I'm really sorry you feel so misunderstood and hurt. You are totally right, I have no idea how it feels and I'm sorry if that pain has felt diminished. I guess people were trying to help but got it wrong. My best friend is in a similar position to you and eventually found some degree of peace about her medical facts but it still hurts her at times. I guess it always will, I just hug her extra hard at those times so I'm sending you a hug too.