are you ashamed?

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I was diagnosed with epilepsy on the first day of ninth grade. I was late to school because of a rush trip to the hospital since my mother found me having a seizure and she didn't know what was happening. All of my friends made fun of me because I was late to school - I would be "the bad student" because of it. But I was proud! Throughout the year as I learned more about epilepsy I made fun of fellow ninth graders because they didn't have orders from their parents to take drugs before and after school. I earned the nickname Shake & Bake, and even had it published in the yearbook as a caption underneath a picture with me (of course it helped that I was on the yearbook staff). I told them I had Grandma seizures because I was the best grandchild ever and then laughed because I knew they were grand mal. I told them I had toxic clonic seizures because I was the coolest person ever to take drugs and then laughed because I knew they were tonic clonic. I told them that I could not eat caeser salads anymore - I had to have seizure salads. I laughed when they saw me have seizures, saying "I bet you can't do that"! And I told them about a really cool place called Rx R'us that they couldn't go to because they didn't have to take prescription meds twice a day. And my XR tegretol is way better than anything they could take because it had a T on one side and a tiny hole on the other - and I designed it myself! We all knew how to make good of something different and scary. Ah, the high school jokes. I sure wish things didn't have to change so much when I reached college. Fourteen years later, I still need to laugh about epilepsy but I'm scared to tell new people.
 

Nakamova

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I'm not ashamed about having a seizure disorder, but it's not the first thing I tell people about myself either. Because my seizures are controlled, the topic doesn't come up that often. But if it does, or if someone asks me why I'm taking pills, then I don't hesitate to fill them in. I usually "seize the moment" to give them an educational earful about epilepsy. Especially starting tomorrow -- November is National Epilepsy Awareness month!
 

Cint

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I'm not ashamed or afraid of telling others that I have epilepsy, but I usually don't tell people when I first meet them. I wait until I know them better because I have refractory epilepsy. After trying many meds, having brain surgery, and the VNS I could still have a break thru seizure and people around me need to be aware.

All of my friends made fun of me because I was late to school - I would be "the bad student" because of it. But I was proud! ..... I laughed when they saw me have seizures, saying "I bet you can't do that"! Fourteen years later, I still need to laugh about epilepsy but I'm scared to tell new people.
I don't understand why you can laugh about it but at the same time your afraid of telling people.:ponder: Especially since you joked/talked about it through school. IMO, epilepsy is no laughing matter. I can laugh at myself, but not at the cruel seizures and the damage that can be done while experiencing them.
 

Wally

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I almost never tell anyone except those closest to me. Everybody expects you to have a seizure at any minute and gets all freaked out. Even my wife was pretty worked up when I was first diagnosed. If she heard anything unusual, she'd come and check on me. She's a RN too!
 
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Okay perhaps ashamed wasn't the word to use yesterday. Now I want to clarify something. I didn't mean to say that I was too scared to tell anybody now. I have no problem telling some people why I walk places or why I have to wait for the bus to go someplace and back. It's people like my employers or the people I work with when I hesitate to reveal epilepsy so lightly. I didn't have a problem in college - I incorporated epilepsy and seizures into every speech, presentation, article, etc as often as I could. Then when I left college and started interviewing for my first full time position I did not know when or how to disclose my uncontrolled seizures and it scared me to tell others because it was my job rather than a casual conversation. Especially since epilepsy has lost me a few jobs. I have to laugh at epilepsy to stay smiling and remind myself that seizures do not have to have control over my emotions - I learned that the hard way a few times. So I suppose I'm not ashamed to have epilepsy, nor do I keep it a secret. It's more deciphering a who/when/how to bring it up. I hope that makes sense and you understand.
 

epileric

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I can understand that. I'm pretty open around friends. Depending on the person I either wait until they've accepted me as a friend before I say anything or if it comes up earlier I'll say something so that if it makes a difference to them then no great loss to just an acquaintance.

I have learned to hide it at work though. That's where I don't need for my boss to be looking for a reason to get rid of me. I have been told where I am now (Ontario) that if I have a seizure & it effects my performance I'd be best to mention why I wasn't up to par because here the employer has to accommodate me & if I do get fired the moderating group seems to be more on the side of the complainant.
 

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I have never been ashamed about having epilepsy. To me it's just part of my life at the moment & something I have learnt to deal with.

I have always been pretty opened about my epilepsy & if anyone notices my medic alert bracelet then if I know them well enough I will tell them about my epilepsy.
 
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huskymom

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I'm an open book and Epilepsy is just one chapter of it. If that freaks people out, then too bad for them, cuz they are missing out on a fantastic person :)
 

petero

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I'm not ashamed.
but also I am terrified of having a seizure in the wrong place in Dallas.
the worst experience of my life was going to the city hospital with my mom in tow behind my ambulance- and that devolved into utter hell.
having a seizure in public, alone, here scares me. this city feels like a regressivist yokel shithole a lot of the time. kidding, but that I might end up on a pyre or gallows does not seem too far fetched considering the hospital is that bad.
 

Aubrey

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Am I ashamed... hm? Maybe. I always feel like somebody wherever I am should know I have epilepsy because I :soap: hate ambulances - just call someone from my cell list! But I am really random about who I will tell and who I won't. Sometimes I will be talking to somebody and I will just tell them if it comes up (like why don't you drive). Oh I have epilepsy, the State doesn't like it if I do that. Other people, I will just about unhinge if they happen to find out about it. And maybe I have known them for months and they are perfectly nice. There really is no discernible pattern to it.
 
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I'm very open about my epilepsy, but I guess I'm too open about it because I wish I could have like funny phrases about it on like shirts or buttons or something but my mom told me it was a bad idea. I'm a senior in high school and yes, I do listen to my mother. But this time it was because she unfortunately had some really good points:

1. They may insult other epileptics who aren't as comfortable with it as I am (Though I feel like all these "F*** epilepsy" shirts are pretty darn insulting - I do NOT own one)
2. When I apply for a job, although technically we shouldn't be discriminated against, if the employer knows I have epilepsy they will probably take into consideration that I will cost them more due to medical insurance.

Why are parents always right?
But this is November. This is MY (and your) month. I will wear purple loud and proud. I changed my Facebook profile picture to one my mom took of me during my 24-hour EEG. It was actually hard for me to do because I didn't want my peers laughing at me, but as soon as I did it, I felt really good about my choice.

So, to answer your question, am I ashamed? No, but it isn't always easy. There are parts (such as EEGs and crappy side effects to meds) that I don't want to talk about and let others see, but if I don't, how will any of them ever know what the reality is?
 

Crash

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Mmmmmm i know what your getting at,i dont think i feel ashamed,exasparated sometimes,certainly i also feel hard done by sometimes,but almost definetly pissed off!!!

Perhaps i was a right shit in a previous life,i dont know but what i do know is we got to keep on getting up and dusting our selfs off and carrying on regardless.
 

Cint

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I'm very open about my epilepsy, but I guess I'm too open about it because I wish I could have like funny phrases about it on like shirts or buttons or something but my mom told me it was a bad idea. I'm a senior in high school and yes, I do listen to my mother. But this time it was because she unfortunately had some really good points:

1. They may insult other epileptics who aren't as comfortable with it as I am (Though I feel like all these "F*** epilepsy" shirts are pretty darn insulting - I do NOT own one)
I agree with your mom. I met another mom who lost her 17 year old daughter to SUDEP and she posted this yesterday on Facebook.

Would you joke and laugh about seizures if you lost someone to a seizure? I lost my beautiful daughter, Chelsea, to a seizure in 2009. NOTHING to joke about!!! It happens every day. Educate yourself and show compassion to those dealing with Epilepsy.
Think about it. :ponder:
 
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You are right. I can laugh at myself all I want. But epilepsy is nothing to laugh at. I almost died from it. In fact I did CPR saved me. And my son has epilepsy. There is nothing funny about that. I am so sorry for your loss.
 

morgan86

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wish i had a cooler nickname. mine was "seizure" given to me behind my back by "friends". lol. they also wanted to put something in the yearbook. it went something like "maybe in the future she;ll have a REAL seizure" they apparently thought i was faking it. to say the least, i was not proud to be epileptic. didnt even know i was. the seizures went misdiagnosed thru all of high school. glad to see someone out there didnt have such a tough time
 
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Well there are a lot of us out there including my son who have a tough time. I had a nick name to, I forget it to now. It was related to my seizures. I just used it to "Inform" them what it was and became friend. Pretty soon they were sticking up for me. But sometimes I was performing and having a seizure. lol But if I saw my son do that, I would freek.
 
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Am I ashamed for having E, certainly.:cry: My (ex)wife behaved like it didn't exist. My (ex)fiance was both supportive and critical at the same time. (what else can you expect from someone that is bi-polar)

At the same time, when it comes to dealing with stupid people i.e. cable company, state/county/city government I can be a real thorn in their backside.:horse: In this case, the horse represents anyone/anything I am trying get info on and I don't up put with stalling on an issue.

Also, Despite my E, I am an avid cyclist and I do bike in heavy traffic.:evil: (http://www.specialized.com/us/en/bc/SBCBkModel.jsp?spid=21281 )

My bike looks very similar to that one. I will go as far as 60mi. in one day, sometimes.:woot:
 
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petero

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Am I ashamed for having E, certainly.:cry: My (ex)wife behaved like it didn't exist. My (ex)fiance was both supportive and critical at the same time. (what else can you expect from someone that is bi-polar)

At the same time, when it comes to dealing with stupid people i.e. cable company, state/county/city government I can be a real thorn in their backside.:horse: In this case, the horse represents anyone/anything I am trying get info on and I don't up put with stalling on an issue.

Also, Despite my E, I am an avid cyclist and I do bike in heavy traffic.:evil: (http://www.specialized.com/us/en/bc/SBCBkModel.jsp?spid=21281 )

My bike looks very similar to that one. I will go as far as 60mi. in one day, sometimes.:woot:
that is inspiring to know you are an avid biker - I have been having shame about my epilepsy also
but also I have been scoping for bikes
I'm sick of bus, rides, etc
 
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