Hi I ma really noticing that people just do not want ot remain close with me. They start to then when I start having seizures and I especially try to open up and share about it. They totally go another direction. Without even communicating with me and my partner.

I really just do not understand. It feel like a on and off switch for most. While I value true friendships look beyond others health conditions they turn the other way.
One woh has some major health issues I have done much to support. When I shared and set a oundary. Did not hear from them for a few weeks emailed and even called them. Asking how are they is everything ok.

To get the following " I am choosing to nurture other friendships and spend my time else where" I just felt hurt.

How would others hear this when you have stepped up to be there for them in a period of knowing they needed help and support?

I think I just feel kinda lost as to why friends really can not feel they can remain just that true friends ewven when things are not "normal"

Would enjoy hearing others gentle feedback and/or expereience of this issue

Thank you all I feel grateful to know others here understand.

Happy Thanksgiving to all, Cedar

((((Cedar))))

Here's sending you lots of hugs and frienship. I understand very well how you feel. My brother, his wife, and many of my immediate family have never accepted me because of my E. They look at me like I have some kind of contagious disease when the real problem is they just are afraid of my E. and they need to learn about it.
Even today at my one job I work I have always told students and staff about my E. but the new supervisor cut me down and told me: "Maybe you shouldn't be working this job" When I heard that from her, I had a meeting with her and she called me a liar. I then told her I was willing to take a lie detector test and that's when she backed down. I plan on reporting her to the EFA especially since there are students that she's working with that have E just like me.
I ask myself the question if maybe some people have just gotten more cold hearted over the yrs. Just remember I will always consider you a friend and I'm her for you anytime. Here's wishing you well and May God Bless You!

Sue

Thank you Sue, I really appreciate your words of kindness and friendship.
I appreciate your friendship, I truly do! I just shared some of how I felt with a friend who is also a support person in my wellness. She said "you are genuine and it is hard to find that in people." I think when things feel too close of hard they pull away out of fear, lack of education.
I know that my issues sometimes feel like a lot. But I also know trust is hard for me, so just when I feel safe and a person pulls away without sharing why. My trust goes POP! Oh well! Will take time again.

I appreciate your Hugs and support. I feel we have shared much over the years here so thank you and may you have a wonderful thanksgiving.
Blessings of Peace, Cedar

Hi Cedar,
You are a great friend and I couldn't agree with you more that there is a lack of education, understanding, and much fear when it comes to epilepsy. In all the yrs. I've had epilepsy I couldn't understand the rejection from family and friends but as they yrs. went by I see it made me a stronger person emotionally and it has helped me greatly working is Special Ed. with students who have emotional or medical problems. I can relate to them much better than there teachers or counselor becaue I've been in their situation.
You are a wonderful friend and a true blessing to me. Here's wishing you a Blessed, Joyful and Happy Thanksgiving and Life.

Sue

Cedar I am sooo sorry this is happening to you. Believe me when I say that I know exactly how you feel. My best (and I mean BEST) friend (the one that knows you inside and out, the one you and your family spend vacations with them and their family, the one where just you two go on "only girl" weekends and finally the one you have spent most of your life with other than your spouse or family members)left me w/o a word. Just all of a sudden no calling, no getting together NOTHING. Before I knew it, she was 7 weeks pregnant and when I mentioned doing the baby shower (which we always planned since I would be the "aunt" of the baby) she said someone else is already taking care of it.

Then nothing until the person throwing the shower, a friend of sorts of both of ours, calls and ask me for help with the shower. Only because it was a day away and she had sooo much to do still. My heart just sank. I helped only thinking that I would be able to re-connect with my best friend, but to no avail. At the shower she acted like she didn't even know me. I had bought so many baby things for her way before she even go pregnant. It was something we did, go shopping for when she became a mother.

It has been almost four years now and there is no connection. I heard through another friend that she lost a baby about three months ago. I didn't even know she was pregnant again.

I did get an email about three weeks ago saying that we should get together for dinner soon. But I have heard that before...so I can't get my hopes up. The thing is, is that I love and miss her to death.

Sorry to hijack your situation, but trust me I know exactly how you feel. I really hope things get better for you. But until then just know that we are here to talk.



M

Cedar - Why is it so hard? I think it's so hard because we have to face so much physically and we have to face so much emotionally.
I sure did. I was dumped by my friends and even my mother wrote me off. That was in 1990 and I still haven't gotten over it. I don't think I ever will.
I'm sorry this is happening to you. I'm sorry it happens to all of us.

Cedar,

It is hard on a person at a time like this. I have lived for over 40 years with Epilepsy. Because I have had in so early in life with it I feel as though it has made me strong.

Sure in young age it hurt alot but I did manage to get through it. At this time I think anyone on earth has a handicap of something in their life weather it comes early or late. With the experience of Epilepy helps me to accept others with their sititutions with open arms.

One other thing I feel is I had rather have Epilepy rather than many other handicaps.

My thoughts and prayers are with you.

Darlene

Hello Cedar,

I have found over the last 3 years since the E got much worse, that those EX-friends who call themselves spiritual, and open and non-judgemental have been the worst in their treatment of me.

They believe that epilepsy is a mental illness...and no matter how much I apologised (which was something I shouldn't have to do), they retreated more and more.

If people behave in such a manner then they were never friends anyway, and probably wanted something form you (support or whatever) and when it somes to them supporting you, it doesn't happen...

Hon not all people are like this, and those who are real friends show it quickly and easily...offering and backing up with any suport they can give...So don't give up, as there are real people out there, and they will befriend you for who you are not typify you for a brain disease that yu have no control over...

(((((HUGS))))) hon...

Thank you all for your kind words and personal sharing. I do agree it is a hard thing to have to experience and I feel lonely someof the time. I just can not understand where peoples hearts are. But I quess that is the difference between many people.

I also think of those who find it hard to be my friend whether family or a friend. How much they tend to take for grated then when somethnigs hits close to home they find it real hard.

So I just have to hold us all who deal with a disability, handicap or chronic condition like Epilepsy that we will be the ones who help those down the road from our life experience.

Thank you all for being here and being kind. Need that in this world.
Blessings of Peace, Cedar

((((((((((((Cedar)))))))))))))).

I agree completely with Rhiannon's post. It's sad and appalling how much ignorance is still out there. I personally think EFA still needs to do something about this, and as much as churches preach "love thy neighbor," many of them seem clueless about true support and unconditional love.

The best thing you can do is to continue to be yourself and educate people around you. My own parents would have nothing to do with my trying to talk about my epi for over 20 years--until a reaction to Tegretol nearly ended my life. Then I forced them to listen, and today, they'll both tell you they're glad I did.

Surround yourself with supportive people--whether online or in your "real" daily life, and preferably both. There are compassionate people out there. Join a local epi support group. You'll be able to meet others who, just as we do, know what it's like to live with epi and deal not only with szs but all the effects of treatment. Attending the meetings regularly may even help you with sz control.


(((((((((((((HUGS))))))))))))))), and good luck!

LIZARD