yes, i totally agree with you. there should be more awareness about this disease. but unfortunately this is a very misunderstanding disease and its different from one person to another. everyone knows what is cancer, but no one knows RA which is even worse than living with cancer. but how is it possible to make awareness in people. is there any way? i wish it would happen one day so we can talk about RA openly and everyone could understand what we exactly go thru.

Agreed. Unless they can see it they don't believe it. If you break your arm the entire neighborhood brings casseroles, if your life is turned upside down by a life altering disease that involves unbearable pain, well you either get the eye roll or the "at least you don't have cancer". Yes, I'm grateful for that "are you" I feel like asking these totally healthy people. And with these drugs I take to get thru the day I most likely will have cancer too, will they be happy then? I'm sorry for all who have suffered from cancer but it's over one way or the other, this is a never ending battle.

Ugh, don't even get me started on this subject or the damn will break!

Sue

I don't talk about it because there is no compassion. I was literally told by a coworker - who had this information because she was a good friend before I got sick - to stop taking my medications because they were making everybodys healthcare expenses go up (as in our premiums and copays).
I also don't talk about it because people don't get it. I can explain it until I am blue in the face and they act like they have never heard me say any of it before. Or like my boss telling me to smile more - sure, let me run you over with my truck, if you smile more, I'm willing to give a go! Or I was off on fmla for a month, came back, swear to God people thought or expected that I had been cured!
I am just finished with intentional ignorance and thoughtless carelessness! I would never talk to people the way others have talked to me since I have gotten sick. Appalling! Now did you say I get a stick of gum?? :)-

MarkusB
Do you have any thoughts on what we can do, where to start, etc. I agree and am more than willing to get involved -

suera - my brother said exactly that " at least it won't kill you" -
Peace
Bluedogs2

I had someone tell me that I seemed to be walking "funny" and was there something wrong.....DUH !!! Noo I always walk this way...So I took the time to give her some info on r.a.....Oh i have that same thing in my wrist...must be carpal tunnel..... I ignored that... About 1 month later she came to me and said she understands more now because her daughter was just dx. with r.a. .. Now she wants more info from me... Which I will give her...no problem there....At least 2 more people will be more informed...one because she has it and the other because she is the mother....
Hoping for pain free days for all of us...

51percent -

Yes - I know. My brother is so wrapped around HIS "stuff" that he can't see anyone else. Pity to, I have watched his friends turn their backs over the years -

Sorry to vent - But yes, I am very aware of what could await. I spent several years in southeast Asia, in the woods with just a very few others looking for trouble and remember well the stark fear of a bird taking wing - this we deal with scares me even more - I can feel Mamabluedogs2 reach over every so often at night and touch my chest ...we don't talk about, but I know what she is looking for
Be well and Peace
Bluedogs2

I have had rheumatoid since I was 23 years old (currently 42) .My experience has made me much more compassionate and sympathetic towards others suffering. It has also taught me that just as others do not understand my disease, I must realize that I do not know what diseases they are hiding. Once aftet being told one too many times that I was TOO YOUNG to have rheumatoid I replied, " apparently God doesn't agree." That shut them up.
I have had my co workers and boss "forget" that I have RA and make fun of me. I hope that each of us has a solid support of friends aand loved ones who believe us even if they don't understand.

I have had rheumatoid since I was 23 years old (currently 42) .My experience has made me much more compassionate and sympathetic towards others suffering. It has also taught me that just as others do not understand my disease, I must realize that I do not know what diseases they are hiding. Once after being told one too many times that I was TOO YOUNG to have rheumatoid I replied, " apparently God doesn't agree." That shut them up.
I have had my co workers and boss "forget" that I have RA and make fun of me. I hope that each of us has a solid support of friends aand loved ones who believe us even if they don't understand.

Worse yet, I have a friend who has another friend with RA. He takes an aspirin for it and golfs, jogs, does everything he did before RA. To my friend I look like a big baby, hypochondriac with all the meds I take and still on a good day grocery shop without leaving my cart full of groceries because I can't stand in line another minute and that's about it for my activities. I say nothing to anyone anymore. Even my pastor when I told him why I couldn't help cut down some trees on the property. I explained how 10 years ago I couldn't but now with RA tha's something I only wish I could help with. His response, "so what time can you be there?" I give up! I agree with the other poster though, I think I am a much more compassionate person so that's a silver lining as I never want to minimize anyone the way I have been minimized.

Markus I totally get it.

For me I was raised to think people who complained about not feeling well were whiney hypochondriacs. So it has made me white-knuckle it and grin through clenched teeth too many years to count.

It's horrible how I treated myself for so many years, downplaying my pain b/c I didn't want to be thought poorly of.

I think it is an act of self-love to admit and acknowledge that I am in pain and to take every measure I can to relieve it.

This is new for me to do this.

I hate, hate, HATE the "at least it's not (fill in the blank)" - it makes me want to scream.

I think the comment that hurt the most was the friend who said "I knew someone with that who 'cured' it with diet and exercise."

I've mentioned that comment before so I'm probably a broken record - but it really hurt and burned into my brain b/c it makes me think that's what others think....."if she just lost weight and ate right she'd be fine."

It's irrational to think that way I guess, I don't really know.

Oh, someone else said "you have RA? I thought that was just a hand problem."

Shaking my head............

And yes, RA most certainly CAN kill you. I have interstitial lung disease (lung fibrosis/scarring) which is caused by the RA. It's not progressing right now (I get regular CT chest scans and take pulmonary function tests to monitor it), but it could definitely kill me, without question - if it started to get worse - there is no way to predict if it will suddenly rapidly progress or not....

I've rambled enough, just wanted to add my voice to the chorus of "AMEN's" here.

I was just diagnosed with RA so I have a lot to learn but I experience the same misunderstanding having Sjogrens and Migraines. I have been blessed with wonderful coworkers and friends, but no one quite "gets it" - I'm not sure they can. I get so used to just dealing with discomfort that most of the time they aren't even aware of my pain or fatigue because it's not that obvious (unless of course I'm limping or wearing a brace). Then I kind of shrug it off until I can get home and sleep or hug my heating pad. One comment I did get was "Where do you have RA? Your wrist?" ha ha ... I wish that was all. TGIF!

Wow - thanks to all for the support! It's really nice to not be ignored, looked at funny or even pitied. I just want people to work "with" me not for or against me. I think thats all any of us wants.

I have no idea of how to reach out to others for further awareness but the Rheumatoid Patient Foundation sounds like a good place to start. I have been on the RA Warrior website before so I will look into this further.

It's amazing that although we all have similar symptoms and problems, how different this disease treats each individual. I believe that this is part of the problem of why very few understand what we are going through. We are beyond comparison so to speak... While it may make one of us almost totally incapable of any movement without severe pain - someone else with the same disease, taking the same meds, having the same RA factors is out doing a 5K. That is what is hard to sell to the masses. But hey, we are up for the fight - if this disease has taught us anything it's how to fight.

Again, thank you all for your support - it means alot.

"But hey, we are up for the fight - if this disease has taught us anything it's how to fight".

AMEN TO THAT!

Right there with everyone on this. I actually could still open a pack of gum, I think... but I can't chew gum anymore. My jaw is too bad.

MarkusB, Thanks for bringing this subject up as this is so true. I could not agree with you more that we need to spread the word about RA because folks just don't get it. Looking at the commercials that are out now, do not do people with RA justice. They are basically ads to promote the medications now used to help folks with RA. Most of the ads don't show what we really feel and go through. Thanks RASally for the link.