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

[yorkie41]

Its too new for my family they thought my brain tumor surgery would end my seizure activity. My sister listens but doesn't understand. My husband doesn't understand he seems to be in denial he says "I'm borderline". My neurologist says seizure activity on my eeg and my primary care physcian said"seizure disorder"

My uncouncious seizures are once a year of I don't take medicine. My daughter saw one my husband has never seen me have one.

[yorkie41]

My diagnoses is too new for my husband or family when I tell them my sister she listens but doesn't understand its like a world she doesn't go to yet maybe I have to give her time.

My husband says "I'm borderline" how do you be a borderline seizure disorder? my primary care physcian says " abnormal eeg seizure disorder my neurologist says"seizure activity up the keepra dosage"

My family and I thought removing a small bengn brain tumor would stop my once a year trip to the er these past 3 years but the eeg says othewise.

I have a aunt on my mom's side that has adult onset epilepsy. Family kept saying she had too many drugs in the 1960's but now I'm not sure it was the drugs that caused it maybe its hereditary on my mom's side.

[Belinda5000]

MY family use to accuse me that having seizures was my way of getting attention .
my mother often said I brought on my seizures just to get attention.


Belinda

[yorkie41]

Even after the neurologist showed me the eeg and the tumor it kept going through my mind as I told my sister and brother. I just want a attention.
I had physical proof
weird its weird my brother and sister they don't understand

they listened but now I'm trying not to talk to them about it they don't understand it
that seems to be a step forward for me just stop talking to the wrong people about it for me

[jgbmartin]

My best friend spent the night last night. She knows I have E but didn't know much about it. We spent a long time talking about it and she is trying to learn more about what I go thru. It really helps me to know she is interested and wants to understand.

[Nancy]

Yorkie - When I developed epilepsy (age 46) my mother said that I simply had to get used to people acting like I was retarded because I was ........ "Anyone with epilepsy was retarded and everyone knew that."

When I was 62 the tumor was found and dear mother said that I was always doing something to get attention and she didn't have time for this. I was in and out of the hospital a couple times for all the testing and then the surgery. Poor mom said she couldn't afford a phone call or a card much less a visit.

The second surgery gets even funnier ............

[hawke86]

Nancy, just because we have epilepsy doesn't mean we're retarded. The people that call us retarded they are the retarded people not us. We're not retarded.

[Nancy]

Oh Hawke -- I knew/know that ..... but in all these years I haven't convinced mom that I'm not dreadfully retarded or removed her hideous embarrasement that she has such a "slow" child. She's horrified that I don't keep it a secret.

[RobinN]

(shaking my head in disbelief)

[joey]

my mom goes along with me cause i dont like to have every body around me in my personal buisness and i am glad my mom just goes along with it cuz i would not want her to talk about it to all her friends and telling every body around me. and i would not want her to be afraid of it either. im lucky to have a mom that i know understands and has done research but also lucky that she respects my privacy.

[Meetz1064]

I'm sorry your family think such ODD things........that's sad. But you have US now, too. My family's weird, too, so don't feel bad. They just refuse to talk about it...

[Belinda5000]

My mother and sisters wont tell me when there is a death in the family because there afraid I'll have a seizure.
I always hear it from someone else in the family months later.


Belinda

[Duvexy]

My first son and my sister are very supportive of me. My mom was very supportive but, she has deceased. The rest of my family isolate me. It is almost as if I am an observer only to be isolated.

[Shelley]

Shelley, that quote wasn't directed at you. It was something that I would likely think to myself when in the presence of someone like you described.

This crazy chick claimed to be a tomboy when she was young. She claims that her sister taught her to be a 'lady' and she has been one ever since.
She also gave a sob story one day about how her dad was a preacher, and that certain people in the congregation that needed temporary assistance got money, and she went hungry. I think she is mad at me cuz I asked that if she went hungry, how did she and her sisters have money for clothes, makeup and perfume.

[super]

I slightly different slant.
If everyone with epilepsy were seizure free, then we wouldn't have to worry what others thought. We naturally worry because when it does happens, attention is dramatically drawn to us unwantingly and in a negative way, and demonstrates to everyone around us that we are vulnerable, even if just for a short time.
My view is that in the 21st century there are many more forms of effective treatments than ever before (including drug therapy).
Number 1 priority - everyone aim for no more seizures ever again.
Number 2 - balancing act between drug therapy/side effects versus quality of life.
Number 3 - religously stick to prescibed medication and do not be afraid of getting a second (or more) professional opinion regarding treatment.
We have no control whatsoever how others perceive us. To be inward thinking we are doing a dis-service to ourselves.

[Crazy Monkey]

Where my relatives are concerned, I am on this ride on my own. No one in my family has ever offered me any thought, support or understanding regarding my epilepsy. They just make snide remarks and make me feel 'different' and isolated from everyone else. I can honestly say that not one of my relatives has ever asked me a single thing to do with my epilepsy, they just talk about me behind my back.

Today is a classic example of my caring family (sarcasm), how they were getting angry with me this morning for having so many back 2 back seizures, its like they think I should be able to control them. I can understand that it must be frustrating for them, as I can't hear them when I am unconscious and I was drifting in and out of seizures for about an hour, all they wanted was an answer to whether I wanted a cup of tea

Is it any wonder that I grew up keeping my epilepsy well and truly locked away in the closet like it is a weakness and something that I should be ashamed of. I really do think it is great how there are so many parents on this forum supporting their children, it really does make a huge difference!!!!

Sorry I didn't mean it to sound so much like a sob story, but it is just the way it is.

[Nancy]

I know what you're saying Crazy Monkey -- I understand.

[Meetz1064]

I am sorry for what you're having to go through with your family. That's just not fair.......

[joey]

My mother and sisters wont tell me when there is a death in the family because there afraid I'll have a seizure.
I always hear it from someone else in the family months later.


Belinda

For get the seizures i feel bad that you have so many deaths in your family.

[Shelley]

Unfortunately, Crazy Monkey, so many parents are like that.
I don't suppose your parents and family thinks your doing this to get attention?
Then, my classmates were of no help, as I was their favorite target for teasing and abuse.
I even had the doctor and my mom talk about me, about how bad I was for having seizures. All this for being doped up on drugs too strong for kids.