Epilepsy the word

[Aicila]

Because of my schedule the last week and the fact that I have been having what I suppose could possibly be aura's for a few days now that have been increasing, it is becomming harder to 'hide' the fact that nothing is wrong at work right now. At first I was able to say I am just tired and it worked, but I'm starting to act different now, more confused, I ask people to repeat themselves a lot and I've been completely unfocused all day. There are a couple key people who know that I am waiting to basically be officially diagnosed with epilepsy so its not like no one knows. But it is getting harder and harder to avoid the questions as the day goes on. I am embarrassed about everything but I think overall I don't really mind people knowing. At least certain people. But, I can't get to the telling people part because the word epilepsy is really hard for me to say. I think I'm ok with having epilepsy, it sucks, but I have a family and I will do what I have to do. But I really don't want to be labeled as epileptic by people. Especially with the misunderstanding that comes with the word. Was/is that hard for people? Is it just the word and all the myths and misunderstandings that go along with it or is that I am just not ok with people knowing? I dunno, just sleep deprived thinking here...

 

[Nakamova]

You could tell people that you have a seizure disorder. Or even a variant of a migraine disorder. But really I think the best policy is to be frank -- explain what epilepsy is and then move on.

I understand your reluctance because the word epilepsy is still quite stigmatized. On the other hand this is a great opportunity to educate the people around you. Just make it clear that it isn't your whole identity. (If it's easier, think of it as being like having asthma, telling someone that you are asthmatic, that you have to be careful to avoid an asthma attack).

 

[RanMan]

I totally agree with Nakamova, just consider yourself as a "Person with a seizure condition" to stop all the stupid questions b/c the term "Epilepsy" carries a stigma and most of the general public are uneducated in that area and still think that you have a "MENTAL" desease.

Randy

 

[thogersonk]

The hardest part is dealing with stupid people people are so mean and cruel look on the news people being bullied because of being different I don't get it why people are like that

 

[Aicila]

It's funny how far I have come with this. I read the original post from last April and I can actually remember feeling how I did, the embarrassment and the struggle to come to terms with this condition. It hasn't been all roses and easy, but I'm ok with being me as far as epilepsy goes. I have other issues and the drugs are really hard some days, but I believe I have accepted being epileptic and I no longer feel embarrassed by it. I can explain it to people better, sometimes it's hard to explain I have just had a siezure, but I think that has more to do with the fact I have no idea what my actions were it how long I was out of it. I can finally say it is part of who I am, but by no means does it define who I am. Now to move on to the rest of my life as well as figure out how to accept the drugs. Those are still effecting me and how I act and feel.

 

[Brent]

I have a seizure alert dog with me 24x7, so it's pretty hard to be discrete about it. But, I never tell anyone I have epilepsy. I tell them I have seizures. Epilepsy is a label, whereas seizures are something I do. The word "epilepsy" implies different things to different people, and most of those things don't apply to me. I'm a guy who does lots of things - seizures are just one of them.

Similarly, I play the violin, but I wouldn't call myself a "musician". I sail, but don't call myself a "sailor". I cook, but I'm not a "chef". All of those labels pretend to say things about me that aren't accurate. Those are all things I do, not who I am.

But, here's something else I've figured out:

I've found that when people find out I have seizures the first time they see me have a seizure, it makes them perpetually uncomfortable from then on. However, I like tell people up-front, "Hey, I could have a seizure. If I do, it's no big deal, all you need to know is ..."

If I tell them that up-front and they see that this is something I deal with all the time, and it's no big deal, then that's just out of the way. They see that I'm not worried about it, so they don't worry about it, and it's immediately forgotten and we can move on. If I leave people to wonder, they imagine the worst and it makes everyone uncomfortable.

 

[Cint]

But, I never tell anyone I have epilepsy. I tell them I have seizures. Epilepsy is a label, whereas seizures are something I do. The word "epilepsy" implies different things to different people, and most of those things don't apply to me. I'm a guy who does lots of things - seizures are just one of them.

I tell people I have epilepsy. Epilepsy is a seizure disorder and I don't consider it a label. It's a medical condition and this is how I raised my children. My son had a bad case of asthma growing up, so I told him that he had a "breathing/lung problem" and mommy has "seizure/brain problem" called epilepsy. The whole neighborhood knew. Seizures are not something I do just because. IMO, if we don't tell people about epilepsy, how seizures can happen to anyone, anytime, then how in the world will the public ever know what to do if they witness a CP or a TC seizure?

I also do lots of things, and seizures are an imposition brought on by epilepsy, but I've learned to deal with it over the years.

 

[susan c]

I understand. Completely. The word epilepsy scared me. I said it again. And again. I looked in the mirror as I said it. I slowed and elongated the syllables. then i stopped using my voice and just mouthed the word. No voice, just saying the word slowly to the mirror.

Whoa!!! Epilepseee started looking like M&Ms. Really! Em In Emzzzz.

epilepseee epiepseee em in emzzz em n emzzz epilepseee M & Mzzz.


Its just a word. A word that looks rather sweet on the lips.

I smile at that.

 

[Janus]

Hi, did you see the vagina monologues ????
I have an understanding of the difficulty accepting that term. I have circumvented the stigma by being all me. Already eccentric. I just tell people now, now that I have accepted that I am not likely to ever see romance in my life again. Hey, I still make art. My ex wife can not stand what I've become, she much prefers the man i was before. At my age (43) and in 'early retirement' but not well-to-do means I am not eligible, so I finally stopped begging for mercy. Hey I am all, epileptic me! and enjoying life. And the patriarchal oligarchy, i say; Sir, god bless the state! by whoever its made, I didn't see nothin' sir, I was just getting LAID." Thank you leonard Cohen.

 

[Belinda5000]

Hi, did you see the vagina monologues ????
I have an understanding of the difficulty accepting that term. I have circumvented the stigma by being all me. Already eccentric. I just tell people now, now that I have accepted that I am not likely to ever see romance in my life again. Hey, I still make art. My ex wife can not stand what I've become, she much prefers the man i was before. At my age (43) and in 'early retirement' but not well-to-do means I am not eligible, so I finally stopped begging for mercy. Hey I am all, epileptic me! and enjoying life. And the patriarchal oligarchy, i say; Sir, god bless the state! by whoever its made, I didn't see nothin' sir, I was just getting LAID." Thank you leonard Cohen.

I am not an epileptic I am a person with a seizure disorder.
I'll tell someone I have epilepsy and if they can't handle it that's there problem.
I'm not ashamed of it why should I be? If I seize it's beyond my control.

Belinda

 

[masterjen]

I say "I have seizures", and even then only when I need to. I'm lucky as my seizures are 95% nocturnal, so the need to tell is generally not there. My closest friends know, but even with them it's "seizures" unless they ask questions. Sounds more benign, I guess.

 

[QueenieKP]

It is totally up to you what label you use.

I tell people I have epilepsy and mental health issues. I explain that epilepsy isn't a mental health issue but their is often co morbidity between the two and why that might be.

I myoclonic seizures around 30 times a day and tonic clonic every 6-8 weeks so it's likey people I know and work with will see seizure activity. For me it's useful that people are prepared and no one basis seizure first aid and when to call / not to call an ambulance and how to operate my phone tree of emergency contacts (husband works in France and can take him 2 hours to get home).
Q

 

[sjconner]

I have told my students (16 - 19 year olds) that I have epilepsy. Some know what it is and some don't. A few have said "I'm sorry." I tell them not to be. Its like me having freckles ... just part of who I am. However, I am still trying to convince myself that it is not that huge of a deal. The convincing myself is taking a lot longer than I expected.

 

[cadsgj]

I am still trying to convince myself that it is not that huge of a deal. The convincing myself is taking a lot longer than I expected.

I strongly understand what sjconner is saying here. Still, I wish I was as far along as she is but alas, I am not. Subconsciously though I am in that zone; when the seizure is coming, my inner mind takes over and I look to find an alone place. But one day I would really prefer to be as open as so many others find themselves. Maybe... onder:

Aicila, I also do not like telling anyone of having epilepsy. I do not know if it is the seizure or the word... well I do tell some people I have seizures but never do I share I have epilepsy... cept my wife and my neurologist.

 

[sjconner]

I am lucky I only have partials - a few sensory things and a jerking left arm. I was diagnosed with colon cancer and epilepsy within 6 months of each other. In order to survive I cannot define myself by any one or two of my experiences and/or health issues. I'm a mom, a Navy veteran, an epileptic, a graduate student, a cancer survivor, a teacher, a soccer player, etcetera. None of these things are who I am they just make up part of who I have become.