This really bothered me when I was first dxed 7 years ago... but I've come to understand they don't get it... and never will.... so, I look over it and just move on....
My "real" friends get it. My husband doesn't feel it and he tries to understand...
it's like my friends that have had or have cancer... I don't GET it really.... But there will always be people that misunderstand... and it's ok.....

At least he's asking.

I had a cousin with severe Juvenile RA from the time she was 1 1/2. She and her parents were wonderful people, plus dealing with such a difficult diagnosis and a disabled and in-pain daughter. There were no meds in the early 1950s. But when prednisone came out, she was put on it. It helped the pain a lot, but the damage continued. She got the fat Cushing's face, even though she was thin. The prednisone stunted her growth, leaving her the size of a 4 year old. She traveled by wheel chair.

I really liked my cousin, but my mom used her against me any time anything went wrong with my body. So when I badly sprained my ankle skiing, she made me walk to school and back 4 times a day (home for lunch), in the snow. I ended up with bleeding hands and armpits, and my mother's response was "That's nothing compared to your cousin with RA." Ok, she was worse, I knew that then. But to minimize my pain, and to refuse to take me to physiotherapy? Not right.

I never resented my cousin, but I did resent my mom. RA became "my cousin's disease," that trumped eveyrthing I was feeling. Well, I was grateful I didn't have it! I made lots of trips to the hospital to visit my cousin after constant surgeries, too. I thought supporting her was the least I could do, given my good health.

My grandmother also developed painful "rheumatism" with fat, red, hot fingers, and disabling her from walking much. I thought it was old age, but she was young, in her 50's. Although she was not as bad as my cousin, her granddaughter.

I had no idea what the future held for me. When I got sick at age 44, and my mother pulled the "not as bad as your cousin" I did not deal kindly with that. I told her that I was just as bad pain wise, I just hadn't developed the deformities she had. My mom never said it again, especially when I ended up in a wheelchair, too. When we built our house in 2000, about 2 years into RA and not medicated, my parents came over to help paint the interior. I could not even hold a paint brush. That time, no words of condemnation were spoken. I watched, helped as I could. Looking back, my pain must have been obvious by then.

The thing about my cousin, was getting it so young, she had so many visible and severe deformities. So anyone who knew her, had a visible reminder of how bad RA, is. But with DMARDS and biologics, the outside reminders of RA are not quite as visible for most of us Well, except for my feet, and now my hands. And who wants to carry xrays around to show all the inner damage in the joints, anyway?

I think spouses have a hard go of it. It's not just that they don't understand RA, but if they do, they are tired of it. Tired of the complaining, even if what we are saying is true and justified. My husband is really good when I am bed ridden. He goes above and beyond the call of duty. But when I get better, he is relieved and just wants me to pretend to be normal, in spite of the pain and less obvious joint flares. I guess I have learned to cut him some slack, but be firm about what I can do and not do.

i'm with sun. i don't seem to care anymore.

it's a systemic auto immune condition - and though your spouse might not be getting the vernacular correct at least he is doing a check in :) (smiling)

maybe he has changed some material actions that has helped you since your diagnosis? (my hope is springing eternal for YOU ) :)

depot

As is often the case, I agree with California. GENTLY correct him and explain to him that you have RA, not "arthritis" and that it bothers you when people confuse the two.

better still, maybe tell it to him in a story form about someone else saying it, not him. Tell him it drives you CRAZY that people confuse the two and think it's just an ache here or there when it's raining and not a SERIOUS DISEASE that effects air more than just our joints!!

It will be much easier for him to absorb if it is not directed at him.

I actually tried to get a movement going to change the name to make it clearer that it is a systemic inflammatory autoimmune disease (SIAD). Wouldn't THAT be a great name for it? No confusion!!

It doesn't matter. It's what you feel. And if what you feel needs some help, don't be shy about asking. Yanno?

Yeah, I have a very hard time asking for help and I'm getting back to that point :(

I did a good deal of shoveling yesterday (yay me!) with no consequences but had trouble opening a bottle this morning. Just sucks. As you know.

It causes me added pain because my family cannot understand. I have a plastic bin that holds my meds and on the inside I wrote, "You will never understand." The idea that my husband and children will never understand this hidden, painful condition is becoming more bearable two years in.

So I'm reading that many are pushing to rename RA as Rheumatoid Disease (RD) because it is so easily misunderstood as simply arthritis. I actually had a cousin (who is a nurse!) start telling me about her aches from Osteoarthritis as if it were the same thing as Rheumatoid. BTW she also thinks that it can be 'cured' with diet changes and essential oils. Wow. If only it were that easy.

I would go for a swim in all those oils if they worked for me! I too get a little bent out of shape with the certain individuals out there that don't really get it. I see the difference in me between the disease and the side effects from the meds. I do make an effort to hide them too, I don't like looking at myself that way. I am the last one to expect a pity party,(I'm not dead yet) I just would like some of my people to understand there are days I can and days I can't. But still sometimes they get mad, I'm not sure what to even say. Sorry not sorry?

no one can emotionally fail me without my consent (sorry eleanor robbing from ya).

depot

I hear ya SusieG

But you know what? I have run into individuals, casually whether at the gym or mall or even at work who for when I bring up my RA they actually know a little about it!? I'm somewhat surprised at times.

But one of my co-workers said, "Yeah I see commercials about Humira all the time"! I had to think about it a little but I do see a lot of commercials about RA drugs a lot when watching TV, Humira is the one that pops up the most with Enbrel 2nd & I'd say Orencia 3rd.

Drug companies cannot advertise on Canadian media, so we get very few of the ads for biologics. Except on the American stations. In a way, it is good that these ads contribute a bit to people understanding what a serious and debilitating disease RD or RDS or any other name except "arthritis" is.