I was wondering.

I got to thinking.. everyone has their own ways of dealing with pain and chronic illnesses. Eventually overtime, you tend to build up a tolerance to pain and you try to see past it.. for me, even if I can't work or lead a steady social life, I still try to get up and get out, put on make up.. and sometimes it makes me feel better about myself. I think for some of us, it's a way to feel a bit more normal despite the illness that attacks our body and tries to keep us down. What bothers me sometimes is people that don't understand, and I know nobody else is going to understand, fully.. but it bothers me at times, if I'm out or with my mother, or friends and someone says.. "Oh you don't look like you're sick.." or "You look nice, you must be feeling better." I do have days where I don't go anywhere, don't bother with makeup... but people seem to think that you should look like you feel horrid everyday. My mother, and the people around me that I live with, are the only people that see me when I'm my worst... when I can't move because the pain is too bad, or I'm too tired, or I can't move my head at all because I want to cry from the pain. Those are the people who really matter, and I know that.. but I just wish that people would be a bit more understanding and a bit more open minded and realize what something like lupus and FM can do to a person.
I think that the people that endure this disease, and get out of bed despite the henderence are very strong people.. and I wish you all well.

Rebecca,
My family's answer was avoiding me completely when I was in pain, sick or suffering. They thought I was just faking it. Later in my illness, during an overnight stay, I went into horrible body pain and was screaming and crying and really really bad and I think it finally hit home with MY parents at their age, that I was really sick. They were very concerned that the ER could not and wouldn't dx anything and just treated the pain. The ER knew the problem wasn't simple. My parents have come to realize that. My kids are kids, they just don't think, my youngest is more compassionate because he has epilepsy and other health problems, but when I got my two neck surgeries, they couldn't understand why I was crying in pain in bed and sleeping alot and why I couldn't do what they wanted me to do. They just don't think sometimes. On long term illness, my kids do not want to see that I have a long term illness, at least they don't want to talk about it or anything, it really bothers them, so they know they feel it, forgetting or taking it lightly is just their way of dealing with it and I've learned to actually cherish that, because it helps me to forget, and though I am still sick and they still see me in pain and can't do what all they want me too and have no energy, I've learned to make jokes with them and let them keep it light. In their hearts they know and I'm glad they at least still try to involve me in activities, even if it is housework or homework or whatever it is. I've had them ignore me for a while and that was not good, giving me the "you should be in bed relaxing" crap and shutting the door and shutting me out of their lives. That can be bad too. 18 year old boys are like no brain! Mine is 19. My son said to me when I couldn't do what he wanted "but you're ALWAYS sick!" and I said back "yes I am, and that is something you just have to accept, I do what I can" and maybe that is what your son needs to hear. That it is work just getting out of bed and that he wouldn't want to feel like you do. Try encouraging him with all the possiblities of what he could be and do if he went to school or worked. Try watching a movie or two with him that might inspire him to be "all that he can be". Also remind him that you can't support him forever and that you once worked too. Doesn't he want to be a man instead of a kid and have his own money? The first thing I did is cut back allowance to a bare pittance. That made my son realize that if he wants something he's got to work or go to school. I know it hurt you, but he doesn't want to face the fact that you are sick, it hurts and scares him, so you need to gently remind him that you do have some health issues, whether he wants to face it or not, and that they prevent you from working or you would be. Remind him that he has his whole life ahead and it can be a great adventure, find out what his dreams are, real dreams deep down and help him to see that he can work toward these things and live a better life than you are, with more money and toys and travel, and maybe take care of his old mom someday! I am in the same place with mine only its a little different. But you have to remind them over and over again that life is full of great possiblities for his future because somewhere these young men are really getting the message that there is no future for them and they can't accomplish anything or be anything and seem to focus on the obstacles instead of the prize. Look at travel magazines with him, all kinds of things like that, and help him to see that there are many ways for him to do something cool and fun. Peace corp is interesting. I may talk to my son about that, if they will take him. I want him to see the world, I think it will help him to grow up. Well, I got to go. Take care and let me know what happens. Just remember, at least he IS talking to you and letting you know where he is at honestly and though its not what you want to hear, don't take it against you, he's just protecting his own feelings and fears of losing you by denying or downplaying your illness, its how he copes, and I can't say its necessarily bad. It would do him no good to worry constantly or pity you. Take care and let me know what happens.

Hi Rebecca, Didn't have time to read the replies above . . . but wanted to send you a hug. Yes . . . people think I look really healthy with my rosie cheeks. "Oh, you must have been out sking!!" or "You look so good, you must be feeling better today" . . . I just give a little smile and say "Thank you" and let it go. I think the ones who really care about you can read you eventually. But the kids are different . . . especially boys . . . they NEED you to be well, therefor you ARE well. I have found that I don't need to 'make' people understand. I just do what I can do and I leave the rest. If I do need to excuse myself early when I'm tired. I do a lot of start and stop at home so I can get things done. And that's ok . . . you can actually accomplish a LOT like that. Good for you . . . putting on make-up and wearing attractive clothes IS important to our sense of well being. Go for it . . . and don't worry about getting people to understand how you feel. They can't feel your pain and they can't see your pain . . . so it IS really hard for most to understand. Its OK. I'm off to put on some lipstick to go with my rosie cheeks!! Blessings!

Thank you all very much for the kind words.. I've really needed them, I'm having bad flares with both lupus and FM...Even down to using the good ole' cane.
Thank you.