Reactions to epilepsy

[carolyn]

I've also experienced various reactions to the 'event' ...

At first I wasn't telling people I had epilepsy. I would tell my close friends but I wouldn't mention that to my tutors or lecturers at uni, for example. Well, that changed when I got a tonic-clonic seizure in one of my tutes in my 1st year of university. I remember how my tutor was freaked out by it after I 'woke up' and it really made me feel bad. I talked to him later and he said that the worst thing for him was not knowing what was going on and whether I would be okay. So from that point onwards I have been telling my tutors that I am epileptic and might get a seizure while in class. I tell them what it might look like and what they should do and that ultimately I will be OK when it's all over. Most of the time the reaction is positive and not overprotective or prejudiced. However, last semester I had a pretty bad experience with one of my lecturers. I usually spared the fact I was epileptic as far as my lecturers were concerned, but last semester my seizures got so out of control that i pretty much missed 6 weeks of classes. The medical certificates I got from my campus GP all stated 'epilepsy' as reason for missing classes (well, she asked me if it was ok for her to put it there and i thought why should i hide it? it's not something i should be ashamed of....) so this lecturer learnt it this way. I noticed she behaved very nervously when I had my midsemester exam- she was constantly watching me, wanted me to sit in the first row... She kept asking if I was ok etc. Then, when it came to the final exam she called me to her office and said that she didn't feel comfortable with me sitting the exam with other people because if I got a seizure I would freak other people out. She said that I should consider the impact of how traumatic my seizures might be to other students and how important it is for them to finish their last year of undergraduate studies with no trauma... I was shocked. When I told her I felt betrayed because that was my good will to disclose my condition- she said that if I don't apply for a 'special sitting' (in a separate room apart from other students) for my exam, she would report me to the Head of School and they will make me do it. I was so angry and shocked in the same time that I actually started crying. I just didn't expect this when she said she wanted to talk to me! I ended up deferring the exam, sitting it with other students and not causing any trauma to anyone.. Even though it was just one off reaction, it made me feel really bad...

However, overall, as far as my friends are concerned it's been really good. They are understanding and helpful. I really appreciate that they don't freak out and don't make me feel like a freak of nature .

 

[Zoofemme]

As I have often said on here, the person I have the most problems with is my mother and I think it is because she just wants to make believe it isn't true. SHe can accept my Fibromyalgia and the possibility that I might have something else going on along with it but the E...no way. Yesterday was a prime example of this. No one in my family likes to go grocery shopping with me, they have consistently said that I take to long. My husband and I end up arguing and everything else and it becomes a miserable experience. I was given to believe it was because I was unorganized (all of my coupons, forgotten list,etc) and just too slow. Yesterday I asked my mother to take me in order to spare my husband the misery. We were in the store 2.5 HOURS!?!?! I was like, wth? I asked my mom what i was doing because it seemed to me that i got through the store quicker than I do when I'm with dh. I was organized, I had only the coupons I needed and my list. THere were several aisles I didn't go down at all. She turns to me and says "well, I might as well tell you...I came up on you a few times and you were just standing in front of the shelves with a blank stare on your face, like you weren't there, I just left you alone. I came back and you were still there. There was also a couple of times that you kept picking stuff up and putting it back like you couldn't decide if you wanted it or not, you'd get it eventually". Of course I lit into her about not telling me these things because they needed to be mentioned to my doctor and since I just had my appointment I was going to look like an idiot when I called her. Which of course i did. After all of these years I still don't get her denial :roll:

 

[SunshineArtist]

Totally! I had one person give me the pills line. She said "this guy I know was having fits (yes she said fits) and the doctor gave him some pills and they stopped. Why doesn't it work for you?" (implying that I was taking the wrong ones or something, who knows)

My doctor calls seizures "spells". He even corrected me when I said "seizure".
He's a good doctor but I don't want to think of epilepsy as some witches spell that has suddenly been cast on me.

 

[carolyn]

My doctor calls seizures "spells". He even corrected me when I said "seizure".
He's a good doctor but I don't want to think of epilepsy as some witches spell that has suddenly been cast on me.

My doc likes to call them 'fits', which reminds of a small kid having a temper tantrum kicking and punching the ground (but that's probably just my association because English is my second language )

Zoofemme- I am really sorry that you don't get support where you need it the most- from your own family. This must be really frustrating.

 

[Rae1889]

My doctor calls seizures "spells". He even corrected me when I said "seizure".
He's a good doctor but I don't want to think of epilepsy as some witches spell that has suddenly been cast on me.

Your doctor probably calls them spells because he hasnt diagnosed you with seizures yet. If he hasnt found a cause (or in some cases because he thinks there really is nothing wrong with you and you are either faking or this is psychological) he will call them spells. So next time your in his office and he corrects you, just ask why he corrects you. and ask what he thinks is wrong with you and the possible cause.

 

[Bee91]

"Oh my Gosh! You just stared into space for ten seconds! I need to call the ambulance! Did you take you meds today, Brandi?!" ...I say underreact :s

 

[SunshineArtist]

Your doctor probably calls them spells because he hasnt diagnosed you with seizures yet. If he hasnt found a cause (or in some cases because he thinks there really is nothing wrong with you and you are either faking or this is psychological) he will call them spells.

Well it showed up in an MRI & the EEG. I asked if a seizure was different than a spell and he said "Spell? Nooo" Lol, I figured he was just quirky.

 

[Eli]

I don't remember alot of them. A couple of times I'd "come to" and be on the floor and know I had one because I hit something on the way down. So I have a scar down the middle of my brow from riding the counter edge to the floor during one seizure.

Another time when I'd fallen and hit something on the way down with my face, the ER drs made my husband leave the room and asked me if I was a battered wife. :roflmao:

Another time I had a seizure in the shower. I woke up in the ER buttarse naked lying on a cot with wheels thing. They'd put a sheet over me but omg it was cold and the ER was busy and they left me laying there foreverrrrrrr. I do remember waking up and thinking...am I in heaven?

The worst one imho is the one I had while working at a major corp. Once it started I remember people getting all excited and the last thing I remember is seeing people peering over cubicles and gathering around to watch the "entertainment" I was offering. op: It mustve been a doozey to watch, the ambulance guys said I had a triple.

 

[iloveshelties]

I guess I've been VERY lucky... I have had people mostly respond to my license being taken away...they have all offered to drive me places, or take my daughter to work for me, go to the grocery store for me, call me often to ask me if I need anything. I consider myself fortionate.

My FAMILY on the other hand is the one that is nervous or overprotective. They call me constantly when I'm home alone ( and by that I meean my my parents call every 30 min. and my daughter texts every hour, ahd hubby checks in about 4 times a day inbetween all of THAT!),and they won't allow me to shower unless someone is outside the bathroom door. I know they are just being protective of me. They have every right I guess. I know if the shoe was on the other foot, I'd be the SAME way with them.

 

[Ghots]

I have had a lot of different reactions to my telling someone that I have a seizure disorder.

I remember a few years ago, I was 19, I was left my bottle of dilantin at my girlfriend-of-the-time's parent's house, while we left to go to dinner and a movie. About an hour into our date that night, her mother called her, freaking out about the "side effects" she read about.... apparently according to what she read online, a male who takes dilantin is incapable of... um, how do I make this family friendly.... having any sort of love life?.. which is not true! And very embarrassing to be asked that!

One ex-girlfriend would call me every night to make sure I took my meds. I can understand that one.

Another ex-girlfriend was worried that we shouldn't go out to concerts or nightclubs because she was worried the flashing lights might cause me to have a seizure. I kindly explained to her that I went on to after my first seizure and became a security manager at a concert venue and a nightclub, with no problems.

Then there were my friends who faded into the background once they heard why I was hospitalized that first time, and then the friends who I saw were/are my real friends, heard about the problem; they accepted it as just another fact of life.

Basically, some people are ignorant and some people aren't. Some people only seem ignorant because they don't understand what it means for you and they want to so they can accommodate you and continue to be a significant part of your life. I have found that it is largely about how you respond to someone's questions about your seizures.

 

[motorbill66]

I voted just right. Most of the time that's the way people have treated me. They might say something like, "That's a shame. How does it affect your life?" Sometimes they just seem uncomfortable and want to change the subject. A few have expressed sympathy and asked in a very caring way what they should do if I have a seizure. That's really touching, and I thank them for their concern.

Of course some folks may overreact, as though they've seen a zombie or a "Mental Defective" (Aren't we all in our own ways?)

I always try to explain what the disease is about because most people just never even think about it. Lucky Them!

I think that these reactions are something for which we should all be greatful. Back a ways in history people were locked away and given a bowl of gruel to eat and a pail.

Further back yet, we'd have been knocked off for being demons or at least possesed by them. These are better times, eh?

 

[BlueSkies2220]

I would rather deal with the aftermath than have to deal with everyone around me constantly thinking 'oh is she going to have a seizure today'? Like it was for me at work after I had a seizure. i could feel them whispering around me, 'theres that girl with epilepsy, stay away, you might catch it!'

I work from home now so maybe i can have my seizures in the privacy of my own home, lol. its none of their beeswax

Of course, my closest of closest friends online know about my condition. My one friend understands that my memory is shot and that he has to remind me of stuff..and i told another friend, a new friend about my condition after we had a heart to heart about her own condition, autism. I wanted her to know that i know what its like to be labeled and that it will be all right, we can stick together, i will be there for her anytime she wants to chat.

 

[Superman1988]

I get all kinds of reactions...

#1 most common is: "What do I do if you have one?" and "Do you know if you are going to have one?"

#2 is: "You don't look like you would have epilepsy"

#3 (and my most hated): "Just don't have one around me..."

 

[C0urt]

I would rather deal with the aftermath than have to deal with everyone around me constantly thinking 'oh is she going to have a seizure today'? Like it was for me at work after I had a seizure. i could feel them whispering around me, 'theres that girl with epilepsy, stay away, you might catch it!'

+1

and of course several of my friends and the gf, know what to do in case happens. It is nice to know there are people you can trust.

 

[seizingbeauty]

[#3 (and my most hated): "Just don't have one around me..."[/QUOTE]


Just got new co-worker who said the same thing. She said that if I have a seizure in front of her she's gonna need to take a leave of absences due to stress. It wasn't exactly a joke either...

 

[Wally]

Some folks are just idiots................

 

[TempusFugit]

I concur Seizing Beauty!

When I informed friends they were fantastic (on the most part - a few of them dropped away, but heh - that's just ignorance or fear). Immediate reactions were ones of sympathy (wasn't comfortable with that) and the "what can I do if you have a seizure?". Flippant comments have also been uttered by so called friends "Can I call you an e.p.i?" or "I better not take you to a nightclub as you will probably win the dancing competition". Naturally, I don't consider these to be true friends

My family are perhaps the ones who are more overly protective. My mum calls quite frequently and my little boy always makes sure I take my tablets. My brothers and sisters are again extremely protective and if I ever have any worries (which is quite frequent of late) they will glady help me out (even though I try to deal with things myself).

My partner is fantastic (thankfully). When I first informed him that I have epilepsy, straightaway he asked what he should do and what kind of seizures I had. He wasn't fazed at all. When I had a tonic clonic and ended up in ITU he was a pillar of strength and whilst many would probably walk away at that point, he was resolute and determined to be there and care for me, but not in a domineering way. He accepts me for who I am and has never made jokes about my condition.

I therefore voted 'about right' in most situations, but of course there are always a minority who will try and upset the apple cart.

 

[Krista2882]

Most people don't know. My family and a bunch of family friends know because my mom called them all and told them!! I was soooo mad at her at the time. I wasn't even going to tell my best friend, but then my mom blabbed about taking my meds in front of her, so of course then she asked me what I was taking pills for and I had to tell her.
I tend to keep things to myself a lot, and I don't think stuff like that is anyone else's business, and I guess I was also kind of embarrassed about it at first because I know how many misconceptions I had about Epilepsy before I knew I had it, so I knew what other people must think about it.
I still don't tell most people. I went to school and lived with a bunch of other girls, and my first two roommates didn't know I have E. Then one of my other roommates was nosy and asked me why I took so many pills. Then another girl I lived with... I forgot why I told her... I remember I wasn't so secretive about it with her for some reason. The first roommate who knew has a niece with Epilepsy, so she wasn't weird about it at all, then the other girl I told is a nurse, so she's familiar with it.
Then last week I stayed over at a friends' house and they have a teenage daughter. She saw me taking my meds, and she asked why, so I told her Epilepsy, and she was just like, "Oh." And didn't really have much of a reaction at all.

 

[car05161967]

Apart from my family, I have become very selective about who I tell. Because I always get a negative response from people outside my family. Almost to the point that people react to my having E, like it was a contagious disease.