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Originally Posted by Leesa
My definition of support is just try to be understanding. Realize that I cannot do the things I used to do ~
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That's good, even if a little imprecise. You don't think normies try to do that? Understanding us/how we feel is a little (little?) like trying to describe a sunset to the blind (and I've actually tried that). Do you explain to folks what you want/need/expect, or are they just supposed to know?
I don't ask any of these questions sarcastically. I ask them rhetorically to elicit some dialogue/introspection.
Something I've noticed is that when someone here on NT says/suggests something, it's recieved quite differently than when suggested by a normie, even if essentially the same. Have we become prejudiced/jaded?
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and PLEASE do not offer suggestions as to treatments as I've had them ALL done.  if YOU have heard of them, so have I ~ I don't live under a rock. 
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I get that, but I also think it comes off as a little arrogant. I don't live under a rock either, and I try to stay current with my situation, but I sure don't know everything, and I don't really care where/from whom some suggestion comes from if it's something I can use or pass along. E.g., I'd never heard of that scrambler therapy before I posted about it the other day, and if it weren't for a normie who knew somebody, I'd have never known about/found my first CP support group many years ago.
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And unless you REALLY want to know how we are, don't ask. LOL You might get a long drawn-out diatribe of every painful spot on our body!
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Yeah, I went through that phase, and watched as friends & family deserted me like rats from a sinking ship. I learned from that, and things (relationships) are much better now - even if I'm not.
My main point is, normies may not understand and never will, but it's up to us to educate them - as best we can, and as best they can understand - in order to give us the support we need/want. I have some books on disability etiquette; they were written to educate normies how to act/interact with disabled persons without offending. Something like this one:
http://www.unitedspinal.org/pdf/DisabilityEtiquette.pdf
Yet the only thing I've seen for chronic pain is things like this:
http://www.cafepress.com/+pain_warning_posters,95421429
Maybe we need to put some compassionate thought into something better; something to educate normies about supporting us the way we need, if that's possible. [As the Japanese saying goes:
Fix the problem (in this case, the "support gap")
- not the blame.]
Doc