Anyone else seen this site? I'm just beginning to explore it. Deals with issues many of us with PN deal with. The idea that because we may *look* fine means we can't possibly be *that* sick or in pain....or....fill in with your own.

http://www.myida.org/pubs.htm

and, there's lots of good basic info in it.

I do get a bit well, 'queasy' when any 'non-profit' site essentially SELLS its key info tho. But, I have that 'feeling' about any non-profit which essentially withholds information EXCEPT to contributors or members.. This is in part because I used to be a gummint grant administrator in a prior life and the standards can be definitely different to members for certain programs than for non-members. I was careful in my oversight to ensure than participants in gummint sponsored programs were more democratic, and not exclusively 'members'. I balk at non-profits who will only SELL info, with out a good sneak peek. IF info is really good, and beyond basic then, maybe would I want to buy more! Leading to a membership. NORD is an organization that gives freely and also has a quality rating by non-profit givers, for an example. Some other organizations relating to our PN and auxillary issues aren't so open nor forthcoming.
NORD's 'theme quote' is aptly: If you hear hoofbeats it might be a zebra? Not a horse.
The Pain Foundation that I believe Alkymyst cited in an earlier post is a super resource for all kinds of pain! And the folks there are doing THE key researches WE need to get diagnosed and treated properly! This is one dynamic group that would get bucks from me...when I ever win that Lottery or the like! [As would NORD & here if asked] I don't know about you, but I find I have to be a lot more parsimonious these days, where I used to contribute to all sorts of good organizations, I have to be far more picky and careful about who I give any bucks to ...be it membership or otherwise. I want as much bang for buck as my few bucks can give.
Think of it this way? IF an organization provides an annual financial report on it's site and a full list of board members and consultants [current and past] and you feel that they are actually doing what they state as a 'mission' -by all means GIVE! Should info be absent, ask for it? Even a $10. gift should receive the courtesy of a reply. Hope this is useful a bit. - j
And YES we look 'fine'? But, those eyes are a bit drawn, and the mouth has well, new 'lines' around it, not to mention that hardly detectable 'teeter'?

This was a huge issue in my anorexia recovery. When you get healthy on the outside people say and assume you are well. That is where I had to use my voice and tell people how they can help me or what I am feeling inside. I had to learn to not use my outside to show my inside feeling. With my pain I have used those coping skills about telling people how they can help me,reaching out for support,etc. There are always stupid people in the world who say stupid things including family,friends,docs. It can be frustrating but I try to focus on the healthy supports. Even at a doc apt there was a man who had cancer but it was in remission but was there for a test and was maybe 70 I don't know anyhow he asked why I was there and said well you look healthy and fine. It is frustrating and this is from a person who has been through a lot. I think people mean it as a nice thing so I try to take it as that. At the same time it makes my pain feel unheard. Does that make sense? I guess I try to remind myself of the facts and the people who know me understand more.