What is it like when a close relative has epilepsy ?

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Joyful

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Hi. I have always wondered what it is like for my loved ones who have to go through seeing me have seizures.
Growing up my parents and sibling had to cope w/ it, each in their own way. I sometimes think that maybe it's harder for them at times than it is for me.

As an adult, my husband and son have to live w/ my epilepsy as well. I often wonder what they must go through....
Many times after a seizure I find myself apologizing for it - I know, silly!

My family is very understanding and helpful - never once have they given me a reason to feel the need to apologize for having a seizure - I just do.
I am blessed to have a mother-in-law who is also an LPN.
She's been great as well.

I just can't help but feel that when I have a seizure it just causes a mess for everyone.
I have spoiled their fun many times. By this I mean that when we go somewhere, like a party or get together, if the noise level gets too loud, I will start having auras and we will have to leave.

It has gotten to the point that now whenever we do have to leave someplace early, for whatever reason, the first thing my son asks is, "Why are we leaving, Dad ? Is Mama having 'feelings' ?"

I just don't know what it's like to know someone close to you who has it - Am I a burden ?
:ponder:
 
Joyful

You are right you have no need to say sorry but that does not mean that we won't. I do not know if it is harder on those around us but I do know it is extremely hard on me and everybody else here including you and I do know that without our loved ones who go through this with us it would not be as easy. You a burden, No not by any stretch of the imagination are you a burden on anybody. You never spoiled the fun times at any stage, the epilepsy did not you, remember you have no control over what it decides. It has happened to a lot of us in different situations as well and we have all felt bad for it happening but it was not our fault and its not your fault.

Your son sounds like he worry's about you as well, that is a good son you have. You never heard your son say you were a burden or your husband and I have never heard my wife say it. Have you ever heard anybody who cares about you say that. NO YOU NEVER HAVE and there is a reason for that, is simple really, YOU ARE NOT A BURDEN.

YOU ARE NOT NOR WILL YOU EVER BE A BURDEN.
 
The first time my mom ever saw me have a seizure i was home from college and had the flu so I was taking a nap on the couch. When I came to she was holding my hand and crying. I asked her why and she said, "I feel like I didn't put you together right." She knew intellectually that it was silly to feel that way but you can't always help the way you feel.

I think the ones who love us often feel somehow responsible, like it is their job to protect us from pain and they have failed.
 
My mom has had a somewhat helpless feeling, I think. I'm referring to when I was a child. There were times when I was having a seizure and although I could not communicate I could hear her calling out my name. When I look back on those days, I think she felt helpless - for so much of my life she has done for me, and during my seizures, neither one of us had control.
 
Helplessness. Very true. The most common comment I have heard over the years is, "I just wish there was something I could DO".
 
I detest Epilepsy with a vengeance it robs my child of opportunity to enjoy life and it damn makes stuff more complicated with the challenges she always has.

I hate its unpredictability.
I hate it when my Daughter feels crap before an impending seizure and she cannot bloody tell me what she feels.
I hates its indignity.
I hate that it doesn't just affect her but it affects our outdoor activities as a family.
Epilepsy can destroy simple enjoyment that the rest can take for granted.

I hate it.

But you got to do the best you can and never stop learning and searching.
 
Wow. I've had epilepsy since the age of 9 and never once did I hear my mother say that she hates epilepsy. She did her best to make life as normal as possible for me. Growing up I did not feel different from my sisters or my friends at all. I was just like any other kid, except sometimes I had seizures. HATE epilepsy ? I never really gave it much thought.
One thing I know is that my mother, although I know she felt helpless at times - like we all did - she never said that she hated epilepsy. I'm so glad that she didn't. I don't know how hearing such a thing may have affcted me when I was growing up.
It probably would have made me sad b/c I felt bad enough when I would have a seizure - bad for my family, I mean. I hope your child never heard you say that. She can't control it. Let her know that you LOVE her. Often. Let her know that it's OKAY that the seizures happen. You know that she can't help it and you love her no matter what.
I know you don't mean anything negative towards her, but if she evn gets the feeling that mama hates epilepsy it will just make her feel bad.
This is the place to do your venting - not ever in front of your child. Here you can say how much you hate it all you want - we understand b/c we don't like it either.
But remember, she is just a child and needs to hear positive things from you.
 
I've had epilepsy since I was two and I always heard my mother say go lay down before you have a seize.Laying down never stopped me from having a seizure.My mother was over protective.I was had a cousin ask me not me not to have a seizure at a family reunion.I could never help if I had a seizure people in in my family were just idiots and they knew me all my life.
 
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@ Joyful.
It's what I honestly feel, I love my girl but I hate epilepsy. I have a child with Autism is non verbal & some. intellectual impairment. She already had it tough well before when she first had epilepsy back at the age of 6 in 2009.

Having a child with the added crap of Epilepsy is not going to exactly make me ecstatic.
so...
Have a realization that there's others who can't communicate well & have to suffer seizures.
 
I'm with you Blonde Angel. I HATE Epilepsy, too, although I didn't start having seizures until I was 22 years of age. It wasn't until after my 2nd child was born that the seizures became much worse. I lived 1500 miles away from family because my husband was a pilot, so when I had bad TC seizures, my kids thought their mommy was going to die because they would see me turn blue and shake like crazy. Nothing a child should ever have to witness! And my A*&%$&E of a husband at the time refused to change his flights so he could be home more. And then add the memory loss + the depression and for some, it is a nightmare! That is why I HATE EPILEPSY!
 
I know, guys. I have to say I'm not exactly celebrating over it. It's a real bummer at times. As I said, this forum is the PERFECTplace to say how much we hate it.
I'm very sorry for your daughter's situation, and I can't imagine how tough it must be for you to see her going through such a thing. :(
I don't know if she has ever heard you say "I hate epilepsy", and I don't know her age or level of comprehension. But I do know how it was for me as a child growing up w/ it. Yes, I was teased in school sometimes, but that didn't bother me much b/c I KNEW of my family's love for me.
To me, epilepsy was part of who I was - at least when I was a kid that's how I felt. So, as a child if I had ever heard anyone say that they HATE epilepsy, I would have taken it as that must be how they feel about me.
So, vent all you want on this site, or in confidence to someone close to you. But, please don't say it in front of your child - she may not understand. Of COURSE you love her, but hate the epilepsy. She may not be able to seperate her identity from the epilepsy yet.
I know that for me, once I accepted the fact that I had epilepsy, it became a part of who I was, at least that's how I thought & felt growing up.

I am not your child, but I know what it feels like to grow up w/ it, be in denial, then finally come to accept it. Once I came to accept it(I was abt. 10 or 11) I embraced it as who I was. My mom always made me feel that it was okay to be a little different.

You mentioned how you wish your child could tell you how she feels. I don't know and would never try to tell you that, but I can tell you how I felt as a child. If you look on my about page, you will find my story of how I felt growing up w/ seizures, what I went through, & what it felt like not to be able to communicate my feelings to my parents.

I encourage you to read it, BlondeAngel. I wrote it specifically in hopes that I might be able to help someone. Perhaps it may help you in communicating w/ your daughter ?
 
Hi Joyful
I did read your background info & thanks for the insight in your experiences.

I've got a girl with special needs & when it involves Autism with intellectual impairment there's distinct challenges that is faced. She is non verbal which means she can't talk all she has a special communication device which assists her to choose her needs & wants...very basic & limited but it's better than zilch. ATM we are trying very very hard for her to learn feelings.. Happy, sad, sick & angry.

She is 12yrs but her intellect is ..my guess at 3yrs ..her comprehension is fantastic, so I don't underestimate her thought processes at times. I will never give up on her.
She understand's your vibes & she's knows if someone's genuine or not. She knows if you are being angry or happy...so I'm careful with that. But like most kids she will try to manipulate to what she wants & of course as any parent.. There needs to be rules.

I hope in my life time there's going to be improvements in technology that will maybe open a door to her communication skills..I still feel there's something missing...
She can do complex puzzles on many apps in her iPad ..so there's intelligence in problem solving.

We try to include her in things, but we do some respite as there's a need for time out.& that she gets used to other people in her life.

The reality is she will need someone with her 24/7 for the rest of her life.
Welcome to my world.
My hubs & I will be there for her till the day we die.
:)
 
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@ Cint
I can see you've had your own crappy challenges in your life & if you have the added complication of not having a hubs that's not supportive it put a lot of stress to yourself & your kids in those yrs.
I've been fortunate I have a good man by my side, & I've seen some marriages go to the rocks .

In the world of special needs there is unfortunately kids out there who do act as the main carers for siblings or parent... That's not fair really... & they have it tough that there's no choice if they don't have supports or $$.

But in the end, at least those who are faced with challenges tend to be more open minded, tolerant as opposed to those who don't have that "poo happens" in ther lives.

That saying..
"what doesn't kill you just makes you stronger"
Ps.
I still get scared when I see my daughter have a seizure & I've had to learn to toughen up but the responsibility on a poor kid would be damn tough.

Be strong.
X
 
Just another comment.
There's no distinction between the person who has epilepsy & those who have carers, in that the feeling of utter despair of NOT having a sense of control. It's an awful feeling to have that. I'm sure some reading this would understand what I'm on about.
Epilepsy is not a temporary ailment.

It's not a temporary injury that happens, it's a life changing experience that can have good & bad consequences. Many of us do the best we can & we all got good & bad days.



I hope to goodness my girl grows out of this, but I have to be prepared if she doesn't....
Every time she gets a seizure my heart breaks. I hate what it does to her, the confusion, & it's regression in her development & learning.
Epilepsy does stuff things up.
 
Blonde Angel, thanks for sharing. Reading about your daughter reminds me of a lady I "met" through blogging. She has 9 kids, one daughter who is 14, but is mentally at the age of 2 due to a brain tumor she had when she was two.
She is a beautiful young girl named Bethany. Her story is an inspiration. The child has had to battle cancer, autism, and epilepsy in her young life.
Try googling faithfulmomof9 or livingand learningwithanewnormal Contact Sylvia, her mother. She is very willing to share her story.
 
Oh, correction on that site - it's sylvia phillips @ faithfulmomof9.com
 
Sorry about that - the link above will lead you to her blog which follows her story - the ups and downs.
 
I had my first seizure with my now husband about tow weeks after we started dating and I ended up in the ER.

My husband was sitting beside my mom and she started crying. He asked her what was wrong and she told him that he was probably going to leave me now that he sees what I'm like because that's what the guy did who I was with when I had my very first seizure.

My husband looked at her and told her she was crazy because I was great and he wasn't going anywhere!

Well 11 years later and I can't even begin to count the seizures he's still around.


Joyful said:
Many times after a seizure I find myself apologizing for it - I know, silly!

I just don't know what it's like to know someone close to you who has it - Am I a burden ?
:ponder:
Click to expand...

I just asked my husband about these questions and here's what he just told me:

I don't need to apologize that I have epilepsy. He is sorry that I've had a seizure but there's nothing I can to about it. It's not like I broke a plate or shrunk all the clothes when I washed them.

I'm not a burden. He's had several different illnesses through the years, cancer being one. He knows that I am sorry that he had it but I've stuck with him through thick and thin. The surgery, chemo treatments and much more. It's not like I could just snap my fingers and make it go away over night. There are still medical side effects that he is dealing with. He knows that epilepsy is going to be there forever but there's always the chance his cancer can come back.
 
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