I think its a tough line to walk between people bugging you by either constantly asking how you are and if you're better and having people never ask. I struggle with getting frustrated when people ask all the time- getting frustrated doesn't help anything anyways. I also don't want to seem like i'm complaining if I always answer - no, still hurting - so i usually give the half-hearted, yeah, i'm ok for an answer. Thankfully, I don't think we've lost any family/friends because of this, but we're only 6mo -9mo into it. My moms good friend has chronic pain/neck muscle problems, so my mom knows how hard chronic pain can be and how all the meds/lack of sleep can weird us out sometimes. I'm lucky in that respect. That being said, you're right Grom - people do struggle with the "well, you look healthy, how come you say your sick?" all the time i think. The people i work with have "joked" about that, but i think my boss is starting to understand how draining it is NOT to know when (or if) you're going to feel better, when you'll be able to live your old life. enough rambling from me.
Time to be constructive: I think the best way to handle the people that have left/stopped being in touch is (if you're up to it) - call them and ask how they are, and tell them how you miss seeing them, and that even if you are always unable to go out, you appreciate the invite. If they continue to duck your phone calls or just don't call back, let it go- you tried, and thats all you can do. (I know thats easier said than done). Lets all face it- we may not feel like going out, may feel like crap, but getting out and about might help take your mind off the pain, and at the very least, give you a change of scenery.
Oh- i sent the "spoons" to a couple of people, and got back (no kidding ) - "Oh, you have lupus??" I just sat there dumbfounded that they didn't get the point. Oh well.