I tend to go with saying I have an autoimmune disease, because most do not know what RA is. No matter in which way it is explained people won't understand it and that's ok with me. What I hate is when people THINK they know what it is and act like you don't have anything. People confuse RA with regular arthritis. Little do they know people with RA have difficulty doing things everyday. I usually lose complete mobility to a joint. It feels like my whole joint has been torn off. I have yet to find a drug that helps for longer than 6 months.

Bengay lol why didn't we think of that?

It's weird how many blank stares I get & even when I explain they don't really understand the severity of it.

My oldest, closest friend of 43yrs I barely told about 2 weeks ago & even after like 20 minutes of trying to explain to him he just said, "So you're just stiff & have a little pain"? "LITTLE"??????? WTF??? Dude, I just told you I had problems getting out of bed, opening a car door, opening & closing my hands into a fist, moving my neck, sleeping with ice on my shoulder. "How is that a LITTLE pain"??

My wife is probably the only one who can understand the extent of what I experienced prior to the MTX because of course she lives with me. She's the one who felt I wasn't in bed & excused myself to the living room at 3am to sleep upright with ice on both shoulders & knees to get some relief! She's the one who witnessed me taking up to a minute to enter or exit a car.

I tell them it's mislabeled, that is should be called Rheumatoid Disease, and that it's basically the swelling of any and all joints, but could include internal organs as well. It's inconsistent on where it wants to bother me, and there are days that are good and days that are bad. Keep it simple, they don't need to know about joint #54 on toe #6 or the inability to wear high heels anymore ;)

I know! It's so frustrating! I have started out, first of all, by not calling it Rheumatoid Arthritis, but Rheumatoid Disease, because it really has nothing to do with Arthritis...what a misnomer!! I try to keep it simple..just that it is a disease which attacks the joints and can also attack the organs, AND CAN MAKE ME VERY CRANKY TRYING TO EXPLAIN IT!! HAHAHA...
I found a good book - "Living with Rheumatoid Arthritis" 2nd Edition, which I have given to friends to read. It's a bit outdated, but, it does explain RA in simple terms, goes through all the fun we have and for my friends who have read it, they are really amazed, because with the name Arthritis, they think it's just your Grandma's arthiritis, which of course, it is not!!
I have found that's the best thing yet, is trying NOT to explain it, but give them something to read and absorb for themselves...
Good Luck..I know it's hard....

oceans11

it's hard to be vulnerable and let people know how our lives have changed in a way that we would not have predicted and how that has perhaps changed hopes, dreams, and made present reality so damn difficult.

best friends. ouch. i was having lunch with my best bud of 30 years when I was telling her never in a million years would I have predicted that I would get this when both my kids were in junior high and I was planning to plot MY life when they went to college after doing the single mom hood route for so long.

to be so obsessed with the activities of daily life such as can I open it? will I get to work today? can I make it? all the growth and challenges have been pushed aside for disease amelioration and she saw my face when I said this. if she had brushed it off like your bud, i don't know what I would have done.

i'm dealing the disease cards life handed me. silence. stare.

try that next time with nonchalant dude.

Ros

Like some others on here I try not to even tell others. I too use the autoimmune word and try to leave out arthritis.

I also say if anyone genuinely asks it is systemic, chronic and includes things like days of general unwellness and brain fog adding that some of that may be caused by the medication....It is better sometimes to use very simple phrases and not unfamiliar words...(ie all through my body for systemic)

The moment you add the word "arthritis" you might as well give up with about 85% of the population. I expect I am the same in other areas... it is easy to cue into the word you know and mentally click the links as it were and get no further.

It is a cruel reality, and ever was so I suspect, that on the whole unless the people are close and love us, they are not really all that interested. Ten second ad bites only please...

Yes I am sore today and yes feeling a bit grumpy with that inner beast....

I go with this anymore ...it's a dangerous autoimune disease simliar to M.S...this is a fact , ive read this over and over again ..so i use that because it is the truth .plain and simple ...i hate to down play arthritis becasue it too can crile a person and is very painfull , but this disease stems out to more then that ...systemic is just that ...entire sytem invloved , not if or maybe ..but for sure !!!
Tami

My mom has that mitochondrial thing and she has a lot of chornic pain and issues too, and even she tried to blow off my diagnosis. I finally explained bluntly that I have a systemic, destructive disease which will eventually be the death of me. I take low-grade cancer drugs in the hope of stopping the forward march of its destruction.

At least it stopped the fact that she was trying to downplay my issues to make hers larger (which they may be, but I hate to hear that my stuff is no big deal...)

For the general public I just say I have a autoimmune issue that sometimes knocks me all he way down.

I like that one RAfighter! I find most people don't even ask but just look at me as if I'm a hypochondriac.
Like many here, I look 'normal' and they don't see me at my worst and if they did, they would probably just think I was looking for attention.
The last person I told because he asked " so what do you do these days"? (I'd not seen him in 13 years and back then I was far more active and working full time etc etc) I responded simply, that I was not working full time because I had an autoimmune disease. He said with a big grin "oooh that's right, the autoimmune thing mmm" as if it was some silly thing I'd made it up long ago that he never really believed.
It never ceases to amaze me.. the smugness of those who are fit and healthy as I once was.
I'm sure I was never smug like ..that after all, I grew up around a dying woman. I try to remember their lack of these experiences so therefore, their lack of empathy. It's hard to be tolerant when some people are just down right insensitive. The less said the better I find so, as not to have to deal with it.

It's hard... but in time u will find what works best for u in explaining to others

I FIND IT DIFFICULT TO EXPLAIN SUCH A COMPLEX CONDITION AND MOST DON'T FULLY UNDERSTAND THE IMPACT IT HAS ON ONE'S HEALTH. I FIND MYSELF AVOIDING DISCUSSION UNLESS IT BECOMES A SUBJECT OF EDUCATING ONE ABOUT A HEALTH ISSUE THAT TRULY AFFECTS THE BODY'S AUTOIMMUNE SYSTEM. IN GENERAL, IT DEPENDS ON THE PERSON ONE IS TRYING TO EXPLAN TO... GOOD LUCK CONFOOSED.
CAROLJO11

Every once in a while I make the mistake of mentioning the RA. Most recently I was in a flare so bad that my son had to carry my books and my things to my office. I couldn't even open a door. My coworker, in response to why my son was with me, said to take some Ibuprofen and get busy.

I forgive her. She doesn't understand. Besides, one of my Rheumy's suggested that I take Ibuprofen instead of the Prednisone to control the pain. If he is that clueless as to the severity of RA pain I cannot condemn my coworker for lacking understanding.

I usually don't say much to anyone as there just doesn't seem like there are any winners in the conversation. The exception is when my hands swell twice their size and are red so that the disease is visible. Then those around me start to get it.

Like many others, I stopped saying rheumatoid arthritis. People latch onto the arthritis part and have no understanding of what you are really going through. I tend to say autoimmune disease. Sometimes I say RA and if they ask what that is, I still don't say arthritis. I just say the basics- it's a disease that makes your own immune system attack your body. People kinda get how horrible that must be. But if you say arthritis, any understanding goes out the window. It took my own mother 2 years to really get it. They should change the name to something else.

My joints feel like they're 'broken'. Most people have either had a broken bone or a bad sprain, so they can understand that type of explanation.