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Old 09-30-2018, 01:48 PM
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Just joined today. I am have a hard time coping with my problem. I have gone 2 years without a convulsion but people who I thought were my friends still do not want to be around me.
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Old 09-30-2018, 02:39 PM
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Hello and welcome graylydophin
It can be difficult to feel that way as many of us here can tell the same story or similar story to yours. I find myself alone much of the time and I think it is because I don't make much of an effort to socialize. I'm not married and don't have any children so really don't fit in with most people. I wish you the best and spend time here looking for support it's a great place. Thanks, Jeanne
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Old 09-30-2018, 03:22 PM
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Thanks for the reply. It is nice to know that other people have gone through what is happening to me.
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Old 09-30-2018, 03:22 PM
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Hi graylydolphin,

Welcome to the forum! I understand how you feel. It took me a long time to understand my seizures and what caused them but I learned a lot here from everyone
on the forum. Many of my family members don't want anything to do with me and won't accept the fact that I have epilepsy but I have tried to ignore it because I've
had brain surgery to reduce my seizures and I found out I was drug resistant so I started using the medical marijuana (cbd oil) almost 3 yrs. ago and that has reduced my seizures a lot. I figure if my family won't accept me that's there problem after all there are many famous people out there in the world that have epilepsy and one of my favorite is Elton John professional singer. Also I work full time and I teach students in public school along with staff about epilepsy every yr. so they won't be afraid when they see me or someone else have a seizure. I think the biggest problem is epilepsy is one of the oldest medical problems but they haven't taught people much about it. I wish you only the best of luck and May God Bless You!

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Old 10-01-2018, 07:56 AM
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Hey graylydolphin -- welcome to CWE!

Have you found out why your friends (or former friends) have gotten scarce? Sometimes people behave out of fear/and or misunderstanding, and all it takes is a little education to bring them around. On the other hand, if you feel like they are a lost cause, it might be time to find new, truer friends. Do you have opportunities to socialize where you are?

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Old 10-01-2018, 09:14 AM
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I have talked to these people and they are to busy to do things with me. I attempt to talk with them about doing things and the type of answers I get are I am busy but will call you next week. The problem of course is the call does not come. I call them back and they say they are sorry that they forget and wil give me a call next week, but they never do call.
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Old 10-01-2018, 09:16 AM
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Hi gd, welcome to CWE.

There could be a lot of reasons why your friends have seemingly moved on. It could be related to the single seizure episode, it could be other things too.

My wife lost a very good friend more or less after having a fairly nasty tonic clonic out in public at a restaurant during a lunch with her friends. It totally freaked all her friends out (wife fell and had a nasty fall). Honestly, I lost a lot of respect for the "good friend".
New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

Would you like to help support this forum?
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Old 10-10-2018, 04:28 PM
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Hello & welcome. People often do seem to freak out, and/or not know how to react.
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Old 10-25-2018, 08:22 AM
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I found that the coworkers that witnessed my grand mal have always been there but it's not likely they will quit over that.
It is different with others because they think it is a cloud over your life. Since unlike coworkers that don't see you enough to get that it doesn't make the impact how they perceive you to be. People think it changed you and makes them feel like they don't know how to talk to you.
I found with those that don't know how to react it is best to plan an event and be yourself (nothing worse than working hard at being yourself). By event it could be as simple as dinner out at somewhere new. Somewhere new is always best because it is about the experience of a new place to eat and doesn't feel like a place to talk about anything uncomfortable.
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Old 10-28-2018, 02:34 AM
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Graylydolphin, welcome, and I sure hope strength grows with others in this field to talk with. I remember in my early days, my girlfriend of 5 years could not deal with me and seizures. After my first surgery, after healing well enough to go home, I chatted with her and from there she shifted away. Rough but being connected with others in this field, we can open with one another, making days better at heart.
Each day has a picture the world would like to see
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