it but don't talk about it because of being discriminated because of it... By both work and family.

 

[giveasmile]

I don't bring it up unless something happens that needs to be explained.

With rare exception my tonic clonic are only in my sleep and the ones people see; simple partial, complex partial and atypical absence are not thought of as "real seizures" or damaging seizures by the average person.

At best, the only response I get is, "Well you can still drive, right?" Well, no, I can't. (And it's an infuriating question because I want to so badly.)

At worst, I come out of a seizure very confused, frightened and disoriented-- not to any soft and reassuring voices but usually to find people pissed off because I haven't been listening to them or annoyed/embarassed by me, or laughing it me. It doesn't make you want to talk about it.

Maybe I'm answering this question on a bad day.

 

[valeriedl]

I talked with a friend the other day that I haven't seen for a few years who knows I have epilepsy.

He asked if I was still having 'episodes'. I'm not sure if he knew what to call a seizure or was just trying to be polite? I told him I was then explained that I don't have tonic colonic, the type that you shake during. I told him about what I normally do during my seizures. He said he saw someone have a seizure, the type I have, once and understood what I was talking about. He asked how many I have and I told him on average 6 a month. He was surprised that I had that many.

After a few minutes of talking about epilepsy, him asking most of the questions about it and me answering, we went on and talked about other things. I have to say it was really nice that he wanted to know more about it instead of just moving the conversation on quickly.

 

[Cint]

I don't bring it up unless something happens that needs to be explained.

With rare exception my tonic clonic are only in my sleep and the ones people see; simple partial, complex partial and atypical absence are not thought of as "real seizures" or damaging seizures by the average person.


At worst, I come out of a seizure very confused, frightened and disoriented-- not to any soft and reassuring voices but usually to find people pissed off because I haven't been listening to them or annoyed/embarassed by me, or laughing it me. It doesn't make you want to talk about it.

That sort of attitude would make me want to talk about it all the more. People need to know why you may appear to be "zoned out" and not listening to them. Those complex partials are real seizures and can be very damaging to the brain and body.

 

[N Sperlo]

I'm not one to talk much about my epilepsy, but I am not shy about it. I'm not going to bring it up because I don't like to think of it as a big deal or something that has to be mentioned.
If someone asks me about my epilepsy, I am perfectly happy answering questions or explaining something about it. I prefer someone understand the situation rather than assume anything about it.
I never had a problem talking about epilepsy.

 

[sjconner]

If people ask, I will talk about it. I will give them as much information as they want. My students are curious and ask lots of questions. They are troubled 16-18 year olds. I am honest and open about it. It is not a big deal to me so they are okay with it. I had a really good bout of arm twitching and jerking during class. I acted like it was normal and ok; they did too. Nobody mentioned it or stared or anything like that. They were awesome ... just a part of what Mrs. Conner does. No worries.

 

[AndrewIrish]

I talked with a friend the other day that I haven't seen for a few years who knows I have epilepsy.

He asked if I was still having 'episodes'. I'm not sure if he knew what to call a seizure or was just trying to be polite? I told him I was then explained that I don't have tonic colonic, the type that you shake during. I told him about what I normally do during my seizures. He said he saw someone have a seizure, the type I have, once and understood what I was talking about. He asked how many I have and I told him on average 6 a month. He was surprised that I had that many.

After a few minutes of talking about epilepsy, him asking most of the questions about it and me answering, we went on and talked about other things. I have to say it was really nice that he wanted to know more about it instead of just moving the conversation on quickly.

Ya know, in explaining my suspended license to a buddy at work, he used tha phrase 'episodes' - as did the cop who pulled me over and I was talking things through with the cop - both of these guys were like 'did you have an episode while driving?(I haven't), but that term 'episode' really rubs me the wrong way... I use the term episode when a little kid is crying and screaming and rolling on the floor... i associate the term 'episode' with a purposefully bad or irration behavior... honestly, I think half of people think Epilepsy is a psychiatric disorder and we're all lunatics who like to bite our tongues and shake on the ground...

 

[Janellie8]

I am terribly shy about my epilepsy. So bad I have never even talked to my own brothers about it. My mom has told them though. I just feel so ashamed. So lonely (when I am at home and every where else). But on this site I can relate to a lot of things people are experiencing and it makes me feel okay for just a second. I feel so alone because I have never met anyone else with epilepsy. When I think about my epilepsy, I think of myself as the "bad child" the child who my parents messed up on. My brothers are perfect. And I am stuck with this. I'm 20 years old and have had epilepsy since I was 6. I still have a hard time letting people know that I have it

 

[JaneC]

Janellie, less of the negative thinking! I don't think of my daughter as the one we messed up with, I think of her as the especially precious one who has been dealt a rough blow through no fault of hers or ours and needs a little extra love and support x

 

[Janellie8]

Janellie, less of the negative thinking! I don't think of my daughter as the one we messed up with, I think of her as the especially precious one who has been dealt a rough blow through no fault of hers or ours and needs a little extra love and support x

Ahhhhh!!! I try not to think about this the negative way, but the negatives beat the positives on this one I don't blame anyone for this, but its just hard you know? Thanks for the reassurance

Hugs,
Janellie

 

[Cint]

Ya know, in explaining my suspended license to a buddy at work, he used tha phrase 'episodes' - as did the cop who pulled me over and I was talking things through with the cop - both of these guys were like 'did you have an episode while driving?(I haven't), but that term 'episode' really rubs me the wrong way... I use the term episode when a little kid is crying and screaming and rolling on the floor... i associate the term 'episode' with a purposefully bad or irration behavior... honestly, I think half of people think Epilepsy is a psychiatric disorder and we're all lunatics who like to bite our tongues and shake on the ground...

:agree: I've always told my kids, who've witnessed many CP seizures and TCs growing up, that epilepsy is a brain disorder like my son's asthma was lung/breathing disorder. I even went to their school and explained epilepsy to their classrooms to let them know we are not lunatics. Folks need to know what to do if they ever witness a seizure.

 

[notime]

Personally, I cannot really have a social life as I am unable to get access to transportation so I stay home most of the time and I have no friends or close to other relatives. Right now, at least online I am open about it and even though trolls or people may attempt to make fun of it... I am still going to be open minded, and try to advocate for it as much as I can.

People are usually ignorant, and I know more than the people that surrounds me about epilepsy so I try to educate them like my relatives. It's a medical problem, and it's not my fault and the only thing I can do is try to live my life. If a seizure breaks out, oh well, if it happens out in public so be it... At least I can try to advocate to get rid of misunderstanding.

It's embarrassing, even though my tonic clonic seizures are controlled with medication.... There is always a chance that it will happen in public, so I try my best to let those around me know at least... Although, I lack experience with employment or peer pressure in the real world about it. Hopefully once I get a GED then I can move to another state with public transportation and move on with my life... I cannot stand where I live in basically a rural area.

 

[Belinda5000]

Shy about my epilepsy that's one thing I'm not.I don't understand why anyone would be ashamed of it.

I've had epilepsy for 50 years I wasn't ashamed when I was a kid or embarrassed. I'll talk about it and answer any questions anyone has.I'm refractory and always have been.

I've had seizures in public plenty of times and it doesn't bother me, why should it I can't control it.

If someone can't handle my sz's that's there problem.

 

[Janellie8]

Shy about my epilepsy that's one thing I'm not.I don't understand why anyone would be ashamed of it.

I've had epilepsy for 50 years I wasn't ashamed when I was a kid or embarrassed. I'll talk about it and answer any questions anyone has.I'm refractory and always have been.

I've had seizures in public plenty of times and it doesn't bother me, why should it I can't control it.

If someone can't handle my sz's that's there problem.

I wish I was more like you

Janellie