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

[CathyAnn31]

my family too but they also know i have epilepsy so i guess their is a difference

They seem to think all my problems were due to me being a coke addict.
I've never done that in my life.

My 55 pound weight loss which I busted my butt for in the gym, my marriage problems, and my epilepsy is all due to my use of cocaine.

That really hurt.

Gee, thanks for the confidence family, screw you!!!

 

[seizingbeauty]

The "blood" relatives that I know of are ALL addicts! Let me tell you first hand the differences between being epileptic and being an addict are huge!
Hold on to the ones worth keeping and cut the rest loose. I know its saved my sanity

 

[Junebug]

Is thre a place that says that my siblings and parents all understand but treat me as if I'm a porcelain doll?

 

[C0urt]

I have a really small family, almost no one on my mom's side, only a few more on my dad's.

My dad doesn't understand when I try to explain my memory, and I don't think he has actually ever seen me have a grand mal or know how often I them. They don't know about the pain or depression.
I try not to hold it against him, but I didn't like him before I ended up living with him.

My grandmother understands the seizures the pain and stuff, but does not understand the loss. "lifestyle, motorcycle, that sorta thing" For no reason makes it worse. She is a bit over protective at times. But it is nice having someone who cares I guess.

My mom understands and was with me at my worse, when I first came out of the hospital, and still trying to accept the fact I had epilepsy and was living with my mom.

my friends are not used to giving me rides places still. But everyone has taken it pretty easy and adapted well. I read some of these stories, I still want to cry sometimes. but it seems like I got off easy.


There are several people I would like to jut hug or pat on the back for making it this far.

 

[seizingbeauty]

I read some of these stories, I still want to cry sometimes. but it seems like I got off easy.


There are several people I would like to jut hug or pat on the back for making it this far.

Just cuz your story is different than others, doesn't make it less of a journey than anyone here. We each have our own paths, I'm just glad that my path crossed with everyone here.
And just for you (((((HUGS))))

 

[C0urt]

thank you

 

[gigi]

WOW!

Kinda sounds like we are still in the dark ages by these stories. My first seizure was age 11. My Dad got me into gymnastics, so he kinda tried to make me feel good about me. School was awful, my seizure brain I think has always been there. I had the attention span of a gnat. Socially I did alright, was smart, attractive:bigsmile:. Like so many here, I had seizures in H.S. but was not medicated. For the life of me why my family did not get me help, and my mother was a nurse!! Already had a seizure history too. I am 52, and my family, god love them, still does not discuss my "fits", nor acknowledge the residual of seizures and meds. They are all educated people with degrees of higher learning. When we are all together, and we are talking about something from the past and as usual I can not remember. I get soooooo mad at my family-it's the damn DENIAL!! My Mother met Karen Armstrong, a writer who was a nun for a time in the 60's. She has epilepsy, the nuns just thought she was doing the ol' trying to get attention thing. My Mom I think talked to this woman more about her epilepsy than she talks to me about mine. I understand with a degree of maturity that I am her child and that makes it more difficult, as though she caused my E. My parents are elderly, but still very alert minded, so it is okay. They did the best they could.

 

[flinnigan]

Everyone around me is very supportive and have been a great help. They helped get my children to events and kept them overnight when I was in the hospital and got them off to school. I have amazing friends and family. EXCEPT for one my own MOTHER. Not sure if its guilt or shame but she apsolutly cut me out of her life 3 months after my diagnoses. She sent two lame cards before each hospital stay but very hollow. 2 days after her cutting me off I had the worse seizure I'd ever had. A few weeks later her friend called me trying to get me to patch things up within seconds of the call another seizure. So I don't miss her one bit she's the biggest stress inducer in my life so sad as it seems Good Ridden s.:clap:

 

[Shelley]

Your right

But I have never had anyone supportive of me. I was the family embarrassment.
I believe I stated in another thread that I overheard my parents say that I had 'petit mal' epilepsy. In other words, in shame, they admitted that I had epilepsy, apparently because I was having seizure difficulty during my uncles visit with his 'girlfriend'. She left 'because of the strange child'. Fortunately, she dumped him, and the next person was very nice toward me. (My aunt had died of pneumonia, so he looked for and found a wonderful person, who recognized some of my triggers, taught me about self care, hygiene and make-up. I liked her.
My parents still thought I was faking even though during sleep deprived EEG, my brain waves were not 'normal'. I had one more during a health fair recently, and it still showed an abnormality, yet my doctor doesn't believe me, and treats me like I'm retarded. (I'm tired of hunting for new doctors, but if I have to, I guess I will. I just didn't like the experience on meds when I was a kid- no control.)
People at work make fun of me all the time, but my epeilepsy isn't exactly secret, and they refuse to be educated- for religious 'reasons'.

 

[flinnigan]

God Shelly I'm so sorry. Have you been to an Epilepsy center or and Epileptologist. If you haven't get there. There are tons of level 4 centers in Texas.

You can research it further through the National Association of Epilepsy Centers at http://www.naec-epilepsy.org/

Good Luck. Keep up the fight. Between my "illness" and my sons I learned you have to be a strong advocate of your own health care. Knowledge is power. They told me nothing was wrong for 9 years it took having a seizure in a Docs office to finally get to a Neurologist.

 

[McGill]

Posts 39 & 44 described my situation best. One member mentioned that his/her parent didn't tell him/her b/c (s)he was afraid that the member would have a seizure.

What such parents are doing is actually trying to live your life and not allowing you to experience the reality of life. That's wrong for them to do that, even though they mean well.

I had no-one support me in my family. Given my parents' generation and its belief system, I was a "scourge" or a "shame" to the family and that I have E is something which is never to be mentioned. Such dysfunctional thinking and denial!! The only support I got was from my DM's brother who lived 1,000 miles away and then, I wound up doing all the spade work!

I gather that if you lived through the Great Depression of the 1920's, you were supposed to keep such "skeletons in your closet". Such unhealthy thinking!!

I believe that fear dominates peoples' reactions rather than take the time to listen to the person when (s)he needs to be heard. That would clarify much, I believe.

 

[Elsie]

Well this is an old thread, but here's my 2 cents:

My parents did take me to hospital and drs. and get medicines for me, but never would talk to me about it. I never discussed it with Dad, not even once. Mom was in denial, I think. Growing up, anything I wanted to do she'd say, "Oh no you can't do that." Wow did that affect my vocational progress!

When I'd have problems, my family would visit me in hospital, but for the most part I was on my own. For a while with my Mom I had the problem of her being fixated on how one could solve all their problems just with positive thinking. Like, if I had more faith it would all go away.

I've told a few friends recently, and it's always the same sort of reply. I get the deer in the headlights look, it's like just such a shock nobody ever says anything. Never any questions, never any interest. Like maybe it'll rub off on them?

So I'm pretty much alone in all this. DH loves me I'm sure, but he's the strong silent type. If one has any difficulties, they should just tough it out, etc., and that is how he is about his afflictions. He never asks how I am feeling. I doubt if he'd have any idea when I was at the dr. last or even who the dr. is or how to get ahold of him.

Now, I could hide all this from everybody. However, as I get older and think maybe some day I'll need some kind of help, and God forbid, have some sort of relapse where my control would go away, I'm afraid I would be all on my own. Even my daughters never speak of it. I'm hoping that old age is easy on me...

 

[occb]

I've told a few friends recently, and it's always the same sort of reply. I get the deer in the headlights look, it's like just such a shock nobody ever says anything. Never any questions, never any interest. Like maybe it'll rub off on them?

And here I was thinking partner's family was unusual. I've heard him on the phone with his family telling them about his seizures, but they don't ask anything or even react. The time I was in the room when he told his brother face-to-face, and he just sat there like partner hadn't even spoken, I blew up. I bellowed "What's wrong with you people?! He just told you he has seizures and you just sit there like he was talking about the weather" :lol:

Still, no questions, no interest. Yeesh!

 

[Shelley]

Well this is an old thread, but here's my 2 cents:

My parents did take me to hospital and drs. and get medicines for me, but never would talk to me about it. I never discussed it with Dad, not even once. Mom was in denial, I think. Growing up, anything I wanted to do she'd say, "Oh no you can't do that." Wow did that affect my vocational progress!

That sounds so much like how I grew up. Dad always said talk to mom, mom was in denial.

When I'd have problems, my family would visit me in hospital, but for the most part I was on my own. For a while with my Mom I had the problem of her being fixated on how one could solve all their problems just with positive thinking. Like, if I had more faith it would all go away.

I never had to go to hospital, but I did have to go to these quarterly appointments with a doctor. Mom was the only one that would get to talk to him. I just sat there, zoned out on meds. Never got to say much, except for when asked a direct question. My mom also thought faith would make it all go away

I've told a few friends recently, and it's always the same sort of reply. I get the deer in the headlights look, it's like just such a shock nobody ever says anything. Never any questions, never any interest. Like maybe it'll rub off on them?

Never told anybody. The way I was treated when I was a kid, makes me a little cautious with that.

So I'm pretty much alone in all this. DH loves me I'm sure, but he's the strong silent type. If one has any difficulties, they should just tough it out, etc., and that is how he is about his afflictions. He never asks how I am feeling. I doubt if he'd have any idea when I was at the dr. last or even who the dr. is or how to get a hold of him.

I have no DH. However, my ex said he had it too. He used mine to taunt and torture me psychologically. Incredibly enough, my religious upbringing taught me to stick with such abuse. He never had a seizure in the 3 yrs of marriage.

Now, I could hide all this from everybody. However, as I get older and think maybe some day I'll need some kind of help and have some sort of relapse where my control would go away, I'm afraid I would be all on my own. Even my daughters never speak of it. I'm hoping that old age is easy on me...

 

[Dirt_in_the_ground]

Are all understanding and compassionate towards me.

As my dad has epilepsy and a lot of people on my Dads side has it too we're all pretty much there for eachother.

 

[stilldancing_98]

My epilepsy is pretty serious. They wont take me to the hospital they are to busy for me. They don't call me.

 

[CQ:)]

My parents & siblings were used to seeing me have tonic clonics as a baby so when I started having seizures again in 2002 after having no seizures for approx 21 years they didn't freak out. My family did worry a little bit when I started having seizures again but were still all very supportive. My Mum is the main one who worried about my seizures (guess you could call that Mothers instincts lol), mainly when I couldn't get my partials under control. Now that my seizures are currently under control my Mum doesn't worry as much as she used to.

My Nanna (on Mums side) has always treated me differently to her other grandchildren though. Even to this day although I'm 34 I feel like she treats me a bit like I am still a child & feels sorry for me because I have epilepsy.
My Other Nanna (on Dads side) has always been great about the epilepsy & I am pretty close to her.

 

[MaeDae]

Its just me, myself and I.
IT HURTS LIKE HE--!!!!

 

[hotwire]

I remember the day the doctor told my parents I had epilepsy... fast forward what feels like a billion years later, the "E" word is never to spoken about in my parents presence, as far as they are concerned, it doesn't exist.... Most people around me don't know what it is and don't care to be educated about it. Frustrating really.

 

[car05161967]

My family understands the medical impact of my Epilepsy. But they lack any understanding, of the emotional/psychological impact Epilepsy has on me. Even after my (ex)wife's ignorance, when I had a seizure, yet she did nothing for me.