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Fedup

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I was talking to a distant relation and a friend of his, my relation knew about me being an epileptic but his friend did not, anyway he brought up the topic of his sister and how she had just been diagnosed with epilepsy and said about the poor thing and her brain, what she could not do and so on. I sat there listening until he was finished. I was angry with him for what he said, so I launched into an attack on him, this was unfair and I stopped myself in time and spoke to him, some of the things that came up were about children and driving, jobs and so on and he was amazed at what I thought and twice as amazed when I told him I was an epileptic. Then my relation turned to him and said “I bet you feel sorry for yourself now.” This is basically what I think am I right or wrong.

There are a lot of, well to be polite misunderstandings about people with epilepsy. One of the first you will hear is about how slow a child will be at school, however this is not true. A child can be “slow at school” for a lot of reasons none of which we have any control over but epilepsy is not a reason, it may play a small part. Not being able to work is one I like, it does not apply in these days but it did. It was assumed that if you had epilepsy not alone was your intelligence limited but your ability to get up and work was an unattainable expectation. Your ability for concentration or communication with others was limited and better not to be tested as the consequences did not bear thinking about. One thing often proposed was leave them on there own, not to mix with “normal” children.

Then you had the physc ward which was suggested, I was lucky the offer was never accepted. Of course the treatment most favoured was electric shock which I am sorry to say happened too many. Then you had driving, something frowned upon and even to this day is something that no epileptic should be allowed do, the obvious reason for this is safety, the safety of others more than the safety of the person. Understandable no one likes the thought of injuring another person and God forbid take a life. But what about the injury to the person this happened to or there life. Then there is sport, this is a definite no as well because the head injury caused could be irreversible, nothing about the person who was injured.

The way I see it is a lot simpler. A lot of the most famous people had epilepsy. The people who have epilepsy never run around shouting, look I did this. At times I think doctors look at an epileptic nearly the same as a trained monkey. The thing is the one or two things mentioned which may apply to certain epileptics, depending on which type of epilepsy you have may not allow you to work or drive. The part about intelligence would depend on how ability, common sense and intelligence usually of the “ordinary person eg doctor.” The jobs which are commanded by epileptics are of ability just like “the ordinary person.” So for any person to qualify for any job first they must have ability to do the job in the first place.

The thing about sport is anybody with epilepsy knows what they cannot do eg boxing but there are a lot of sports and I am sure there is something one can do, why not. So is there a difference between the “normal person” and some one with epilepsy. No there is not, everybody has a health issue and we all know what we can or cannot do, a diabetic needs to cheek sugar content and so on. Epileptics in general are more intelligent, better informed, better able to find a solution to a problem. I may be biased, actually I am because I am tired of listening to people telling me what an epileptic can and cannot do, there poor ability and so on. The ones I see with the least ability are these people and doctors. Then they ask you to agree with what they say. The best part is when I tell them at the end that I am epileptic.
 
i never tell anyone i epileptic i always say i have epilepsy,people with e are proberly the safest people around because they know what they got an taking steps to live with it...i also say if do eeg on every one walking down the street be very possible over half could have abnormal readings...
also tell them some of the greatest leaders in history had e
 
This makes me upset
When a Dr. or someone say "you don't look like you have E."

I would just like to know what they think someone with E looks like.

I have this said to more than once, and for the life of me, I don't what to say back to them. I try not to hurt their feelings.
 
I will tell people I have epilepsy. I haven't really had any negative reactions yet, other than people being overly concerned (my aunt saying I shouldn't go running by myself, for example). I graduated from a top university, I'm working on my masters degree, I run marathons and can outrun a lot of the guys here in the military (or in general), I did well in my job (before I got stuck in "purgatory" but that should be over soon and I'll be back working my regular job, though the military is a bit different from a regular job) and I think I have a lot of good things going for me; therefore, if the fact that I have epilepsy affects people's opinions then screw them - to be blunt.

I think some of the stigma also comes from the fact that you do have a lot of people who are slower or have other disorders who ALSO have epilepsy; however, the epilepsy does not CAUSE those problems, but so many people are uninformed. Hence why I don't mind telling people I have epilepsy - it helps destroy the image that all epileptics are unintelligent, or incapable of taking care of themselves. Any educated person should know the difference between a correlation and a cause/effect. Yes, there may be a higher correlation of people with epilepsy who have other disorders, but the epilepsy didn't CAUSE these issues. Maybe memory issues, but that has nothing to do with intelligence.

And like you said, Fedup, everyone has their health issues. And unlike SOME problems, epilepsy can't really be avoided. Type 2 diabetes, problems caused by poor eating habits, problems caused by smoking - those can all be avoided for the most part with healthier habits. People with epilepsy don't have that luxury, and for the most part, the development of epilepsy is out of our control. Some people can control their epilepsy with only life changes, and some can do things to help control their symptoms (sleeping more, for example), but for the most part, it's something that is beyond a person's control.

I was talking to one of my close friends who is in medical school about how nobody is really 100% healthy past their teenage years/early twenties... And even then, there are lots of younger folks with problems. She agreed it's true, she used herself as an example - she has a few problems of her own and she's about to be a doctor. I'm trying to convince her to go into neurology since she hasn't picked a specialty yet :) She'll actually understand her patients better than most doctors if one of her best friends also has epilepsy!

Okay, off my soap box now :)
 
*Warning - spoiler alert for My Sister's Keeper*



Also, if anyone has seen My Sister's Keeper, the very intelligent lawyer has epilepsy and has a seizure right after winning his case. I think it's kind of cool that they put that in there... It shows that someone can have epilepsy and still be perfectly functional.
 
Hi

You know I recall very clearly as achild sitting in the neurologists office with about 5-6 doctors poking and prodding and asking lotsofquestions, not many people had tuberose sclerosis complex then and not a lot was known about it then. They were absolutely flabbergasted that " someone with TSC" could talk with them let alone express the symptoms and lifestyle of someone with epilepsy.

And then of course there is the attempt at a discreet step away from the person with e, I mean you can see that they almost shrink away as if they expect the bubonic plague to overcome them any time.....GRRR god it gets me mad!!!

If anyone is in doubt of the tenacity and strength of a epilepsy sufferer , read the book " tenacious, by Marion clignet with Benjamin c hovey". She truly is an inspiration to not let the epilepsy own you but for you to try and reach past it to achieve your goals :)

Hehe thanks for the rant that felt good :D
 
Well said, Fedup. I have made conscious decision to be completely open about the fact my daughter has epilepsy. Firstly, of course, I don't want her to grow up thinking she should keep it hidden of feel ashamed about it.

Secondly, I think she has a great opportunity to, in a small way, influence the way people perceive epilepsy. She does well at school and beautiful, talented and vibrant. She plays in the school orchestra, sings in the choir, helps to coach the junior choir and is part of a small singing group that has started to receive invitations to perform at weddings etc. She has performed at two Shakespeare festivals and in a school production of Grease. She also has a part-time job.

I hope there are people who look at her and think ... Wow! She has epilepsy but she is so normal!
 
I think she has a great opportunity to, in a small way, influence the way people perceive epilepsy.
Yes, this is key. It's great when we can be ambassadors for epilepsy or other stigmatized/misunderstood illnesses. Opening minds wherever we go...
 
She does well at school and beautiful, talented and vibrant. She plays in the school orchestra, sings in the choir, helps to coach the junior choir and is part of a small singing group that has started to receive invitations to perform at weddings etc. She has performed at two Shakespeare festivals and in a school production of Grease. She also has a part-time job.

Jane, just curious, what type of epilepsy does your daughter I have. I have left temporal lobe epilepsy, and music has always been my strong point - possibly strongest. I have played the flute since I was nine and am also a singer, and both came very naturally to me - I excelled there more so than in other ways. That and writing (I've always loved writing).

It seems there is a link between epilepsy, or maybe certain types, and creativity/expression.
 
Hi RunningGirl,

The flute is a beautiful instrument. Rosie's epilepsy is generalised so not sure if that rules her out lol? She is definitely more musical than the rest of the family, except perhaps her dad. She started out playing violin but changed to viola a couple of years ago and also taught herself guitar off the internet. She loves to write too - and is also good at art.

I envy you both. I'm rubbish! x
 
Hi RunningGirl,

The flute is a beautiful instrument. Rosie's epilepsy is generalised so not sure if that rules her out lol? She is definitely more musical than the rest of the family, except perhaps her dad. She started out playing violin but changed to viola a couple of years ago and also taught herself guitar off the internet. She loves to write too - and is also good at art.

I envy you both. I'm rubbish! x

Well who knows then :) It may have nothing to do with the type (or maybe I could be completely wrong about a link between epilepsy and creative types!) She sounds very talented though! I'm actually not very good at art, lol. I consider music and writing my arts :)
 
I don't tell people until I really get close enough to trust them. It's not a thing I want people to know. It's not out of shame, but rather the series of questions I get from people who hear about this. I don't want to answer questions complete strangers will ask because they don't know me well enough to know what responses or questions will set me off.
 
Hey guys I had to go to A&E a couple of days ago and I was astonished to have a doc tell me that I could "think my way out of my epilepsy". Also one day my uncle was a pure wally to me and asked had I "Finished falling down yet?", I think he thought he was being clever or something I was appauled....but to be honest it's more the medication that has started to hold me back, since I started on a new medication (phenytoin) I've started to feel constantly sick, dizzy, numbness in my hands, feet and face (and because of this I can't play my violin) basically I feel like I'm drunk all the time or something, so it's not so much the E itself but the side effects of the medication.
 
I was holding a conversation once and it came up with a coworker that I had epilepsy.

The next week she asked me if I was still having problems "falling asleep all the time."

People are funny.
 
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