To share or not to share. It is a strange dichotomy for me since my book is out and many people have read it; strangers know the most intimate details of my life.
In real life, with people standing in front of me, I am unsure about what to share. Some of that comes from my life experience; a family that ridiculed and pooh pooed anytime I was ill. It also comes out of the experience that many of us with chronic pain have, the veil of invisibility. If we do not say "I am in pain right now and cannot..." no one knows we are in pain and cannot act in a way that feels understanding or accepting.
I mentioned this to a friend, I do not really know what to say and I am afraid to say it, expecting disdain, definitely non understadning.
My friend says to me, "Yes, you do give off the impression, do not ask me." I get that. I do not want it to be the main topic of conversation, I do not want to be seen as 'sick' or unable. But when I am unable I have not opened the door to saying "I cannot right now." I have also cut off a line of intimacy, of allowing someone into my life. It is hard to complain of being alone when you may well have set the ground rules for nothing else.
Many of us write in support groups, posts, blogs, about how bad the pain is, how hard today was, how they are mis and not understood.
Is it us? It is easier to blame the pain, to blame others, then to look ourselves in the face and ask - "Is it me? Am I setting the line in the sand that makes it feel it should not be crossed?
It comes in two colors: talking about it too much so people do not want to talk to us after a while because it is all all pain or negativity or trying not to talk about it all so the other feels a wall that should not be breached.
I have yet to find a good middle ground. Mine is the wall I think, no, I know - I do give out that vibe, "Don't ask." I try to hide taking the pain pill, I withdraw even further when the pain is bad. I do not give others a chance to show they do 'get it." When they have shown me I get hot, embarrassed, uuncomfortable. The vibe sent out is not 'thank you for understanding. I am so appreciative of your empathy and letting me know you see the pain and my struggle." It is more "Oh please let's not talk about such things."
Sometimes I write to talk to 'us' but also to talk to me and set myself straight.
I just wish I listened harder to my words.