Offended Epileptics...

[Bee91]

I'm really not ashamed of having epilepsy...I don't care...I let the world know I have epilepsy by wearing a shirt that says "I rock" :rock:fft: on it and it has a picture of a rocking chair...The only problem is everyone thinks that it means "I am cool"...Pa-lease...It means I rock when I have a seizure

 

[super]

Hi Kate
I can understand your feelings of embarrassment when someone shows insensitivity and brings up in front of others about a past seizure. Every so often it gets brought up when you least expect it and you feel so small. What can you say, best not to reply.
I guess I have never really come to terms with the human and emotional aspects of my epilepsy even though it is reasonably well controlled with dilantin.
Sounds as though you have been through a fair bit.

Best of luck and keep well!!

 

[Jake]

saying "epileptic" to me as if I am a leper or something is the QUICKEST way to tick me off

I didn't know being a "Leper" was anything to be ashamed of.

I don't have a problem with being called Epileptic or a person with Epilepsy but I abhor the word "Fit."

 

[epileric]

don't have a problem with being called Epileptic or a person with Epilepsy but I abhor the word "Fit."

I also hate that word, the only thing that bothered me more was when someone asked me if I "do the chicken".

 

[brain]

I'm Blonde and it shows ....

They don't say the word "FITS" down here...
They used to say ....

SPELLS ...

Had a Neurologist who asked me the question:


"How often do you have SPELLS?"

:dontknow:
My mind would go blank. I didn't know what a
spells was? Finally he blurted out...

"How often do you seize?"

:dontknow:
My mind would go blank. I didn't know what a
seize was either. Then finally he asked me
out of frustration ...

"Ok, let's try this way..."
(pause)
"How often do you get these episodes?"

OH that! Now I understand.
:zacepi:

 

[epileric]

When my seizures were first discovered if it wasn't an absence seizure I'd laugh so my parents just referred to them as my "laughing spells". I always thought that was such a happy thing to call them.

 

[Birdbomb]

Sometimes it's HOW they say it.

Old Man (my term of endearment for my significant other) is not known for his discretion. Plus he speaks too loud because of a minor hearing loss, so everyone within a 1/4 mile radious can hear him ask

"Are you having a seizure?"

75% of which I am incapable of responding verbally.

Oh joy!

 

[renee97]

Kate,
I too am sorry to hear about "the ugly parent of the male gender." Maybe you should ask him if he would be so kind as to experience one of your seizures for you. My brother also has no sympathy for my situation at all. We talk on the phone once in a while but he does not want to hear about it.

All of which reminds me of two different things. I have a boyfriend who works in a Hobby Shop. Back in 2002 the owner hired me to work over the Christmas holidays. That was before I was diagnosed. When I asked R if he thought I could work there again his response was something like:
"We don't want you flopping around in the aisles like a seal." Nice guy, right?
Ironically he is nice and has provided me with many rides to appointments.

The majority of my friends are pretty calm and compassionate with my having E. The exceptions are those who have had to bear the brunt of hearing me complain about how this has destroyed so many aspects of my life, especially having a job. Once an old friend from Chicago was in Minneapolis to visit his relatives and he came and picked me up and we went to a nearby lake to just sit and talk. I jokingly told him not to get too close, that epilepsy was contagious. He knew I was trying to make light of a bad situation.

Kate, your dad also reminds me of a woman friend who related how abusive her father was to both her and her mother. I was horrified. I don't know what is wrong with people.
R97

 

[Trinity]

I'm at a loss for words and utterly disgusted with the way in which people respond to others with Epilepsy. I did have teasing at school because of my epilepsy and I had someone say I was brain damaged but honestly in her defense she wasn't trying to be mean and didn't know better. Kids can be cruel and will use anything to tease another, especially if it makes them look good or makes them popular. Adults on the other hand should no better and I have never had such a negative experience.
I don't take issue with being called Epileptic but I would mind if I were treated as if that were completely what defined me. I may tell people that I am epileptic or I may say I have Epilepsy but i've never said I have a seizure disorder and to be honest I always found it to be confusing when i've heard someone refer to it in that way (is Epilepsy the only type of seizure disorder or are there others?) I'm not very politically correct with how I talk, I just say it as it is but I don't try to be offensive.
I use the word fit when referring to a seizure but I hate it when someone says their child is having a fit and what they really mean is that the child is having a tantrum. Not only does it upset me because I am envisioning this poor child having a seizure but also because of how a seizure and a tantrum appear to be related.
One time when I was at university we watched a children's program (i'm a teacher) and it told of a story where there was a princess fall in love with a common man but she had been betrothed to a prince. She eloped with her love and when the prince found out he got drunk and had a fit. This was supposed to be a children's story aimed at 4 and 5year olds. I was utterly disgusted so I stood up and walked out. Our tutor didn't seem to even blink an eyelid that I walked out so after class I let him know what I thought. He told me that it was a Chinese legend and apparentally the prince really did get drunk and have an actual epileptic fit - um still don't know how the hell that is appropriate for 4 and 5 year olds!!!!

 

[RobinN]

Epilepsy is a recurrent seizure disorder caused by abnormal electrical discharges from brain cells, often in the cerebral cortex. It is not a distinct disease, it is a group of disorders for which recurrent seizures are the main symptom. Different forms of epilepsy are either secondary to a particular brain abnormality or neurological disorder, or are said to be "idiopathic," without any clear cause.

http://www.neurologychannel.com/seizures/index.shtml

Sometimes seizures are related to a temporary condition, such as exposure to drugs, withdrawal from certain drugs, or abnormal levels of sodium or glucose in the blood. In such cases, repeated seizures may not recur once the underlying problem is corrected.

http://www.nlm.nih.gov/medlineplus/ency/article/000694.htm


It was suggested to me once that given two people with seizures. You might say they both have epilepsy. One is treated with magnesium and their seizures disappear. The other is put on AED's. Do they both have Epilepsy?

I don't mean to confuse you by calling it a seizure disorder, however that is how I see it for my daughter. I tend to not like labels. I never had one when I was suffering from migraines (which by the way were cured with magnesium). Nor did my husband have a label when he had a heart attack. He has heart disease, but there is not a label that connects him as his disease (actually he has passed all of his tests lately).

For idiopathic seizures it is just my gut feeling that they have yet to find the reason for them. It is a shame that we aren't given a list of all known triggers.

Interesting.. I had never connected having a fit to having a tantrum until you just mentioned it. How many people we offend without even realizing it. My sincere apologies to any one I have ever offended by saying "Don't have a fit." You have taught me something this evening.

 

[Trinity]

Oh I understand - I just was confused because I wondered if a seizure disorder was a more generalised term which may have included something else other than Epilepsy. Kind of like a 'mood disorder' can refer to a number of different mental illnesses/disorders.
I understand that people use the term 'fit' in a non derogatory manner but it really does upset me - no matter how many times I hear it said my first reaction is to think that said child/person has had a seizure and that of course doesn't make me happy. What really irks me though is when people know that it upset me and they still say it anyway reminding me that it's my problem not theirs.

 

[super]

As much as there are perceptions by others of Epilepsy for which we will all react in different ways, we must NOT let others know we are affected by thoughtless comments. It takes a thick skin, otherwise we end up being the losers. I too do not like it when people loosely use the word "fit" or "seizure" in general conversation. I can't say I endear well to the word "Epilepsy" all of which bring back bad memories. It is great to share these thoughts with others.

 

[BuckeyeFan]

My first post

My first post on this site was based on this subject. Please read it if you have time. It gives you an idea of where my opinions originate.

:cheers:

It is not the term Epileptic that bothers me as much as the social stigma that goes with it. Yes, I have epilepsy and it does impact my life. HOWEVER, I think there is a lot more to me than that label (see above). No matter how wrong, those labels form other people's opinions of us.

:soap:

I do despise the term 'fit' and especially 'flopping around'. I usually try to educate the person using the term, but then again I am usually dealing with a much older crowd than Bee, Kate, etc... I do have a 280' nephew if any of you ever need him. :mrt:

I was lucky to not have started my T/Cs until I was 20 and thus avoided that horrible teen issue. My family has always been pretty supportive and I have never heard any of them make fun of me without me initiating it myself. My late father was very supportive and was always the one my wife could lean on before he passed away. My Mom has never said anything mean or degrading to me, but I do think she is embarrassed by my E. She is that way with many things.

Kate - I feel for you so much. I just can't imagine treating any of my girls that way. I was not always a good dad and joked around with my girls a lot. But I don't think I ever made fun of them for something as serious as E. Hugs to you. :e:

Maybe if we all started wearing a big bandaid on our foreheads, people would be more understanding. I want one with Linus and Snoopy on it. (get it? - the great pumpkin)

 

[wvueers]

Kate

Kate, I am very sorry about the way your dad treats you. I know alot of people have no clue what we deal with on a daily basis. But family and friends should. Everyone i know is very supportive of me. There is one thing we E's can learn from this, is how to show compassion for others. My thoughts and prayers are with you.

 

[stilldancing_98]

I have been embarrassed of being over wheight, tripping over a rock.And those little complex seizures. But never have I been embarrassed of having "epilepsy"My ex used to say I faked it for attention." Pathetic. I did fake a grand mal when I was being raped at age 18. Ignorance scared the hell out of them and they were gone.It saved my life. Its just ignorance.It won't always be that way. When my son grows up. He will be doing great. Because I'm going to donate my whole body to science. when people say things like that I blow kisses, it makes them dumbfounded. I love it........

 

[Dignan]

I guess I prefer seizure disorder to epileptic, but neither really bothers me. Although I don't like to label myself and will simply say I have seizures now and then, if I bring it up myself. I will correct people though if they call it a disease. I point out that it is a disorder, and that I am perfectly healthy.

People that make fun of it are another thing altogether. I can't believe that a father or brother would do that. If that happens around me, I simply ask, how would you like your ass handed to you by an epileptic?

I don't put up with that crap anymore.

 

[Krista2882]

Saying someone is Epileptic is a lot different from saying someone is AN Epileptic. The second is like a label. It's as if the person saying that a person is an epileptic is giving them the identity of being epileptic.
I am much more than my Epilepsy, which is why I have Epilepsy but I am not an Epileptic.
Same thing with diabetes. People can say someone is diabetic, or they can say someone is A diabetic. The second one is offensive.

 

[jgeekie]

It's all somantics. Whatever term you attach doesn't change the reality of the situation.

You can say "I suffer from epilepsy" or "I deal with epilepsy", and they mean essentially the same thing. Sure one has a certain negativity to it, and makes E sound like a real burden, but the base concept is the same. I can understand using a certain term yourself after some reflection because of a given connotation, but I find myself greatful if someone uses a term describing epilepsy, be it old or new. It shows they aren't completely ignorant of what is happening.

The different terms for seizure are a little different in my view because the substitutions that people use also have other meanings. I'm a gamer nerd, and I remember when I was about 8 my doctor asking me if I had "spells". I just looked at him and asked what he was talking about, we were here to talk about E, not the magic-user I played in my dungeons and dragons game. Call it what it is, and use the ugly term. It might hurt some feelings but it disambiguates. Nobody gets confused when you say "seizure".

Deliberate mocking...wellllll... that's another story altogether. "Sure I might do the 'chicken' from time to time, but you are fat and I come out of my seizures." (adapted Churchill)

Jay

 

[stilldancing_98]

You know, I have had seizures for 37 years now. I was proud of it as a kid and explaind it in front of the class on the first day of school,And my neurologist explained it very well to me. I don't get offended because everybody in their life has something to deal with.Epilepsy saved my life when I was18 and being raped.He put a rope to my throat, and I thought no way.This was back in '83. I dropped and faked a grand mall for a long time.Until he let go.I acted totall dead.He was nervous, then I screameed for as long and as loud as I could until the police came.But I have epilepsy and I am damn proud of it.

 

[C0urt]

i typically say i am coping with my epilepsy,
you toss your self up and down the road and rip an ear off
, eventually you find yourself coping with it the best you can
and remind yourself it could be much....much..worse.

and you continue to rock out to only music you can hear sometimes. PLAY THAT FUNKY MUSIC!!!!