Positive or Negative post. This is not a nice world

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"If you can't be nice don't say anything at all." The above is the title of a post. I have read the post and some responses. I don't know exaclty which post the lady is writting about, but we must live in a reality world. No, I don't think being rude or cruel to someone is the right way to respond to that person's post. I also don't think E's should continually sympathize with a fellow E. E is not a condition that anyone wants to live with. Their are people who still look at it as a sign of evil spirits in us. Their are still people who don't know what E is. I admit I do not know everything about other conditions or diseases. I also admit I don't know everything about E, but I do know E's cannot and should not use the condition to gain sympathy. E's write about depression, loosing friends, stuck at home, pain, simply thinking they are stuck in a hole. People who write these post and don't take advice from other E's are people who sre using E simply for sympahty. I cannot feel sorry for a fellow E who does this. As a teen I thought of suicide, I even held the pistol in my hand. Here I am, I guess I am a thorn in other E's sides. MY PERSONAL FEELING BECAME I would quit feeling sorry for myself and I would not take the easy way out. I also was called names, BEHIND MY BACK. A friend told me of two guys calling me PUMPKIN BRAIN. He wanted to go kick their A****, but I told him, "If I fight them I will have to fight millions of IDIOTS just like them." I also said, "Me having epilepsy is their problem not mine." I wrote this not to offend people, but I want to make sure E's should take the positive and the negative. Live in a reality world and don't use E for sympathy. If you are going to write a post hoping to gain good advice, don't respond with posts that tells others you don't care what they write you are simply going to feel sorry for yourself. Just remember their will always be somebody in worse condition than you. Good Luck, E_Loner

Comments

Re: Positive or Negative post. This is not a nice world

Submitted by aquila316 on Fri, 2006-05-19 - 07:50

As I said before in another forum, I understand being self confident, independant, and not wanting people to feel sorry for you. What I don't understand is why looking for support and love is such a bad thing. My current relationship has no nurishment because of my condition, so should I just give up looking, and face facts that NO ONE will ever accept me for who I am, so why bother trying, right? I should just forget about dating, and be solitary, and alone with only my dog untill I die. This is the point, right? I can understand not wanting people's pity, but should we just become cold, self serving, and narcissistic, because most of us don't have people who love us for who we are, or don't take the time to learn about or understand our condition? I don't know about anyone else, but I am only 33 and am hoping I don't have to spend the rest of my life alone. I mean, there has to be a man out there who is willing to love me for me, even with E, right? (I think I had him and let him go--stupid, stupid girl). I've said it before, and I'll say it again, I'm not looking for people's pity, just thier acceptance. I was always a free spirit and very social person up untill a few eyars ago. I'm still (we are all still) human beings who should love and accept and support one another and who need other's love and support in return. What do they say: No man is an island??? Susan

Re: Re: Positive or Negative post. This is not a nice world

Submitted by Spiz on Fri, 2006-05-19 - 09:21

Susan, Last I looked this was a support forum. Support means exactly that...support. Whether it be information, understanding, compassion or all of the above. One person's opinion does not the facts make. You are in the right place. E_Loner, You used yourself in order to give examples of your meaning. I will do the same. I will 'agree to disagree'. I have had epilepsy for 32 years. I would rather rip out my tongue than to say the words 'I can't' due to epilepsy or think for even a minute I can't accomplish what I set out to do. I was raised that I could do anything anyone else could do. I've always had that feeling that wasn't good enough. I had to not only do what everyone else could do but I had to do it better. Even if it took me twice as long to get there. My epilepsy is mentioned in my immediate world only when a seizure is bad or results in injury. Otherwise, not. Because this is how I am, I can't picture others with epilepsy not being the same. When I read any posts of those needing understanding and someone to listen, I still picture a person that is standing tall, chin up, in a world that doesn't or won't take the time to see them without the seizures. I really can't picture anyone harping in their real life to anyone that will listen that they have seizures and it really bites. They come here for that understanding and to vent to ones that know exactly where they are coming from. I don't live in their shoes, you don't and they don't live in ours but we all have the ability to listen. And to scroll. Yes, you have to take the negative with the positive. And I'm sure they do. Everyday. Take care! -Spiz

I thank you for your

Submitted by happycat2 on Fri, 2006-05-19 - 13:51

I thank you for your thoughts E_Loner, and the picture you painted of how you see life. One thing I do know is this-in life there are close to 3 million people with epilepsy in the United States, 50 million people worldwide.Â I get an e-mail letter each month from Great Britain called EPILEPSY ACTION it writes about different things about epilepsy. I also read the articles on here, the links people post. Â There are still countries out there that yes, do think epilepsy is connected up to witchcraft, and that isn't the way to go it's negative. Neither is being cruel either. Understanding is positive, so is sharing. We all need friends and I think of the people I know, and keep in touch with here, in the groups I'm in as friends, true friends. Â It hurts so much feeling so alone, that I do know, as I do that's the reality of living with epilepsy when you don't talk, don't share. As I know there are people out there who like you feel it, and see it as you do, and want us to understand that. I thank you for sharing the way you feel, I really do. I feel this way about it-it's never a waste of my time to want to talk about epilepsy. Some people may have families that don't know they have epilepsy, who join places like this, or other places and need to talk about epilepsy kind of like an experiment to see how it goes. That's why I read the posts in different epilepsy groups every single day! Â Doing so helps me to accept my problems, and helps me to understand how others deal with their problems. Â All of us with epilepsy stick together in these groups because we can all help each other more than Drs. help us because Drs. just can't feel what we feel on the inside.Â They can't, they see the hole, don't see the whole that is us away from the office. They can treat us as if having epilepsy and taking up their time is like the bill-it's a debt to be paid. That's something the posters here don't do, why they post, offer what they can, when they can. They make time and do live in the world of reality. A world which gives support. Cat. "Many false prophets are gone out into the world." 1 John 4:1

I thank you for your thoughts E_Loner, and the picture you painted of how you see life. One thing I do know is this-in life there are close to 3 million people with epilepsy in the United States, 50 million people worldwide.Â  I get an e-mail letter each month from Great Britain called EPILEPSY ACTION it writes about different things about epilepsy. I also read the articles on here, the links people post. Â  There are still countries out there that yes, do think epilepsy is connected up to witchcraft, and that isn't the way to go it's negative. Neither is being cruel either. Understanding is positive, so is sharing. We all need friends and I think of the people I know, and keep in touch with here, in the groups I'm in as friends, true friends. Â  It hurts so much feeling so alone, that I do know, as I do that's the reality of living with epilepsy when you don't talk, don't share. As I know there are people out there who like you feel it, and see it as you do, and want us to understand that. I thank you for sharing the way you feel, I really do. I feel this way about it-it's never a waste of my time to want to talk about epilepsy. Some people may have families that don't know they have epilepsy, who join places like this, or other places and need to talk about epilepsy kind of like an experiment to see how it goes. That's why I read the posts in different epilepsy groups every single day! Â  Doing so helps me to accept my problems, and helps me to understand how others deal with their problems. Â  All of us with epilepsy stick together in these groups because we can all help each other more than Drs. help us because Drs. just can't feel what we feel on the inside.Â They can't, they see the hole, don't see the whole that is us away from the office. They can treat us as if having epilepsy and taking up their time is like the bill-it's a debt to be paid. That's something the posters here don't do, why they post, offer what they can, when they can. They make time and do live in the world of reality. A world which gives support. Cat. "Many false prophets are gone out into the world." 1 John 4:1

I thank you for your thoughts E_Loner, and the picture you painted of how you see life. One thing I do know is this-in life there are close to 3 million people with epilepsy in the United States, 50 million people worldwide.Â I get an e-mail letter each month from Great Britain called EPILEPSY ACTION it writes about different things about epilepsy. I also read the articles on here, the links people post. Â There are still countries out there that yes, do think epilepsy is connected up to witchcraft, and that isn't the way to go it's negative. Neither is being cruel either. Understanding is positive, so is sharing. We all need friends and I think of the people I know, and keep in touch with here, in the groups I'm in as friends, true friends. Â It hurts so much feeling so alone, that I do know, as I do that's the reality of living with epilepsy when you don't talk, don't share. As I know there are people out there who like you feel it, and see it as you do, and want us to understand that. I thank you for sharing the way you feel, I really do. I feel this way about it-it's never a waste of my time to want to talk about epilepsy. Some people may have families that don't know they have epilepsy, who join places like this, or other places and need to talk about epilepsy kind of like an experiment to see how it goes. That's why I read the posts in different epilepsy groups every single day! Â Doing so helps me to accept my problems, and helps me to understand how others deal with their problems. Â All of us with epilepsy stick together in these groups because we can all help each other more than Drs. help us because Drs. just can't feel what we feel on the inside.Â They can't, they see the hole, don't see the whole that is us away from the office. They can treat us as if having epilepsy and taking up their time is like the bill-it's a debt to be paid. That's something the posters here don't do, why they post, offer what they can, when they can. They make time and do live in the world of reality. A world which gives support. Cat. "Many false prophets are gone out into the world." 1 John 4:1