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

[Franciz]

My family is super protective that i have a very early curfew at home.
Some girls turn off to me when they discover that i had epilepsy before.

[Pinky]

My dad and brothers are great. I'm newly diagnosed, but they've been very supportive. I'm very close to my brother's wife (she's the sister I never had) and she's also been absolutely fantastic. They do phone me a bit much but that's only because they are all worrypots and I live alone. The calls are getting less though. If I told my stepmother she would probably develop epilepsy as well. She's one of those people.

Some of my friends really surprised me. It's like they don't know how to talk to me anymore and avoid me when they can. At least I've found out who my real friends are... Another told me I must take vitamins and this will all go away. When I told her about the simple partials (because I now had a name for it) I was met with disbelief. The fact that E comes in more forms that t/c is not sinking in.

I've really found out which people at work can be called friend as well. As my t/c's occurred at work, everyone in my dept is aware of the E. Some people are really shallow and pathetic when you get down to it. Oh well... If they can't handle it, they can go get stuffed Life's too short to worry about people like that.

[stilldancing_98]

Let's see. Growing up this is what it was. Dad never saw me have a seizure until I was in my 30's, but when I was little he was about to get a speeding ticket and made me fake a seizure. I thought, cool, so Dad got out of a ticket.Of course Mom was not there. My mom was there for me every time I had a seizure or cried because I had epilepsy. My brothers younger than me made fun of me but protected me from others making fun of me. Epilepsy was and still is no big deal to them. My mom let me do anything I wanted to. Back in the 70's she was an advocate for epilepsy when epilepsy was not even heard of.I am kind of daring now because of that.My brother's help me out and send me on trips because I can not afford it.My Dad is gone, I loved him much, he just didn't get it. And my mom is still in my life almost every day and I some great friends that have kids with dissabilities and we go out or just talk. So all in all I have a great support system. Sorry I wrote so much.

[Belinda5000]

since I've had epilepsy all my life.
I've found out what kind of people really care for me as a friend,and those who can't handle my seizures can't handle me.
My family growing up had 3 older sisters who'd all run tell there friends about there little sister with epilepsy.
Now they act like they care but always just ask howre my seizures doing not me.

I'm married to a great who'd do anything for me who had seizures 4 a few yrs before he had brain surgery that was successful.
Belinda

[stilldancing_98]

You know I really learned from everybody in my family to pretty much have a sense of humor and don't let it run my life. Sometimes it feels like it does with my B-surgery and stuff years ago.My mom still really pushes me to be independant.

[s10sleeper]

My family seems to be fairly divided. While they may ask how I am doing, they act as though I owe them the world if I ask for anything. I try not to ask for much from them and have always tried to do as much for possible for everyone. The one person that I thought would be the least compassionate in my family has been the most, and that is my father, I think the biggest reason is that when he started going blind due to his diabetes I had him move in with me to take care of him. I remember after coming to from one of my seizures a year ago I was told I was screaming like a baby and when I came to my father was sitting by my bed crying his eyes out, the only time I have ever seen him cry. My mother has been in a mid life crisis ever since the divorce, and she spends more time with my other brothers buying them anything they want and going on cruises. My sister and brothers don't do anything unless there is something in it for them and so I have stopped asking for any help or seeing if they were ever coming over to visit even though they only live 15 miles away. Other than my father the only other people that are compassionate about everything going on are my 2nd cousins. I never thought that my family would push me off like this but it seems to have happened.

I just continue to try doing all that I can and anymore recently gave up on trying to do anything for them, in preparing for surgery changed who my life insurance was signed over to and have been in the process of setting up a living revocable trust to go to someone else that I can trust to take care of my father with the insurance and they get all the assets that were going to go to my family in case anything ever happens to me.

[swimmy]

I had a wonderful surprise during my video EEG this past week. My parents came daily...they wanted to, and they wanted to help relieve my husband from duty so he could work. My sister, whom I've never thought had any feeling about it, came by and spent the afternoon with me. My niece stopped by twice. My two other sisters kept in touch via my parents because I was too tired to talk much. My in-laws took my kids the entire week and continue to help since I'm taking a break from driving.

So...I feel very blessed to have a supportive family, and their understanding when I continually flake on get-togethers, forget about gifts, etc.

To all of you who don't have the support many of us do, I hope you have found some "real life" support via your local Epilepsy Foundation or the like, and at the very least, frequent posters in this forum.

[Crystal11]

My twin sister and I have complex partial seizures and also have blindness/low-vision and hearing impairment. Sometimes it's hard to tell if we just didn't hear something or are off in the "Land of E" or in a seizure rather. My twin and I help each other out and our best friends help out too when we are with them. Our Parents understand about our disabilities but I don't like for them to have to "Care" for us when we are now 25 years old. I feel I would rather deal with them on my own then to put burdens on Mom. She knows when something is happening but my seizures don't require a lot of help unless I start to wander around. As with all of our disabilities or conditions there are certin ways to deal with them and after so many years of having them, everyone kinda just deals with them as they come. I would like my Mom to know more about complex partial but just knowing the basics is better than not knowing anything at all. I've had seizures since age 6 and blindness and hearing impairment from age 1 due to prematurity and many medical problems as a result of being born at 1 pound.

Everyone take care and be safe..
-CM

[joey]

My twin sister and I have complex partial seizures and also have blindness/low-vision and hearing impairment. Sometimes it's hard to tell if we just didn't hear something or are off in the "Land of E" or in a seizure rather. My twin and I help each other out and our best friends help out too when we are with them. Our Parents understand about our disabilities but I don't like for them to have to "Care" for us when we are now 25 years old. I feel I would rather deal with them on my own then to put burdens on Mom. She knows when something is happening but my seizures don't require a lot of help unless I start to wander around. As with all of our disabilities or conditions there are certin ways to deal with them and after so many years of having them, everyone kinda just deals with them as they come. I would like my Mom to know more about complex partial but just knowing the basics is better than not knowing anything at all. I've had seizures since age 6 and blindness and hearing impairment from age 1 due to prematurity and many medical problems as a result of being born at 1 pound.

Everyone take care and be safe..
-CM

your very lucky to have someone so close to you who understands what your going through!

[moonchild1970]

My husband and our two kids care. The rest of my family (Mom and two sisters) couldn't give a hang. They live out of state and never call. I call them once or twice a month. Just because I feel I should to see how my Mom is doing.

[stilldancing_98]

Its hard. Because most people just care about what they are into. There are a few who really care. who will stick by you your whole life. And in my opinion they are people who love and give a lot to others too.Teresa

[CathyAnn31]

My family all thinks I am on drugs.

[joey]

My family all thinks I am on drugs.

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

[dfwtexas]

I take a lot of rx drugs just to get by. I have chronic pain in my arm from my accident, my mom asks me all the time when am I going to get off the pain pills. I tell her this is a lifetime condition. She asked me again this week and I told her "I will be on them until I die, so please stop asking". She says I am overdramtic and tells people I am drug addict. I really limit my contact with her. I try to call their house when I know my Dad will be there alone.
Luckily I have some very supportive friends that understands me.

[Sheri]

I have not given anyone a chance to accept it or not. Nobody knows except my husband and three of my friends. (I only told them because I had to explain why I needed a ride.)

[dfwtexas]

I didn't tell my parents until I had been on seizure meds for several months. My son told me they were noticing my problems with moods etc. I don't know I would have told them at all if not for that. My friends are very supportive

[IMgood1]

My immediate family was and is very understanding. My other relatives didn't always understand and were not as tolerant of things they did not and do not understand. A little education would have gone a long way, if they had wanted to learn. Those who did are great the seizures and just "roll with it".

[Chris515]

Most of my family are amazingly supportive.

I've had some "friends" though that wanted nothing to do with me when they find out. That plus the part of town I'm from made things uncomfortable at one job.

People shouldn't be so judgmental.

[seizingbeauty]

Other than my daughter I have no one who is blood related to me. However my daughters fathers family and my boyfriends family are actively involved in my life. Most of the ex's family try to be undrstanding but worry about Little one's safety and often make me feel incompetent or useless when it come to my daughter. My bf's family is more understanding, his sis and I share the same B-Day and have been calling each other Sister for years now. They worry more about me and can be a little over protective but its certainly better than the alternative.

[Shelley]

Most of the ex's family try to be understanding but worry about Little one's safety and often make me feel incompetent or useless when it come to my daughter.

My family was the same way when it came to me and my sons. By that time, my ex had brought me to Texas, and I was alone, since we had just arrived, and I hadn't talked to anyone let alone made friends.

A little education would have gone a long way, if they had wanted to learn. Those who did are great with the seizures and just "roll with it".

Unfortunately, not enough people want to learn and just "roll with it". It is easier to be so unrealistically judgmental and close-minded. I remember seeing a co-worker for the first time. She was wearing a burka. She had been wearing one for years, and had been working in another department, so I didn't see her till just after 911.
We finally got to know one another. She is great to be around, and has a wicked sense of humor, not bad for a boss.