Family/Relatives & Your Epilepsy/Seizure Disorders - What are their Attitudes?

[cazzy]

no understanding my mother was evil cow b4 epilepsy started my husband used it as his passport out of work as my carer some joke

 

[car05161967]

no understanding my mother was evil cow b4 epilepsy started my husband used it as his passport out of work as my carer some joke

Cazzy, While my (ex)wife didn't do that, the one time I had a seizure, was on a weekend, when we were in bed. She just stared at me, like she was watching a bad movie. A year after she left me, she told me that she had always wished my health problems "would just away". I divorced her two years later. I can't stand to look at her ignorant face.

 

[Shelley]

Yes, there are too many people like that.
You can't wish a birth defect to go away.
My mom was an evil cow as well.
Was shamed into believing I was the one who was evil.
My ex-husband thought he was cute when he used psychological games on me because he felt that by doing so, he could cure me.

 

[Futureghost]

Of my family Father, Mother and younger brother all have seen some epileptic activity in their lives. My brother was epileptic till age 3, my mother had several between the ages of 16 and 25 then none after that, my father has absent spells where he is not present at all. not one of them fails to treat me with sympathy and understanding. My wife has had no experience with epilepsy however she is very caring and pursuing a career in the medical industry.

I am in about the best situation in terms of family understanding that i could hope to be in.

 

[car05161967]

Of my family Father, Mother and younger brother all have seen some epileptic activity in their lives. My brother was epileptic till age 3, my mother had several between the ages of 16 and 25 then none after that, my father has absent spells where he is not present at all. not one of them fails to treat me with sympathy and understanding. My wife has had no experience with epilepsy however she is very caring and pursuing a career in the medical industry.

I am in about the best situation in terms of family understanding that i could hope to be in.

You are in a terrific situation.

 

[stilldancing_98]

I want to be independant, I want to be strong. One brother says he has never seen me as a person with a dissability. Strange. Once in a while he will send me some money. My other brother is like a father to me. I don't understand him.We all fought and argued until my father died and when I was in my coma. I have to have self reliance. Then I have more respect from my family. Then they help me more. I Think.lol

 

[Katiered]

This just popped in the the forum at the perfect time. After Easter I've been trying to figure out how to deal with my family members. They are, for the most part, wonderfully supportive. However I have a few attention seekers in my family who are using this as a way to talk about me, shove themselves in the spotlight and generally use my crummy situation to make themselves feel good.. And I don't mind some of it to a certain extent because I can just ignore it. But. I had a seizure, and was freaking out and my step sister,who's not a small lady was essentially suffocating me with a hug as I was sitting on the floor. I remember pushing her away, and apparently my boyfriend tried to outright tell her I don't want to be touched but she and my step mother sent him for the car (which pissed him off to no end.. My family keeps questioning how he deals with me, even though he's the one who's been taking care of me every day.) We left right after it was over, but I spent so much longer (hours instead of normally minutes) feeling ill, angry and scared after because of the way she acted. I know I can't just send an email and ask that no one touch me because that will be a clear slap in the face to her.

I guess I'll deal with it before the next family gathering, but I was so pissed off that she took it as an opportunity to act like the hero. And ramble about how I listened to her when she was cheating on her husband. And I'm so embarrassed because it was a freaking out crying type seizure this time, and I just know she spoke loudly and often of it when I left. Two weeks later and I'm still worked up over it. I know I should just be thankful though that I have family who are being kind, even just for their own crummy reasons! (And some who are wonderful because they're just great, caring people! I am definitely lucky, not forgetting that part too )

 

[albie187]

I selected all are understanding and compassionate. That was the closest answer, but not entirely true. All are pretty compassionate and worry about me and want to help. Some don't understand my type of seizure, they associate epilepsy with grand mals etc. Some expect me to have physical symptoms all the time, and if I feel okay I must not have seizures anymore, etc.

 

[Nick88]

Hmm... I chose the first one because its not as if they don't want to understand. They do want to understand and I think most of them think they do, but I'm sure you all know what its like. I don't want to sound like an angsty teenager but nobody really understand. I don't really expect them tobecause they can't know what its like. Anyway, I didn't want that to sound like it does. My family are all really lovely about it.

 

[Sabbo]

My husband knew that I had epilepsy when we got married, but sometimes I think he really didn't understand what could happen. At that time, I only had simple partial seizures--about 17 years ago I began having complex partials, too. There have been times when he's suggested that it's my fault that I'm having seizures, or even that I can possibly control them!

 

[Porkette]

My aunts and Uncles along with my cousin understood me and accepted me but my parents and brother put me out the door when I was 15 yrs. old and won't accept my
seizures even though I've had surgery to better myself. My aunt understood because she has MS and could relate to the neurology problems.
God Bless All of You!
Sue

 

[joey]

Everybody is cool as far as i know. But then again if someone said something negative to me i would fly off the handle.

 

[zombelina]

Oh boy, this is a complicated question for me. My mom, dad and brother don't get it, and never have. To their credit, I was never comfortable talking to them about it when I was a kid. I used to lie and say I wasn't having any seizures even though I was. I could see how much it scared my mom so I covered it up. So now when I do bring it up they become uncomfortable as well. They also don't understand that it is serious because you generally cannot "see" my seizures. Both my parents seem terrified to ever use the word seizure. But sometimes they check in about it. They might say, "so how are you feeling with the...uh...is it about the same?" My husband has a better understanding of just how much it has an effect on my life, because I am open with him about how I am feeling. The embarrassment and shame I feel talking to my family about it runs deep and will probably never go away. I don't know how much of it is my "fault" for not being more open, or theirs for not making me feel like I could be open about it.

 

[Ksanchez]

Can we add a choice of. Totally freaked out and over protective. I can't leave the house alone and when I do they only let me go to one place then right back home. I love them for taking care of me.

 

[Sabbo]

My mother is probably much more protective than my husband's attitude, which I described earlier .