Yes, Sadieone, all the time. On the outside I just look like an overweight, 50ish woman who is healthy. This is really frustrating because it's hard to explain to them.
The other day a lady in my office was critizing a man, whose wife works where we do, who had been dx with Cancer about how he seemed to just accept what the doc said and has gone down hill very fast. She's very religious and keeps saying "don't claim it". Well, I listened to her for a while and then I looked at her and very calmly said "Well, you've never been told that you have a disease that could kill you. And until you have you have no right to say how someone should react, because you haven't been in our shoes". She continued to try to get me to see her point, but I insisted with my views. The next day she came into my office and said she was sorry, she didn't mean to sound like she was "downing" me or implying that I had "given up". She knows the struggles that i've been through for the past 3 years and knows that I'm not "faking it".
I get so tired of trying to explain why I can't walk straight, or why I can't go out after work, or why I'm so quiet all the time.
Otherwise, I guess I'll just accept that it could be any one of the illnesses and it just doesn't matter; however, my rheumy insists that the lupus is under control. I just wonder some times if he is just placating me or if I'm losing it. I'm in pain all day, every day and the only thing he will prescribe for me is Darvocet. I might as well take a drink of water for all the good that does me. He makes me feel like I'm a drug seeker so that I've quit asking and even telling him about things that have happened between appointments. I just feel there's no reason to mention anything, he doesn't listen anyway. Maybe it's time to find another doc.