Responsive communication with spouses/partners important for health of RA sufferers

This is so serendipitious. I have been having so much trouble communicating with my immediate family about my illness. Ironically, they are very sympathetic whenI'm 'flat on my back' with pain and loss of limb function. But they think I'm 'normal' when I'm up and about and place more demands on me than I can manage. They simply don't understand that because the pain isn't visible (swelling, etc) - it doesn't mean that it isn't there. I have now given up and often feel utterly isolated - even in a room full of people. It's a very lonely place to be. I would really appreciate any advice how to communicate about what is a difficult and complex condition.

My wife will not touch me since she was diagnoced, with all the intimacy responses taht implies. When I try to discuss this with her she balks, gets angry, and refuses. I myself live with another auto-mmiune disore=der known as Secleroderma, which predates her diagnosis, so the "problem" is not in empathy or understanding of living with pan/fatigue/uncertainty/etc.

She move away from my touch as though it's painful. Whne she gets home from work, our childre hear the garage door open and go hide, "Uhoh! Mom's home." She then comes in and starts in on me, I usually end up "having to run an errand."

She refuses any medications but NSAIDS because they "make her jittery."

She never showed any interest in learning about the course of my disease, never took up my doctors offer to sit down with her, has never been to my many appointments or hospitalizations.

I know it sounds strange but really we otherwise have always has a happy marriage!!!