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

[brain]

You may comment if you so desire

 

[POSITIVEPERSON]

Yikes thats a complicated one. Since my parents are gone ,I have nothing to do with my sister and brother. There was a time my brother was the best brother you can imagine !!!!!!!
Took me in ,helped me out . But when I met my husband he said if I leave I can't come back ,it hurts too much and we went our seperate ways. My sister and I never got along and she was never their for me. But my mom and dad were always their for me . MY husband is the best !!!!!!!! He went from not knowing a thing about epilepsy to learning everything he needed to know to care for once I got sick because of the jerks in MTL.

Riva

 

[Birdbomb]

Boy, that's a toughie!

The ones who are the most supportive and understanding are not blood relatives, they are my 2 closest friends. They show the most compassion/concern, ask questions, and seem have no denial issues at all. My relatives suck, they have always isolated me and epilepsy just added to to rift.

I deal with my issues basicly on my own. It's been that way all my life. Lucky me. 8)

 

[brain]

Boy, that's a toughie!

The ones who are the most supportive and understanding are not blood relatives, they are my 2 closest friends. They show the most compassion/concern, ask questions, and seem have no denial issues at all. My relatives suck, they have always isolated me and epilepsy just added to to rift.

You could have also selected as it's
multiple choice:

I don't have any Family or Relative members that understands me or supports me

 

[Birdbomb]

Well I have one brother who does care so I really couldn't exclude him. My son is somewhat understanding but let's just say he is in less denial than everyone else. Then there are those who just don't get it and never will, like my husband and daughter.

So I think my choice kind of falls in the cracks. No matter. :dontknow:

 

[brain]

Seems like everyone's in a Tug-O-War.

I myself am in a Tug-O-War, my son is
defensive and protective of me. But I did
have a couple relatives who did care who
are deceased.

I think the whole issue is basically:

"IGNORANCE" or "DENIAL" or "JUST PLAIN
OLD IGNORANT AND CHOSE TO BE THIS WAY"

People wants it to be "someone else" and
not their own (family member or relative)
and they're torn apart.

Remember, the fault does not lie with you,
but rather the individual themselves with
the exceptions of those who do care.

 

[Meetz1064]

Mmmmmmmmmmm, I have so many health issues in addition to the ep, it's almost comical. And in terms of family, I think only my daughter really understands. My best friend, whom I also call my sister, does, too. That's it. No one else. My boys, well, the older one gets it more than the younger one does. Their father? Ha. We're still married, sadly, but he's of no help at all. When I've had a seizure, it's always my sister that took care of me, not him....when it should have been HIM, not HER. Sorry, I digress. My parents........well, my mom stuck up for me when I was a kid, but now.....they just blow me off. So, I stick up for myself really, most of the time.

 

[spinnymommy]

My brain injury issues are much more apparent than my seizures. Often no one can tell whether I am having a seizure or I am just shutting down my brain. I can control my brain "shut down" and do this by sitting there staring ahead thinking of nothing. I do this when there is just too much stimulation and I simply can't handle anymore. If they force me to interact, I usually get confused and anxious. I guess this doesn't look much different from one of my complex partial seizures.

My family is mostly over protective of me. A few accept me as I am and give me help when I need it and encourage me to do the things I can.

 

[Byron]

My family has never had an issue with my Ep. My sister was the first one to see me have a T/C at the age on 15 and she did a great job of calling 911 and taking care of me.

I dont think anyone in any part of my family was ever scarred to be around me or looked down upon me. If it happend, it happend. Nothing more and nothing less. Then again both my Father and Uncle each had an isolated seizure in their younger years. So this wasn't something they hadn't seen before.

 

[Tate]

I am luck I have a very supportive network of both family and friends, the are all caring and very compassionate...
Some do have trouble with understanding... though it doesnt stop them from being supportful and caring
I also find from the ones that do not have full understanding is more fear not of my condition of being scared that something could happen to me... now I am preparing for surgery in a few weeks so many have stepped up and I am so thankfull that the people including my friends have gone out of there way to try to have a better understanding, i have 2 special and dear friends that have also educated there children and one of my friends children took care of me during and after, with care and confidence...
Support certainly make a difference and understanding and giving support and education to your friends and family I finf just as important if one does not know one cannot be expected to understand

take care

 

[wonderdogs]

Having been diagnosed so recently I am not sure how many of my extended family have heard yet. I told my immediate family and they were all relieved that I finally had and answer and it could have been much worse.

 

[Radiant Eclipse]

they are all very supportive and compassionate

 

[PurpleAngel]

Most of the people surrounding my daughter are caring and understanding. The person I have had the most trouble with is my DH/her father. She fights taking her meds, each and everytime. She is so stubborn that she will make herself throw up after taking them. Then he has to add with her in ear shot that he thinks this is all bullsh*t. Any kid can roll their eyes and ignore people around them and they aren't "rushed" off to all these Dr's. He truly believes that I take her to the Dr. for the attention. Okay fine think that. But what is the neuro. getting from it? Not like she gets a $1000 bonus for every kid she puts on meds. I have offered to make the appts so that he can be there. I have told him that I am more than happy to let him sit with her during the 2 hour EEG's...

 

[Stacy]

As you all are aware, MY husband is the best! My family supports me, and all my friends also. Every once in a while, I'll come into contact with a person that thinks I'm not all there. These people are not taken in as "friends". They are few and far between.

 

[Axa]

When I was a kid, my parents were understanding but way, way, way too protective, especially since I have just simple partials which last a few seconds. They behaved as I would have cancer in last stadium, they were all sad, they panicked all the time ... So I had to fight a lot - fortunately I was determined & stubborn kid, otherwise my life would be hell and I would have never attained my life goals. I understand they love me and all that - but this doesn't excuse such an harmful attitude.

So I had to fight them long years - and I don't regret it. Later I've been 20 years without seizures & without therapy so everyone nearly forgot about my E.

When seizures returned I haven't had told my parents since I don't want them to be on telephone five times a day, asking me if I took my pills, how I am feeling, how I shouldn't work so much. Etc. Etc. Since my seizures are sort of "cosmetic nature" as my neuro has put it, I am not conscience-stricken about not being honest with them. I simple want to live normal life without my parent's hysterical attitude (there is no other word for their behaviour).

As for my husband, he is great. He doesn't take E as something special, since he used to work at neurology ward. He has seen a lot of seizures and thinks mine are "nothing special". But he is supportive, especially when I had troubles with side-effects. He helps me just when I ask for help - and I love him for this.

 

[halcyon]

Me too..I mean I was the most likely to succeed and all that crap but the siezures started probably way ealier but first documented at 20 and I can't remember a thing from those two years (I've been seizure free for 3 years) but my family and friends still act like it was some shameful period...like I did something horrible and no one can discuss it or I was a bad friend when the truth is I was in and out of hospitals on a million meds and soooo lonely...I have pretended it never happened and dealt with it on my own but every now and then I run in to some one who knows me and I can't remember them and it just sucks... I've never been on this site so I apologize if I'm venting but sleep makes a huge difference..I'm sure a million people have said it but it is true...I was on 12 meds at one point half of which were to treat side effects and I dropped my neurologist and did transcendental meditation, acupunture, and still take esgic plus and klonopin(which I'm hoping to get off of) and haven't had a siezure since. You are lucky you have someone who understands! My parents act like it never happened..as my father said "I don't like to discuss shameful things" ...which is fine I'm a tough cookie I just don't have a person to relate to about this. So seriously kiss that husband of yours because having someone who gives a **** that is the most important thing.

 

[halcyon]

my family and friends pretend like nothing happened

I've had petit mal seizures, absence seizures, and horrendous migraines since I was old enough to remember but it wasn't until I was 20 that I had my grand mals. I dislocated my jaw, was heavily medicated, scared the *** out of everyone I know/knew and cannot remember a thing about those three years. So here I am alive and well and haven't seen a neurologist for 3 years(she overmedicated me-to the point that she upped my lamictal and prescribed an epi pen for when my throat would close because the thought of prescribing klonopin- which was the only thing that worked- seemed to her like a party drug for someone my age-ps she is the most famous seizure specialist in the US) and told me I could never go to school again cuz of brain damage. I now have a degree from USC..basically they aren't always right. My family doesn't discuss it at all my father once when I brought up how I could pay him back for the medical fees acted confused and then finally said "I don't like to discuss shameful things"...my friends all think I'm insane because they either witnessed a pre seizure or post and then there are the people who (I can't remember) who met me during the seizure phase when I was having a grand mal every week while on 9 (at least) meds. I deal with it alone and when people ask me what I did during those years I change subjects...I know it is not healthy but it is what I do. If you have better suggestions let me know.

 

[Bernard]

shameful things? Shame on your father for being so small minded. Epilepsy is just a medical condition.

I believe that being open and honest is the best way to live.

 

[RobinN]

I agree.. shame on him.
I am a parent and all I want is the health and wellbeing for my daughter, so that she can live a life that she has dreamed about. As I learn I share with others. I believe slowly one by one we can educate the world. By pretending it never happened that adds fuel to the fire. Knowledge is power, and compassion for all involved is essential.

 

[Shelley]

Its been too long ago since I had to deal with family, but they all accused me of wanting to get attention. I talked to my youngest sister a few months ago, and she doesn't remember any seizures.
The rest is speculation, but it seems as tho' they were in denial about my neurological health. I was baptized at an early age. I guess I had a gas grimace that they interpreted as willing to be saved.
My mom always gave me wild stories as to what happenned at my birth. She has since passed away, so getting the truth out of her is a bit tough.
Same with my dad. My other sister wants nothing more than to coddle me like kindergaten until she doesn't get her way.
I have learned to try and hide the absence seizures, but I am still taunted and teased at work, as tho' someone has told them everything, and its fun trying to see if they can trigger a seizure.
No HR is of no help, cuz they look for any excuse to fire people, and the union sux, cuz I'm no longer a steward.
I recently 'came out' to my doctor, and her jaw dropped. I feel as tho' I made a bad mistake trusting her like that. (My paranoid mother taught me to not trust people.) I guess I was hoping she could get ahold of my childhood medical records, as I haven't been able to.
(Sorry folks, I live in an idiots state, and my self esteem sux, cuz I was told to be ashamed of my self for being the devils child.)
Sorry, rants belong in another department. aperbag: