Do you speak up about epilepsy?
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UPDATED: Thu, 11/05/2009 - 10:04am
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kyrissa
Embarrassed
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I know that I don't need to feel this way, but I am embarrassed to admit to others that I have seizures. I am concerned that they will "freak out" like most of society does with epilepsy due to thier lack of control on situations. I have also been turned away from others because of my diagnosis.
I am 30 years old, have no job, and living with mommy and daddy. I do have a degree in nursing, but because my seizures have increased, my memory has declined, so nursing is no longer an option. If my memory didn't stink so bad, I might be able to do something, but I can barely remember anything.
My faith is strong, but I struggle with why God has given me this "thorn in my side" (some believe that Paul the apostle struggled with epilepsy)
Does anyone else feel as ashamed or embarrassed as I do?
By kyrissa at Thu, 11/05/2009 - 10:04am | 144 views | 13 comments
Recent Comments on this Discussion
I understand completely about the embarrassed part... It's not so much about me being embarrassed as it is annoying. To waking up on the floor of walmart surrounded by people saying "HELP IS ON THE WAY" and of course when you come out of a seizure you're so disoriented you can't get the word "I'm epileptic, Chill out!" out of your mouth. I often get tired of explaining it to other people, they seem to want to study me like I'm wikepedia or something. Its more annoying for me I guess than feeling embarrased. This site is helping me tremendously on how to deal with issues though, I realize that a third of the world is going through the same thing I'm going through or maybe even worse.
I was seizure free for a long time, now I'm 31 years old, I have a son with autism, and out of no where my seizure disorder decided to show it's ugly face again. Now I'm afraid sometimes to walk out in public fearing that something might happen to me. Even if others see it as no big deal, it's still something thats not on your things to do for the day list. If I can avoid it, I will. More power to the people on here that enjoy long walks on the beach and excercising four hours a day, but I had a seizure in the gym one day... That sucked, ever since then I've been scared of excercising.
One thing that is helping me get to the bottom of this, is to evaluate myself everyday,( If I feel one coming on, what was I doing?) Things like that. And last but not least, BLOW UP YOUR DOCTOR'S PHONE!!! That has been the only way I seem to be able to get his attention, if something changes, let him know. I would tell you not to let it get you down, but I feel your pain.
Good luck to you and GOD Bless.
Kyrissa, forgive my directness, but my recommendation -- if you can stomach it -- is to adopt a "f*ck 'em" attitude and do your best to develop a hard shell. Living well, someone said, is the best revenge. So please, live well!
I assume you're American from your writing, and I have to say that I find the majority of the American public's attitude to epilepsy decidedly medieval compared to what you'd find in, say, Europe. Just my opinion.
Of course, there are many delightfully enlightened folks in this country, but there is also a large goup of ignorant, frightened people too. Like some things these people don't understand and are frightened of, epilepsy becomes something dark, something to avoid.
If fear and ignorance are the opposite of intellectual curiosity and understanding then I guess we should ask ourselves: who are we hanging out with? The frightened-and-ignorant, or the open-minded who are willing to understand and learn. I know which group I prefer.
Epilepsy has yet to find its feet in public relations terms and gain popular support as a cause. Breast cancer is popular but to be fair, it's an easier sell in my opinion. Heck, everyone likes breasts and nobody wants them to go away. And that's great. I no more want anyone to suffer breast cancer than you do.
But unfortunately our disease hasn't yet benefited from the high visibility, showtime and public empathy such as the smart, concerned breast cancer people have created for their worthy cause. And epilepsy's a harder sell. When "blue", "jerking" and "lightly foaming at the mouth" are your key characteristics, no public relations person's going to suggest a billboard in times square to sell your case... ;-)
Off topic for a sec -- I wouldn't think twice about marrying somebody who had epilepsy. Being devil's advocate momentarily, isn't it the only way there can be true understanding of this thing between two people?
So I would say, wear it loud and proud, Kyrissa. You know what's up with your brain, and I personally don't think that Jesus or whomever picked you out to suffer. I think you were dealt a less-than-perfect hand of cards in a chaotic universe for reasons not yet understood. If your beliefs help you, though, then great.
But don't forget to be amazed just to be here -- it was only 300 years ago that so-called men of god would be killing you and I because of our disease in this very country, and it's still going on today in many countries throughout Africa (and probably elsewhere).
By the way, the people that get freaked out by your epilepsy are, I think you will find, more likely far greater freaks than you.
Take what you want. Disregard the rest.
All good wishes, NM
PS. Paul arguably stuck a thorn in many people's sides when he decided that only men could run his church... maybe he had a bad experience with a woman jamming a sandy piece of footwear into his mouth during a tonic-clonic or something. Who knows?
dear kyrissa;
i know that its hard to deal with epilepsey ... i was in your situation ... actually some how i think a part of me still feeling such like you but there is nothing to do except for asking god to help us or maybe .. i wish we will be cured one day .... but all in all till this day comes ... its not our fault that pepole -who think epileptic pepole are crazy- are crazy themselves. even though i wish its not too late to give you this idea but for my self i avoided telling every one about my epilepsy its really easier ... remeber you are a good healthy person epilepsey is nothing compared to other things . and take my advice don't you ever think about the pepole ideas about you trust in your self be proud of your self ... keep breathing and thank god that you are still breathing don't waste your time with the sick ideas of crazy pepole don't think about anything that might make you feel bad
take care and best wishes
Hi Kyrissa,
Don't feel ashame about your problem, we all feel the same way. Even myself get mad when I
have one of my attacks and some tell me that I'm faking it, even by a doctor. So don't feel bad, this is
the right place to be to talk to someone about any problem your seizures problem. I'm here if you need
to talk too. Just old Worry Man, lol
I know how you feel about the embarrassment. Only the people (besides my immediate family) who are close to me or have seen me in a seizure knows I'm epileptic. I don't tell anyone I'm epileptic unless I have to like the time i had one in a hall way in school and ended up on the floor and a nice girl found me and helped me call one of my friends to come help me. And I don't want to tell people i'm epileptic for fear and worry of how they would react towards me once they find out. i've lost some friends because of it already. And I find that some people when they find out or see me in one, they would stare at me as though I'm some kind of freak or like I would fall and have a seizure at any second. And its not nice when I know some people talk behind my back about my seizures when i'm not around or when they think i can't hear themwhen I'm partially awake after a seizure. So, I know how you feel about the embarrassment.
~sophs
Hi Sophs64833,
One of the most famous "soliloquies" by a person, in front of a another person having a partial complex seizure, is in Othello, Act 4, Scene 1, lines 42-60 where Iago emotionally rouses Othello into an epileptic seizure, then brags about it in his soliliquy, until Othello starts to regain consciousness, and Iago starts faking concern for Othello's well-being:
Iago:_______Work on,
____________My medicine, work! Thus credulous
______________fools are caught;
____________And many worthy and chaste dames even thus,
____________All guiltless, meet reproach. -- What, ho! My
_______________lord!
____________My lord, I say! Othello!
I've documented two encounters with Iago's clones this year, both while I was trying to orally record my time/geographic locations with my gps unit. Then, after the fact, they are so sweeeeettt!!! And when they realize you know what they mouthed, they'll try to hide behind as much trouble as they can create. The one that is a pseudo-medical professional also had to have left a track of records in creating the trouble, and I'm wondering if federal discovery rules over-ride state law "protecting" trouble-makers in filing false reports to Adult Protection Services.
Tadzio
Hi
I have a seizure every now and then (grand mal). I don't really care to much about what other people think. I don't look that great these days either. My one eye is closed and have the side of my head is pushed in a bit. There is a bit I could be concerned about. But why should I really upset myself that much about. I live for life. I am as happy as I could be. I went through so much for the past 4.5 years. I am so happy to be alive. What other people think is on them. Not on me.
So I can't work anymore. I was a computer worker for about 20 years (database adminstrater last 10). My memory is pretty bad. Just peoples names, movies I watched, things I did, etc. are not there from day to day. My past is gone. Friends bring things up and sometimes it comes back which is nice. But, you know, if it doesn't, I can't do anything about it. So if I get upset about these things, I am the one who suffers. There is no more need in my life to suffer anymore. We need to live for today. Just today and only today. There is no guarantee for tomorrow and we can't do anything about what happened yesterday.
One thing we can do on a regular basis is to be happy with/about our family and friends we have and stay with us. Thats it. And sometimes we will get new friends. We will have to try to continue and try new things. It is our thoughts about what to do and try to do. We can't do everything, but we can try alot.
And as far as work is concerned, many thoughts have to come into our head of what things we can to. And then try these things. What work that seizure won't hurt US when/if it happens there. Our employer would have to know about all these items. If they didn't want to hire us on this. Oh well. Other type of work would be on the computer at home. Also sales of items at home. Sales at items at stores. Cooking in the kitchen with other cooks. There are other types of work, This is all your thoughts. I do wish you the best.
Jim
Kyrissa,
I have had Epilepsy since 06, changing meds. and trying to cope with stumbling and sleeping I have decided not to tell anyone of my medical problems. Had a job and quit because of the new disease that makes me odd to the rest of the world. I live in a small town and most of the people here do not understand what a toll it is to be normal in public. I have 8 medical professionals in my family and they know of my condition and seem to look for the shake, the stumbling or the slur of words that come out of my mouth. It's hard to see how my family looks at me (even though they know what epilepsy is about). I feel less of a person because someone is looking at me different, like i'm being judged. I'm still trying to get used to how I am viewed as a person with epilepsy.
I think it's how epilepsy is viewed in your world. Your body your decision.
God to me is a big big question right now.
Hi kyrissa,
I have lifetime Temporal Lobe Epilepsy (TLE), and many of my minor partial seizures are just "feelings." When these feelings are intense and basically visceral, it's moderately easy for me to ascribe the sensations to epileptic seizures, with the pseudo-emotional labels overlapping and confounding the pseudo-cognitive labels of a rather vague ranges of extremes. When the feelings are not so intense, and not entirely visceral, social conditioning overlaps, and confounds, the differences between what has been learned versus what is directly seizure related.
The effects of epilepsy on my verbal behaviour in job interviews never received any accommodations, even when I requested it well beforehand. The first result of informing potential employers of my epilepsy was a very large drop in my rate of job interviews, so it is best not to mention epilepsy beforehand. The feeling I have about the results of revealing epilepsy is difficult to label. Ashamed and embarrassed don't seem to be the best words to describe my feelings about revealing epilepsy, or epilepsy becoming known ("admit" epilepsy seems to be the wrong word too! LOL).
Looking in my 1947 "Funk & Wagnalls Standard Handbook of Synonyms, Antonyms, & Prepositions" by James C. Fernald, "embarrass" is listed, along with "hinder," and "involved." Under "embarrass" are the words abash, bewilder, chagrin, confound, confuse, discomfit, discompose, disconcert, dishearten, fluster, hamper, hinder, humble, humiliate, impede, mortify, overawe, rattle, and shame. "Hinder" has synonyms that more closely match my legal feelings about how my epilepsy influenced the likelihood of equal treatment in job interviews, such as block, clog, deter, embarrass, impede, obstruct, stop, thwart, etc. "Involve" has synonyms that seem to describe the "stickiness" of prejudices involving epilepsy.
Most of the discrimination lawsuits about epilepsy that I was involved in were in the mid-1980's to mid-1990's. While in informal social situations, adverse and prejudicial responses to epilepsy can be met with many alternate responses, adverse and prejudicial responses from federal judges have less leeway (i.e., it's dangerous to tell a federal judge where to go, or to shove it, or to illustrate his/her biased stupidity, or to simply walk away). I did get the chance to steam a few prejudicial federal Adminstrative Law Judges. They all made assumptions that anybody who claimed discrimination necessarily was of lower skills and abilities, especially when epilepsy was involved; my having the best scores on the job examinations confounded their reasonings, and their inane bigotry was somewhat embarrassing to be the least bit involved with. When the EEOC told me I was simply disgruntled because I wasn't amongst the top three on a job certificate, when in fact I was on the top of the certificate, I did get the chance to tell Clarence Thomas that his commission lacked the ability to count to three without prejudice whenever epilepsy was mentioned. Such things may be embarrassing, but all the songs with the Pollyanna singing "A smile will make the epilepsy go away!" deserve the response of where to shove the prejudicial nonsense.
Tadzio
You go, Tadzio! Love it!!! LOL :)
--sparker
I can understand your discomfort, especially considering that so few people know much of anything about epilepsy, and have no ideas there is such a variety of seizures, symptoms of seizures, etc. For example, I only told a few key people at my office, but otherwise nobody knows, because that to me is my private business. I don't think people would judge me for it or anything, but I just prefer to keep my private life - private!
Hang in there, you are not alone - don't forget that! (Since you say you have faith, you should search You Tube for the video/song "Savior Please" by Josh Wilson, I think you will find strength in it, it's a lovely song. :)
Take care.
-- sparker
Dear kyrissa,
Personally, I don't have time to feel 'embarassed' about having epilepsy, and I seriously don't think it's in my best interests to do so. I have always been quite open about it. Not just for the sake of educating people about it, but more importantly, people 'freaking out' when you tell them it is a problem of yours will be much less than them freaking out when you have a seizure in front of them and they don't know what the problem is.
I let everyone I know that I have epilepsy on the off chance that they are there when I actually do have a seizure. Think about it, when you do have a seizure would you rather them be jumping around and giving you mouth to mouth or pounding your chest in the mistaken view that they would be saving you from a heart attack? Or would you prefer that they handle it calmly and wait for you to come to, and can remember your name, so they can tell you to just go home and go to bed.
People who turn away from you on knowing you have epilepsy are just as dopey as people who are predjudiced against people with ingrown toenails or flat feet.
Talk to your docs. If your seizures have increased or your memory has gone to h*ll, you may want to address a change in meds, or at least the dosage, of the one you're on.
In answer to your last question. Not me. Yes, there are people here who do, but they tend to be new to the subject.
Matt
When you tell others make sure they understand that you don't mind answering ?s or clarifing information about epilepsy. make it clear that having epilepsy is NOT a big deal. make it very clear that epilepsy is NOT who you are. i have used these suggestions through school and still use them. they tend to neutralize peoples fears and put them at ease with the fact that you have epilepsy.
- elizabeth