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

[Stacy]

I have learned that people are the same wherever you go. It's how yo present the problem and how you deal with it that makes them feel better about you. There is nothing that I won't answer honestly. I've made some decisions that I would have made otherwise, but at the time I did the best I could with what I had. This Epilepsy is not your fault. Stand up tall and look 'em in the eye. Then say, "Yes. I have Epilepsy." As long as you are trying to fix it, then no one has any right to treat you like "the Devil's child". You can tell your Dad to wake up and get into the 21st century! Seizures were considered evil by the Egyptians,the Romans, and ancient African and Austrailian tribes. Depending on where you went, seizures were also considered "Holy".

[keyna]

my close family mom, brother very understanding, my dad I don't really see,weonly , he's uncomfortable arounnd me, talk on the phone. At first my extended family pretended nothing was wrong, now they are very supportive. Even my teenage cousins who love to act like there is never anything wrong ever.

[Shelley]

I have learned that people are the same wherever you go. It's how you present the problem and how you deal with it that makes them feel better about you. There is nothing that I won't answer honestly. I've made some decisions that I would have made otherwise, but at the time I did the best I could with what I had. This Epilepsy is not your fault. Stand up tall and look 'em in the eye. Then say, "Yes. I have Epilepsy." As long as you are trying to fix it, then no one has any right to treat you like "the Devil's child". You can tell your Dad to wake up and get into the 21st century! Seizures were considered evil by the Egyptians, the Romans, and ancient African and Austrailian tribes. Depending on where you went, seizures were also considered "Holy".

Babylonian myth also regards seizures as evil, and that made it into the bible.
Its hard undoing years of stigma. It's hard undoing shyness. But I keep trying.

[TexasTravel]

I am with Axa and Halycon.
Although I have had my hydrocephalus/epilepsy since I was 16 months old, my mom is still mrs. panic like the world is about to end. She talks to my wife behind my back trying to tell her all kinds of secrets about my incidents with seizures as I was growing up, etc., etc.

My wife knows more about my feelings and what has REALLY happened to me than my mother ever will and she cannot handle that. My mother has tried to make me go to a psychologist because SHE did not understand what was going on! I will give some advise ..... parents, especially mothers, DO NOT BLAME YOURE KIDS IN ANY WAY FORM OR FASHION OR ANYTHING THAT CAN BE TAKEN AS SUCH!!! Some parents may not realize what is going on but even little things can affect how youre child may feel about themselves. I finally grew up and toughened up about it. Now, and my mother gets highly pissed, that when she starts acting like a fool I just tell her to get out of my house and that I will not put up with that kind of attitude.

It took me awhile to get back to reality after all of the attempted convincing, by my mother, that I could not exist without her hovering over me all of the time trying to control me and talk trash to people that I know. In fact, those people who she was talking trash with would come right back to me or call me and tell me everything she was saying.

My dad, he just pretty much ignored everything which, in a sense, was good because he treated me with full respect without any kind of disregard of my situation. When I grew up, I asked him why he did that and really came to realize that he really made me as tough as I am by not trying convince me that I was less that anyone else.

My brother.....he is a hotshot and pretty much believes that noone will ever live up to him, especially me and my condition.

It has made me above it all and I just laugh at what fools people are when they act like immature children and the such.

[Shelley]

My parents were the same way. Mom, the drama queen and dad never had anything to say and was 'absent' a lot. One sister is victim/martyr like my mom, and wants to stiffle me, the other tells me to just pray and everything will be ok.

[skillefer]

My mom was a little over protective... But I think that's a natural instinct for moms. My dad was fantastic and relaxed. My hubby and his family have been phenomenal. My brothers...I think I scared them a little..but it was a fear based in love and concern. We're good now. I think all my relatives know, and it's never really been an issue. And my friends, well, they're all great. What can I say? I'm truly blessed.

[Joe]

Only have my mum and dad, who are both supportive but also a bit in denial (hard for them though, my 2 youngest brothers died young, and the one 1 yr younger than me died aged 20 from MD - think they find it hard to cope with thius as an idea even though E is not fatal).

Friends are harder to define - most accept it, but in a kind of 'ignore it' way - they don't like to acknowledge it, though they have not left me aside. I have one friend and she is supportive and concerned.

[Zara]

You make choosing hard the way you answer those questions......

There are very few people who understand or believe me for who I am. Most of that is probably my fault for nevcer speaking of it. That was my job was to not talk about it. Well, now I don't care anymore. I am dying and it just gets worse. I didn't refill my prescription and have stopped smoking my pot to keep me from having seizures.

l8,

Zap

[angel]

Zara,

go pick up your meds.. I dont know you, I know this but we all care for one another on this forum!

((((((((love))))))

angel

[Nancy]

Zara - this is one place you are free to talk all you want. Please do. OK?

[Bernard]

I am dying and it just gets worse. I didn't refill my prescription and have stopped smoking my pot to keep me from having seizures.

Were you able to get the EEG neurofeedback going with that practitioner you had identified?

[skillefer]

Zara, don't give up. Go get your meds, and if it really helped you, go smoke. But don't give up. I know I'm relatively new, and that we've never really talked, but seriously, you know that we are here for you. You aren't alone. Sometimes life seems to give us a bad hand, and it really just...well..sucks. But that's when we reach out to others (like those of us here) for support. Don't give up.

[Shelley]

Yes, When people decide to really suck, and tease and taunt me, I come here, and I sometimes vent. I know that having a seizure sux, especially meeting someone new, and this person is so cute. It sux when you are at work, and you think your fine until an unplanned odor or sound occurs. Or you just simply have to explain to a highly prejudiced person that what they are deliberately doing is not funny, and it will do nothing to cure me, but make me sick (and she would deliberately spray her 'avon' all over just to see what would happen).

It sux when you think you finally get a grip on your seizures, it happens and your tired and sore for days. It sux when you realize the crappy side effects of your meds cause more damage than renders help, and you can't find a reasonable alternative.

I get frustrated, even peeved, but I always run into my friends. Either here, or in the Weird Austin Music World, and slowly, things get better.

Yes, I hate it when I'm told how brave I am, or get a verbal pat on the head (cuz, oh that poor retarded girl). And I hate being told that stuff happens for a reason (give me one). And no platitude helps. But we want you to hang in there anyway.

[Bernard]

... Or you just simply have to explain to a highly prejudiced person that what they are deliberately doing (and she would deliberately spray her avon all over just to see what would happen)...

"Let me guess, you were one of those kids who used a magnifying glass to burn insects and frogs, right?"

[Birdbomb]

This can be considered asault! I had a girl do that to me at work and I nearly got her fired because of it. Allergies to perfumes can be triggers and can be deadly. That girl had to go into sensitivity training and give me an apology.

[mamaruns]

My husband and in-laws are understanding; my daughter is to a point, but I've always left the room if I felt anything come on so she's actually never witnessed me have one. My boys are too young to understand, and my family back east that hasn't seen me in awhile are in denial that I developed something like this. They said I was probably having panic attacks. I don't talk to them anymore now. How would they know from 3,000 miles away what I go through?

[Shelley]

"Let me guess, you were one of those kids who used a magnifying glass to burn insects and frogs, right?"

Not me, I wasn't allowed to do anything, and was rarely allowed to go outside and play. Didn't learn to ride a bike until age nine. I really think that such suffocation hurt, rather than helped.

[Bernard]

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.

[Cinnabar]

I have a few friends who are very supportive with my newly diagnosed condition. Most all of my relatives are so dangerously disfuntional that I've removed myself from them many, many years. However, I am extreemely close with my 91 year old uncle (shaper than all my bright friends put together). I have a third avaricious cousin who relates to my uncle but only because I believe she believes she stands to inherit money when he passes. After consulting my doctors a few weeks ago they said I should share my condition with my uncle and cousin. My uncle was very understanding and asked me to type instructions for him relating to what to do should I have an episode. How cute. He lives in FLA and I visit him once a year. I would never want to put him in a one to one situation with me right now and thought this cousin might need to be present with us. Not my favorite option (her response to my sharing was briefly unctuous and then onto her new kitchen appliances.I think my uncle has her number and wants to "chew on" the matter.
Does anyone have any input- or suggestions on how I can safely visit my uncle and have our solitary "quality time" where we discuss literature, writing, and theology -all the things third cousin couldn't be bothered with. She'd like to talk about her new second house and the stock market. I may have gone on further than the original subject but this matter knaws at me. Thanks - Laurie

[Danielle]

I would have to say that I am very lucky. My entire family and close friends have always been extremely compassionate towards my epilepsy. Even when I was at an ultimate low due to the effects I was having after my brain surgery, everyone was there to help me get through the rough times I was facing. It really helped out a lot!! I don't think I would be where I am today if it wasn't for them.