Do you think there is a stigma associated with epilepsy?

Is there a stigma associated with epilepsy?

  • Yes

    Votes: 175 84.1%

  • No

    Votes: 17 8.2%

  • Not sure

    Votes: 16 7.7%
  • Total voters
    208

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Bernard - Your wife is an inspiration. How to handle telling people is my dilema. As I can't drive for one year, I'm looking into bus transit so I can get back to one of my favorite towns - kind of an artist coloney where years ago I was chosen to be a featured reader of my writing in this particular cafe I'd like to return to and hang out. Since I've been housebound I'm looking forward to meeting new people there and wonder what they might think when they discover I take bus routes. I'm fairly outgoing myself and hope I can say "buses are my thing now because epilepsy is my thing now - can't drive for a year" I think that might be the best way to handle it otherwise I'll feel that people would be looking over my shoulder wondering why I have to bus it. I hope this does'nt sound shallow but when I see people waiting for buses (I'm not in Manhattan!) I wonder why and what's wrong with them that they don't drive. I don't want to be shunned by new people with whom I'd like to get to know. Laurie
 
With extremely high gas prices, I think we'll see a lot more riders on public transportation.

I bought a bus pass last month and will retain it to save the extremely high gas prices for my van (a monthly fill up is over $60). Right now, highways are totally congested. This just has to get better.

I take a bus to work. It's great! There's no hassle to park a long distance from the door. I get dropped off at the door. And, I can still retain a perfect driving record! I do drive, but I'm going to take the bus more frequently.

You're right about people watching those of us waiting for the bus. I had one coworker yell out of his window that I was still waiting (one bus was taken over my lunch hour, one bus was taken home).

And by the way, as we were looking at new cars, I suggested that my husband take the bus. The salesman said I was cruel and mean. That's the problem with today's society. For my husband's satisfaction, we're probably buying a car. It's too bad we all have to drive minivans with only ONE person in them. How pathetic!

I view public transportation as a more environmentally friendly lifestyle. Walking is healthy for us. In my high school, one of the top students rode a bike to school, even though he could drive a car. He was sensitive to keeping the air clean. He also researched several companies that were polluting water. If we had more leaders like him, that would be great.
 
Thanks Alivenwell

I'm thinking of the gas I'll be saving. I've been housebound for sometime. There is a cafe in another town I'd like to return to where I used to do readings.
Lots of like minded people there. Laurie
 
Hi Julie

Just wanted to say hi to a fellow Brit! I hope you enjoy this website the way I have, it's totally wicked to get a worldwide perspective on this flippin' annoying condition!

Cheers
Elaine
 
Stigma!!

There is the most horrendous ingnorance here in the UK, I've had the most ridiculous things said to me by people, A guy asked me why I din't drive, "Because I have epilepsy I told him" "Wow, you so don't look like you have epilepsy!" he said, what the Hell are we supposed to look like huh?
I have lost about eight jobs due to my seizures, and I took one company to court, this was before we had the Disabilty Discrimination Act 1995, thank God for that!
We have gotta talk to people, educate people, its National Epilepsy Week in the Uk May 18th onwards, I'm trying to get some tv and radio stuff going.
Keep well everyone, and keep smilin eh?!

Cheers
Elaine xx:clap:
 
Hi Laurie
Just wanted to say hi and hope you are ok, you say you are housebound, is it because of bad seizures? I can't drive for a year either, it used to be three years here in the UK, thank God they cut it down. I'm just waiting for a second lot of surgery, but I'm very keen to raise awareness of this damn illness we all share, I just hate people treating me like some three headed Gorgon when I mention epilepsy!
Tell me a bit about yourself if you get five minutes? I'm writing a book on my experiences of epilepsy, and it's wonderful to get other people in the world's perspective on this so common illness. I'm over in your neck of the woods next March, we fly out to New York, pick up the boat, do a Carribean Cruise, and then we have two nights in New York on the way back, I love world travel, and have always wanted to go to New York.
Hope to hear from you soon!

Cheers
Elaine x
 
Thanks Elaine - Once "I" get over it being a stigma I think I'll be able to "come out". My uncle who is 91 (very sharp) totally accepts my condition. He's wise enough to dispel the idea that I be "burned at the stake!" Earlier in his life I'm sure epilespy was a much larger stigma than today. Well a little about me...apart from recently being diagnosed as having Complex Parital Lobe Epilepsy, I've been on disability for eight years due to a sever Bi-Polar condition. I've been stabilized for eight years on several meds and have not had one manic episode- though I do miss the "high" but I know where that leads - a crash to the basement of yourself. Funny, I'm more comfortable sharing that I have Bi-Polar Disorder that sharing that I have epilepsy...I belong to a Woman's Memoir Writing Workshop where a very talented writer and very gifted director of writing guides us to put our past on paper in a creative and scholarly way. It's by no means a therapy workshop though catharsis is a byproduct. I keep on with my writing at home but am trying to figure a way to get back to workshop. Not being able to drive has been a depressing loss but NY State law says one year seizure free. Plus, I can't act out of my moral code - putting other people or myself in what could be fatal situation I think it's great that you're writing a book about your experiences with epilepsy. Do you read any books on the mechanics of writing? A good one is "Writing Well" by Donald Burns. A classic in my opinion!
Best - Laurie
 
Hi Laurie
Good to hear back from you! I can't imagine that you need to drive in New York, let alone dare to, I would be absolutely terrified at the thought of driving my little Rover Metro through the streets of downtown Manhatten, I was bad enough in Milton Keynes!!!! I guess we are saving a lot of money from not driving, but of course it would be great to get our independance back eh?

I am fascinated by Bipolar Disorder, my old buddie Mary used to suffer with it, I don't see her any more, but she used to have such bad days, how does it affect you in general, do you have good days and bad days with it like I do with my epilepsy? You say you have Temporal Lobe Epilepsy is it your right or left temporal lobe, and has anyone ever said what caused it or is it a mystery? I was a forceps delivery that burst a blood vessel on my right Temporal Lobe, so they had a look with an MRI scan amongst other things, removed it in Sept 2000, and now it's my right Hippocampus that's gotta go, I'm having a party at my house next Friday night for all my old work mates to come round, as I am so scared that when I've had my op I won't remember anyone! That is my biggest fear, because it's part of the brain that looks after the proccess of new memory, tell me about your memory, my long term memory is incredibly accurate, I can remember old school buddies from Infants and Junior School, but not what happened last week. I keep a diary every day, I fill it in in such detail, and it's great fun to go back five years and have a look at what you were doing, most people can call it to memory, but not me, that's why I look forward to getting together with my mates as they are my memory, I also take a lot of photos as that really helps me bring things to mind.

It sounds as though there is a definate stigma in the U.S with regards to epilepsy, I think if people don't like it, then they weren't worth knowing in the first place, I could have a lot worse wrong with me than the odd case of falling off the loo, talking a load of twaddle, dribbling now and again, and stripping off in public??!! most people do this on a Friday night round here after a couple of beers anyway!! I hope you have a good sense of humour? I have to just stick my finger up to epilepsy and not let it beat me!

Anyway, I have a nice bottle of Merlot in front of me that needs drinking, can you have a drink? Good to hear back from you, and I hope to hear from you again soon!

Cheers Mate

Elaine x
 
My reply

Mother "diagnosed" me at 3 months (am 55 years old now). M.D.'s concurred when I was 5 years old. M.D.'s told Mother NOT to tell me what I had...so at 12 I read my records and found out myself the hard way!!! Didn't understand what I read...just that something was "wrong" with me. Yes, I am very skeptical of other people, doctors in particular, with my E.

3tomaras
 
It has only been the past few years that I have felt comfortable talking about my epilepsy with those outside my close circle. Maybe it has something to do with the fact that they are under better control. Maybe it is because I want others to know that you can have E and still be successful. Maybe it is because I am just older and don't care what others think anymore.

However, YES the stigma still exists in many forms. Like the skeleton in the closet no one should no about.

:secret:
 
Hi Elain - Driving lesson once in Manhattan - ouch! Living on Long Island, driving a must!
RE:Bi-Polar. It is incidious...start out extatic, then euphoric, then suddenly you're God like. Basic grandiousity...when you realize you're mortal you crash like an elevator has snapped and you're in the basement of yourself. Depression. Then a medicin cocktail in the hospital to become stabilized. If you go off meds the cycle repeats.

BP Disorder is far less a fear or stigma for me as epilepsy. During episodes I've damaged my head and rotator cuff. My short term memory is lost for a few days and I fear with more episodes I'll forget my own name!

My TLE is in the left hippocampus. The hippocampal volume is half the size of the right. When I saw the MRI my heart dropped for myself. My neurologist said I could have been born with it. He asked me if I had early trauma in my life. Big YES. I'm on 600mg of Lamictal plus other meds for BP. He recently upped my Lamictal and I walk around the house loopy. If my body doesn't adjust I have to go in for blood work.

About creativity...Sylvia Plath and others...had bi-Polar. Dostoevsky and others had Epilepsy. Well, I'm pretty creative so both might expain it. So the good thing about the disorers!

I applaud you for undergoing surgery. I don't think I could handle that. And you're throwing a party for yourself...more applauds

USA stigmas. Terrible. Apart from epilepsy, sex is a no no commercialy but guns are rampant on TV shows and children's video games. I once had a poetry reading where I read my "America. Red White and Dead" Like minded people in the cafe loved it. Children are being desensitsed to violence while us adults are deprived from watching sexy racy commercials! Very prudish, here, but I don't have to tell you that.
 
yes but i like it.

makes me feel interesting when i feel ordinary. i tell people just like stace does.
 
I am not sure how this topic got so far off base but I will say yes and no.

I have had epilepsy and hydrocephalus since I was 16 months old. I have always been outgoing to the point of being, at least a tiny bit, aggressive. Not in a bad way but in a way that I will speak my piece with anyone who wants to insult me just because I have epilepsy.

Personally, I could not care less about people who ridicule simply on the basis of arrogance or ignorance. They just make me bust out laughing and that has drove some to flat out being pissed off because their insults had no bad effects on me whatsoever. :roflmao:

I have had some people blame my family for it, and that does touch a soft spot for me, and called me frankenstein because of my shunts and such but I learned to come up with better responses that just made them more mad! And made me laugh even more!

For example, when kids used to ridicule me for my hydrocephalus, and therefore my epilepsy, I would just come back and say that at least the doctor installed a genius brain.......something that the doctors should seriously consider doing to them because of their stupidity.

It always gave me a good laugh and never hurt my feelings whatsoever. And, that always gets the ridiculer down to the bone. That is always good enough for me and, to some degree, brightens up my day because of a good laugh.

It is all in how you want to take it. DON'T LET IT GET TO YOU!!! You control it all.
 
TexasTravel: I really love your 'tude. Defiance and humor usually stifle the crap out of those who are insecure enough to mock something that makes them feel superior.

They're just as vulnerable as anybody else!

I've been asked if I was retarded. I hold 2 college degrees in technical fields and I have several certifications in my profession. The dude who asked me the stupid question got a blast of a smark remark. I said something about how sorry I felt for people who could not tell if somebody was retarded. That was funny. Coworkers around us laughed. He hid in his own humility.

A defensive attitude with a sense of humor works for me.
 
Hi Alivenwell

alivenwell said:
TexasTravel: I really love your 'tude. Defiance and humor usually stifle the crap out of those who are insecure enough to mock something that makes them feel superior.

They're just as vulnerable as anybody else!

I've been asked if I was retarded. I hold 2 college degrees in technical fields and I have several certifications in my profession. The dude who asked me the stupid question got a blast of a smark remark. I said something about how sorry I felt for people who could not tell if somebody was retarded. That was funny. Coworkers around us laughed. He hid in his own humility.

A defensive attitude with a sense of humor works for me.
Click to expand...
The other night I sent an e-mail to a non epileptic and realized the end of the e-mail I made no common sense! (Was sent so there was nothing I could undo.) He's a cherished relative who knows of my condition but I don't think he knows how the aftermath of a seizure and can screw up the brain! He always brags about how smart I am - "What a brilliant writer!" Now, I can barely write a sensible e-mail. I stand to inherite a goodly amount of money from him and don't want him to think I'm "incompetent". I hope he lives for the longest time possible but apart from this concern and more importantly I don't want the quality of our frienship and communication slack! I know what you're talking about! When you're going through a lame moment it's embarassing. I think I'll say "I'm having a "Gracie Allen" moment. She was one fantastic woman. Look her up on the net if you get a chance!
Always - Laurie:brain:
 
I have a cousin who is in a similar situation as you only he has Freidrichs Ataxia. Regardless of the fact that two conditions are not the same, the situation is very close.

The guy is 2 months younger than me and we used to run around together alot. He has gotten to the point where he can barely move but he still has a hugely smart brain. One that he used to upset me with, although I think it proved how smart he really is, was when we would have a argument about a technique on the guitar or about a part of a book or whatever, he could/would just say " on (so and so) page, paragraph (so and so), (so and so) sentence says (an exact quote). And you know what? He was right 95% of the time! He shakes so bad that he cannot write also but he is still sharp as a tack.

I am definitely not an expert but from what I have seen, epilepsy may affect you physically but, most of the time, it does not affect your mental capacity. I am sure that if you just talk to him, face to face, that he will get the jest of what you are trying to say. It does not hurt to try. You might be surprised at how much confidence he has in you.
 
Hi Texas Travel

TexasTravel said:
I have a cousin who is in a similar situation as you only he has Freidrichs Ataxia. Regardless of the fact that two conditions are not the same, the situation is very close.

The guy is 2 months younger than me and we used to run around together alot. He has gotten to the point where he can barely move but he still has a hugely smart brain. One that he used to upset me with, although I think it proved how smart he really is, was when we would have a argument about a technique on the guitar or about a part of a book or whatever, he could/would just say " on (so and so) page, paragraph (so and so), (so and so) sentence says (an exact quote). And you know what? He was right 95% of the time! He shakes so bad that he cannot write also but he is still sharp as a tack.

I am definitely not an expert but from what I have seen, epilepsy may affect you physically but, most of the time, it does not affect your mental capacity. I am sure that if you just talk to him, face to face, that he will get the jest of what you are trying to say. It does not hurt to try. You might be surprised at how much confidence he has in you.
Click to expand...
What you said is comforting. Some days I'm intellectually out of it and I don't know if it's the meds or the aftermath of seizure. I always recover after a few days. But still do fear it will take a toll on my mind. I'm considered quite intellegent, especially in the creative area. I remind myself that Dostoevsky and many other creatively famous persons created works despite their epliepsy. Thanks for the encouragement! Always - Laurie
 
I just tell everyone I can about my epilepsy, I think we have to talk to people, educate people, and not be ashamed to have this oh so common condition, it's as common as insulin dependant Diabetes here in the UK, but there is definately a stigma attached to any neurological condition, this guy told me once..."You don't look as though you have epilepsy!!..." What in Gods name am I supposed to look like, but of course we all know that it can accompany Downs Syndrome, and Cerebral Palsy etc, and I think people just assume that we are all goona be on the deck every five minutes with our legs in the air, kicking and screaming, and foaming at the mouth!! I know that's why I've had problems with employment! It's just something that we have to talk about, so I wouldn't dream of hiding it, if someone doesn't like it, then to me they weren't worth knowing anyway!

Cheers all, and keep smiling!! x
 
Hi Texas Travel

Your photo of Egypt caught my eye, I'm still trying to find my way round this web site I'm such a technophobe!! Have you been there? We've been four times now, and I can honestly say it's gotta be the most wonderful country I've ever been to, I always feel so at peace there, and the people are so lovely. If you haven't been I would recommend it!

Write soon mate!

Cheers
ELaine x
 
My daughter was only diagnosed within the past month so it's difficult to say if she will deal with the stigma of Epilepsy. However, we've already dealt with so much ignorance and to me that is just as bad. A few examples:

1) The ER docs said she didn't have a tonic clonic but only a convulsion. After all, it's not a seizure if you don't lose control of your bodily fluids. What a bunch of BULL! Tons of people with E. have seizures everyday that don't include any loss of bodily functions! An ER doc ought to know at least that much about seizures! It's ridiculous!

2) A very loving Aunt told my Mom that my daughter won't EVER have children! Just because one person she knows with E. can't doesn't mean that my daughter won't be able to. This just saddened me.

3) Teachers at her school have been very slow to realize that her concentration problem is E. related as she has very frequent absence seizures. It has made her timed tests nearly impossible but instead of calling me and talking to me about her scores one teacher told her that she was going to fail the grade if she couldn't finish the timed tests correctly! This is a child with a Straight A report card! So I'm off to speak to the teachers yet again...

4) School Policy. I know that this has been talked about on another thread but a Person with E. does not need an Ambulance for every tonic clonic. It's a waste of time for the Ambulance and a huge inconvience for the person with E.

We come from a tiny town and so far the response to her has been very supportive but laced with so many ignorant statements that both my daughter and I have learned to correct and calm everyone else's E. fears.
:twocents::e:
 
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