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

My Family and/or Relatives attitudes are:

  • Are all understanding and compassionate towards me

    Votes: 98 49.0%
  • is a divided mix, almost like a tug-o-war match

    Votes: 40 20.0%
  • Very cold and indifferent, keeps me isolated

    Votes: 16 8.0%
  • Family understands / Relatives do not

    Votes: 17 8.5%
  • Relatives understands / Family does not

    Votes: 3 1.5%
  • Only a few close Family member understands, everyone else shuts me out

    Votes: 26 13.0%
  • Only a few Relative members understands, everyone else shuts me out

    Votes: 7 3.5%
  • Had a Relative/Family member(s) that understood but are deceased

    Votes: 4 2.0%
  • I don't have any Family or Relative members that understands me or supports me

    Votes: 19 9.5%

  • Total voters
    200
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From the beginning, my mother was great, an absolutely amazing advocate. But she is a nurse! :) She still is wonderful! My husband is great. My step dad has seizures as well, although of a different type, so it is nice to have him to talk to. My biological dad doesn't "get" it. My siblings don't either. My sister seems to think I only have severe anxiety. As if she is the authority on neurological issues. I think my close friends are as symphathetic as they can be. They are very caring, or else, they don't usually make it into our close group of friends. Since my husband is military, it seems that we either move, or as soon as I make friends, they all leave. It's a bummer. I am currenly pouting as all of my friends have left, or are leaving as of May. I am alone! :( BOO!
 

hawke86

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Do families really understand?

I have often wondered if my family understands me. Sometimes I don't they do. I think they just say they do to get me to quiet it down. Do families really understand us? I have had that thought all my life. Does anyone feel that way or just wondered about that. I'm probally not the only one that feels that way. I hope everyone is having a great day.
 

RobinN

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Don't you think it goes both ways Hawke? Give and take... you have to try to understand them too. Sometimes my own family gets way too busy, and it isn't that easy to communicate.

A bit like what we deal with here on CWE. Needing to give a little, then we get back more in return. Once we make the attempt to find out where the other person is coming from , then we can help them to understand what we are about.

I am tripping over my words a bit... see, it isn't easy to communicate:paperbag:
 
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There should be some recommendations, in general, for parents who come to know that their kids may have epilepsy. Of course, I am not nor ever will be a parent but I think I can see alot of it...even from the outside. So here are a few:

1) First, confirm that it is, actually, epilepsy before making judgement

2) Read, ask doctors and do everything possible to get knowledge on the exact kind and, if possible, reason for their childs version

3) DO NOT PANIC!!! ESPECIALLY IN FRONT OF YOUR KIDS!!! Your initial reaction, right in front of your kid, will do alot to determine how they will feel about their condition and themself for a long, long time.

4) To the greeeeaaatest possible extent, do not treat your child in any way different than you would treat them if they did not have epilepsy.

5) Be ready to answer questions, to the best of your ability, with the greatest honesty (as to how much should be determined by their age) without sounding overdramatic but with courtesy and being willing to answer more if they so desire.

6) Be happy and willing to research more on epilepsy while not dominating the attempt. Be a co-researcher, not a supervisor/supervised. The more your kid can find out, on their own, the more that the kid will be confident that they can handle the situation themselves.

7) If they so desire, take them to or help them get in touch with other epilepsy groups or organizations that they can talk to kids their own age. Communication with someone that has the same situation and that they can feel understands them goes a long way as well. (This is something that I never really had)

8 ) Encourage your kid in that epilepsy is not the end of everything. Even if something does not work right now, it is extremely likely that something will work soon.

I think many parents insert their own fear/denial/being lost into their child early on without thinking of the repurcussions later on.

Encouragement, anti-panic, interest without dominance and confidence will go a long way.
 
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CJR

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I have to say that I had a hard time answering this poll. 95% of our family/relatives are supportive and understanding but... My brother and I have issues and this really seems to have kicked things up a notch. It infuriates me that he has never once called to check on his neice. He was the last family member to show up at her benefit and the first to leave. I try to explain the stress that it causes me to see my daughter experiencing so many seizures but because the aren't all tonic clonics he continuously tells me I worry too much about the "little" seizures. It's enough to drive me nuts.

Aside from him though, everyone has been really supportive. Amazingly so. My daughter and I have yet to meet anyone who is truly rude regarding her condition. Cross fingers that we never do...
 

nana1

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My mom and dad and sister are fine with it. My brother is the one who seems to be stand off when i have a seizure. If i am at my parents house, my parents will help or call my sister to come over and help ( she a head nurse), but my brother just backs away from whats going on. My daughter always ran away from me when i had a seizure, i guess it scared her alot. But now that my daughter is in her 30s she wants to be around all the time, calls me every other day checking up to make sure i am ok. She will come to ER when i am in ER cause of seizure, i usually only go into ER if they ( seizures ) are really bad, or if i am in store and store owner calls ambulance. My parents call every other day checking up on me also.
nancy :noevil:
 

Shelley

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There should be some recommendations, in general, for parents who come to know that their kids may have epilepsy. Of course, I am not nor ever will be a parent but I think I can see alot of it...even from the outside. So here are a few:

1) First, confirm that it is, actually, epilepsy before making judgement

2) Read, ask doctors and do everything possible to get knowledge on the exact kind and, if possible, reason for their childs version

3) DO NOT PANIC!!! ESPECIALLY IN FRONT OF YOUR KIDS!!! Your initial reaction, right in front of your kid, will do alot to determine how they will feel about their condition and themself for a long, long time.

4) To the greeeeaaatest possible extent, do not treat your child in any way different than you would treat them if they did not have epilepsy.

5) Be ready to answer questions, to the best of your ability, with the greatest honesty (as to how much should be determined by their age) without sounding overdramatic but with courtesy and being willing to answer more if they so desire.

6) Be happy and willing to research more on epilepsy while not dominating the attempt. Be a co-researcher, not a supervisor/supervised. The more your kid can find out, on their own, the more that the kid will be confident that they can handle the situation themselves.

7) If they so desire, take them to or help them get in touch with other epilepsy groups or organizations that they can talk to kids their own age. Communication with someone that has the same situation and that they can feel understands them goes a long way as well. (This is something that I never really had)

8 ) Encourage your kid in that epilepsy is not the end of everything. Even if something does not work right now, it is extremely likely that something will work soon.

I think many parents insert their own fear/denial/being lost into their child early on without thinking of the repurcussions later on.

Encouragement, anti-panic, interest without dominance and confidence will go a long way.
If more parents would be mature enough to do this, the child so affected would not feel like a mistake. I think parents should educate, not so much race and obvious handicap, but brain glitches as well. We didn't ask for this. I for one, am tired of the idiots who see you seize, then laugh. I am shy enough without these losers proving they are ignorant numbskulls.
 

CJR

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We are currently trying for Social Security Disability coverage for my daughter. The school encouraged us to try this as they are beginning to see more and more issues with her organizational issues as well as memory issues. My daughter is having a very difficult time with this. She refuses to believe that she is "disabled". I try at all times to be the best parent possible. Having said that though...It is NOT easy. I've told her not to think of herself as disabled but instead think of it as a health insurance label only. That seemed to help her understand the need for it but understanding and acceptance are two different issues. I've also tried to make it relate to her world. A young friend of hers has panic attacks and often needs the teacher's assistance to "right" herself around. I ask lots of questions about how she treats her friend during and after a panic attack. That way she can learn that her situation isn't much different and that hopefully she can expect to be treated the same way after one of her seizures.

There are no hard and fast rules to make Epilepsy easier for children to live with. But I truly believe that if we get the message out (as Autism has) that we will see a change in the treatment of people with Epilepsy.
 

super

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Don't you think it goes both ways Hawke? Give and take... you have to try to understand them too. Sometimes my own family gets way too busy, and it isn't that easy to communicate.

A bit like what we deal with here on CWE. Needing to give a little, then we get back more in return. Once we make the attempt to find out where the other person is coming from , then we can help them to understand what we are about.

I am tripping over my words a bit... see, it isn't easy to communicate:paperbag:
I think Robin is correct in saying it goes both ways. If I say nothing then nothing is said in return, and more often than not that is how I like it. Who wants to be reminded of their epilepsy, certainly not me, quite the reverse. Only those who have their epilepsy in the forefront of their minds and who seek out sympathy and attention want others to be reminded. Not healthy in my view. What a boring subject talking about me and my affliction constantly.
 
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my mother was very protective, and my father was quiet, and I dont think he wanted to make a big deal about it, but very supportive. my mom was the voice... my sisters were there, but I felt they think I made up alot to get attention...why would I do that ??? My co-workers just say, try harder...as if Im not trying now....I go in spurts...Over all, I do it on my own...I can talk about it, but I feel they think I am complaining..I am on social security disability, and my guy friend says, "you dont really work",,,,I am trying my hardest..he doesnt understand. When I say I dont remember, they say they dont remember either because of old age, and dont even bring up the epilepsy..
 

skillefer

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Hmmm....Well CJR, it's going to be while before you'll have to really think about it....but I always tell the parents of my students, that by the time the child turns 18, they may want to consider getting a conservatorship for the student....especially if they wouldn't trust the child with a checkbook.
 

Shelley

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Wish there was an instruction manual

my mother was very protective, and my father was quiet, and I dont think he wanted to make a big deal about it, but very supportive. my mom was the voice... my sisters were there, but I felt they think I made up alot to get attention...why would I do that ??? My co-workers just say, try harder...as if Im not trying now....I go in spurts...Over all, I do it on my own...I can talk about it, but I feel they think I am complaining..I am on social security disability, and my guy friend says, "you dont really work",,,,I am trying my hardest..he doesnt understand. When I say I dont remember, they say they dont remember either because of old age, and dont even bring up the epilepsy..
My parents were 'protective'. Not because of my 'e', but because of shame about me. My sisters were never even told, because it was a big family secret. My parents didn't want them telling people why I was the way I was.
They still think I act out to get attention.
Which has made it hard to accept who I am, and my brain glitch. The difference is that I chose to educate myself, because I feel it is the only way to improve the overall Me.
 
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I think this web site is wonderful !!! I am not alone, and it is comforting to know that there is somewhere I can go and vent or learn.. My family has been accepting, but I dont talk about it to them. Some of my friends dont understand either...my co-worker told me if I just tried harder..as if Im not...My memory comes into alot of of issues, and they just dont get it...I gained 20 pounds in 4 months when I was put on tegretol, and my friend told me that may be it was because i was eating too much and not exercising enough... I was very hurt because I had just lost about 100 pounds, and now I am afraid i am going to gain it all back. He made me feel like I did it on purpose...I am not over eating and I am exercising at least 3 times a week. do I keep him as a friend ? I want support.....not put downs....He is very weight consious..
My mother keeps saying, " you remember, You are just not trying " She Has been getting alot better lately.
 
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Try to keep your head up minnbikergirl. It is not them that have to deal with it, it is yourself. It may sound cruel but, in a sense, it does not really matter whatever anyone else thinks, it matters what you think.
Always know that you are worth it....you are just as good, if not better...than anyone else, no matter what anyone else says. Do not let their "opinion" of affect the fact that you know better.

To sum up, be confident in yourself because you know better whatever anyone else tries to make you feel. Be happy.

I know this is hard because I went through the same thing but when it really hits you that you are just as good as anyone else...and YOU know it....then it all falls into place.
 

skillefer

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Hi Minnbikergirl! I agree with Texas. My mom was always critical about my weight (still is) and I don't think she ever liked my hubby... the thing is, she's not the one that has to wake up in my skin and in my life... I am. When I realized that, I actually had some peace of mind. I am me. Nobody lives my life, or deals with my consequences but me. At the end of the day, I look at me in the mirror. I can choose to like what I see or not. But it's still me.
 
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most of the people i have run into, family, friends and co-workers are usually of the curious type, and if nothing else just what to know what they should do if something should happen. i find that helpful, because unless i'm bleeding or have bumped my head there is no use to call an ambulance. my husband had known me about two weeks when i had my first g/m in front of him. i know even though he won't admit it, that it scared him and he does better with the more he deals with, but it he never is truly "comfortable" with the situation. my 7 yr old seems to handle it the best, children always seem to adapt the best. she's only seen me have two and she has no problem "dealing" with it.
 

skillefer

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I'd been dating my hubby for about a month before I had a grand mal in front of him. I thought he'd turn tail and run. Glad to say I was wrong. :) Instead, he's been fantastic and supportive, even going so far as to take off from work to watch over me after I've had seizures. He goes with me to all my doctor's appointments. He's better friends with the nurses and staff than I am! :) This is even after my neurologist pulling him aside and explaining to him about SUDEP and how to help me after I have seizure.
The kids are pretty good about my seizures, though they are a bit protective. One slugged a teacher and had to be restrained by 2 yard supervisors when she saw me surrounded by EMT's. She got freaked out when the heart monitor they had connected me to flatlined...because they had unplugged me from it and she didn't realize. We both laughed about it later...but I've got to tell my employers that she needs to be told when I have a seizure. That way she won't slug anybody again.... :)
 

Belinda5000

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The most understanding to me is my husband and there are know blood relatives.
My hubby also use to have epilepsy.
MY mother never even called an ambulance when I went status she'd just call my aunt who was an RN.

I have some friends that are great for listening and there good support.

Belinda:e::twocents::pop:
 
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dfwtexas

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Only family members that know are my sons and they really don't understand it at all. My seizures are petit mal and they think of seizure on the grande mal level.
 
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