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Posted by PatG on November 30, 2000 at 20:44:47:

In Reply to: Re: family, friends and RA pain posted by LJ on November 30, 2000 at 13:07:32:

: : : Newly diagnosed with RA, I'm already seeing that family and friends have misperceptions about the intensity and extent of RA pain. I've had to beg off a few family occasions because of the pain and I think they are beginning to view me as a WHINER, a hypochondriac. This is very upsetting on top of the pain. Anybody have suggestions or whatever on this topic?

: : Dear LJ: I am sorry about your situation. Perhaps you could get a pamphlet from your doctor's office explaining your condition. I have ostheoarthritis of the spine in neck and low back which pain spreads into my legs and arms. People often times don't understand chronic pain. One only understands if they live it. I know of another person on the boards who goes through the same thing.
: : Please feel free to post or vent here or on the back board site (a lot more chronic pain people are there, too). I'd be happy to listen. Take care, PatG
: : Thanks for responding, Pat. Have you found an effective way to say, "thanks, but I'm not feeling well" in a way people understand that it's real and you're not trying to get out of something? How do you keep a positive attitude in the face of pain and an uncertain physical future? LJ
Dear LJ: When you have a "hidden disability", you really do get a lot of mis-understanding. (Parking in "wheelchair spots"--I'm always getting yelled at!!)

I explained to those who are close to me that I have spinal arthritis. I am and always was a very hard worker. I thrived on work. Now, though, with this condition, I cannot do what I used to do. You know me, and when have I EVER tried to push my responsibilities on anyone else. NEVER! Now, with this condition, you have to understand that there will be days that I just cannot do it. I will have good days and I will have bad days. That is the way it is with my condition. That is what I said. LJ, the best way to do this is inform others of your situation BEFORE they ask you to do something. That way, it doesn't look like you are copping out on this or that. They already know before they ask you that they may get turned down. You WILL have bad days and good days, and that is the truth. Also, when you speak with people, I would suggest you do it firmly, but nicely. If you speak the way my mom used to, in sort of a "wishy washy unsure" type voice, then it seems to leave them room to try to PUSH IT, if you know what I mean. You will have to be a little firm, to start with, so they know you mean it, but always be nice.

Regarding the future, I take things one day at a time. I do not look too far into the future. I just "don't go there." I read my Bible almost every morning or I will watch something inspirational on t.v. (or lie down and listen, if I cannot sit up). I pray and I go to these message boards and read and write to others. In fact, I got to these boards when my life really took a hard turn this past summer. I was so depressed, I came to these boards and I encouraged others, if I could. The best way around depression is to help others, even if it is only a few words, like I am doing with you. Teaching people how to live with this stuff or how to handle doctors, etc. Sometimes, I just read other "posters" messages on these boards, and see how they relate to each other. I read about other people's problems and many are worse off than I am. I try to keep a strong faith, but I don't think much about the future of my body. I feel that I have done well for now, for today. Tomorrow will be another day and I will handle that day when it comes.

I hope I have helped you in some way. It is always hard when you are writing someone, in that they cannot see your facial expressions, etc. Write again, but know that these boards are getting discontinued and that you may have to start posting on their new site. That is where many people have already gone. Take care, PatG

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