Hi 72daywmn,

What kind of support or compassion are you expecting from these folks?

I think your reflection is spot-on. I've seen it with others, and I've been there myself.

How do you want them to respond? How do you think they should respond? IOW, again, what are you expecting from them?

The facts are that most normies don't know how to take us (how they should act/respond) - we scare them, and they react out of that fear.

I've been involved in pain support groups almost as long as I've been in pain. I've met people - "drama kings/queens" - who are so wrapped up in their pain that that's all they ever talk about (in-group or out), and if they can't monopolize the conversation - every conversation - and be the constant center of attention, then others "aren't being supportive." I've met others who came to meeting after meeting for over a year and never spoke about their pain once (like internet lurkers) - though a few of them never shut up anyway.... and everything in-between. That's all ok, because part of - part of - the function of support groups is to provide a place and people who do/will understand, who we can vent to when we need to.

Outside of support groups all bets are off. Normies, with as much love, compassion, and understanding as they possess, just aren't equipped to deal with us. And they know it. Sometimes we forget.

After I realized I'd driven away my nth friend, I took some time to analyze what happened. I realized that when people (normies) ask me how I am, they don't really want to know (Yes, I was dumb enough to tell them - in great detail). I don't do that anymore. I used to talk about my pain, feelings, & frustration openly, and watch those same looks. I've become more selective about what I talk about and to whom in social settings. There are some I can talk to about these things, and some that I can't, but that's not their failing; I can't expect everyone to be the same or understand. I'm careful not to bring up the subjects of pain & health, and I talk about other things instead. If others ask, I'll start cautiously and gage their reactions, and back off when I sense discomfort. I don't need to talk about it as much anymore, and when I do, I have certain people & places (like here) I've developed relationships with for that particular purpose.

The result is that I'm easier to be around and having more fun. People aren't afraid to be around me anymore. I'm getting invitations again. I can't always accept them, but folks aren't concerned that I'll be a wet blanket. If I have to leave, I excuse myself with a smile (or grimace), and they understand.

Everyone's needs and expectations are different, so my experience won't necessarily apply to anyone else, but it's working for me.

Further reading:
http://www.chronicpain.org/articles/tsocp.html
http://www.medpagetoday.com/Blogs/21266?

Doc