Well good luck with that [i.e., explaining it].

I've seriously thought of telling them it's a disease that functions like a very, very mild case of cancer.

I don't tell them I have rheumatoid arthritis.....because the name itself conjures far less dreadful diseases. I tell them I have the dreaded "chronic autoimmune synovial" disease.

You have to remove the word "arthritis." Once you mention arthritis they assume it's the run-of-th-mill non-autoimmune disease. [I mean no offense to those who also have OA.]

The key is: they probably mean well.

I tend to say Systemic Rheumatoid Disease. I was reading a doctor published RA magazine and they all referred to it as "Rheumatoid Disease" so even the rheumatologists know there is a problem using the word "arthritis" because of OA.

I like 'systematic," because then I can say how it is a disease that attacks joints and organs, like heart, brain, lungs, kidneys and skin. Then I talk about exhaustion, and show them my RA nodules on my skin. Of course, I have some visible deformities, so that helps too. Not that we should need that to having people understand what we have.

Yesterday I was in church talking to a fellow RA sufferer. She also has vasculitis, meaning she can't use a biologic, just mthx. Plus, the doc is weaning her off prednisone. She said that tomorrow (ie today!) was her mthx shot and she was really feeling it. I paused a bit, and then sympathized. I know she has various deformities, but I had to think about my own pain to relate to her seemingly healthly appearance.

I guess RA is a "been there, done that disease." Unless people either experience it or have someone close who has been through it, it is hard to understand.

I find it easier not to tell anyone who doesn't absolutely need to know.
Saves explaining, saves people misunderstanding/ underestimating the impact or worrying about me if they do understand the potential impact.

I like zee's response.

good one zee. I really liked your worrying about me comment also. wicked cool. good point.

it's the wanting of affirmation and understanding from folks that can't give it - that is nice to give up. I have a best friend who has RA (can you believe?) and we met at an in person rheumatoid support group (I can't emphasize enough how it could be the best thing you ever did to start a local live in person get off the internet group). and since this pal can answer my thoughts about RA for me, I find that I do not have to have another 49 folks who do get it. My best friend group from college and work et al do NOT. and my family does not. You need at least one real time person who will say in response to your bemoaning a shower "good luck with THAT" (that's one of our inside ra jokes, how long the boring adl's of life take once you are a decade into this disease or hell sooner) - find ONE person who can answer your RA thoughts - do not bother to educate or seek affirmation where you can't get it. I find for myself, that attepting to find affirmation where it will not materialize is crazy making.

hope that helps (hugs)

and good luck with that shower....smile.

depot

Zee--agreed. My main 'explaining' stems from having to explain to family why I'm acting 82 & not my usual hyper happy self. (Can't hide the exhaustion any longer). My employer has noticed my many appts, bloodwork and one day they sent me home bc I "looked bad."
I'm a very private person with the exception of on here bc it's online.
It's to that point where people can see a change in me. And I hate that... loathe.
Depot--ha! Thank you for the encouragement. I like the way you think.

I seriously wanted to scream or cry when that girl at work acted like it was no big deal and all
I have to do is "take a pill"
Before I had this I never blew off people's health problems. I'm also old fashioned and believe you should respect people older than you & not give advice when you have no clue what's going on. LOL
grrrr

I kind of laugh at it now to be honest! I have migraines as well & I don't know how many people say "Oh I get those" after about 20 seconds of them explaining I can tell they've never had a migraine just a regular headache. NOT the same thing. LOL! Anyway, about RA, I've only had 1 friend who just couldn't get it & we're actually not even talking any longer, that was his choice. My other friends are actually pretty curious about RA & by them asking REAL questions it gives me the ability to vent a little.

I like Zee's comment, too. I don't have any problems, never had. When I first started getting out of the house, after initial onset and disability, I was just another crippled person that no one would talk to, except those who were working with me. Since then, I've had conversations, but I just don't let it pause long enough for questions or comments. "I have rheumatoid aerthritis" is all anyone needs to know. How the fit that into their own understanding is their world, not yours.

I too have quit trying to explain or say anything about RA. I do not even think my parents truly understand what I am going through. It was like I said arthritis and it became no big deal. Yes I look like crap, yes I feel like crap, I have RA. Well go take a Tylenol and get more sleep you will feel better. Really, Thanks.

PinkCat69--->Hahaa! I just have to laugh bc that's the way it is.
If I didn't work for a small company and live in a small town NOBODY would know except very close family.
I leave work a lot & unfortunately everyone knows when I leave so when I'm off to the Dr a lot people notice. Otherwise I would not say a word. Despite my best efforts, coworkers have noticed me dragging and "looking bad.'
I honestly think some people mean well, but I don't like explaining my personal health business to anyone. It's mainly work that's the issue.
Not used to this small town living yet. It's a nice change though and good for my health :)

oceans11--> I used to get migraines a LOT. So I can understand...popping an OTC med really does nothing. Sleep, food, darkness, and silence is the cure. At least these people understand migraines. Maybe next time Iook sick I will say I have a migraine. Hmmm...good idea.
I basically told one (nosy) lady to get used to it--I have an autoimmune disease. Some days I will look and move better than others, and I asked her not to comment every time I look badly. I come to work, do my job and if I feel bad enough to stay home I will.
I think telling people it's not contagious works too. That should stop the quests.

Person says to me, "Have you tried so-and-so?" If they are sincere then I answer truthfully and give a brief explanation. If they aren't then I often reply, "No, haven't tried it. I have grown to enjoy the feeling of my joints all dislocating in slow motion. You should try it".......no, not really.

I've stopped trying to explain to people. Instead of saying "I'm sorry, I can't help you move that couch because I have arthritis." I say "I'm sorry, I can't help you move that couch."

Most people just accept that, and don't ask why. I don't want to have to explain anyway. I'm tired of trying to convince people I have a problem. So I just focus on factual statements of what I can and can't do.

Oh my God you guys, finally people who understand. I have palindromic rheumatism and some days are excruciating. I am so tired of people dismissing me or acting like their daily aches and pains are comparable. It's so frustrating. Considering I work in an office with lots of typing and clerical tasks, I feel my coworkers should know in case one day I can't do hole punching, etc. But they don't seem to get it. My favorite comment was "at least you know why you hurt, I'm just old" Oh okay, I didn't know autoimmune disease is preferable to natural aging. So frustrating!! Just needed to vent in a place to people who get it

SassyAndSore-->
I totally get you! I work in an office too. This is why I am going with a different explanation than "arthritis" bc people are like you seem too young for that and they think I'm being wimpy or prissy.
Luckily, I can kind of hide when my hands are working well. So no explanation needed.
Don't know how old you are but it seems people assume if you look younger & are a positive person not walking around sulking about your aches and pains this means you are FINE. Uhhh...NOPE!
Vent all you want. I totally get it.