THIS debate is ongoing on this forum. You can probably look in the archives and find a lot of info. Everyone handles it differently. Personally, after for years, i don't talk about it any more.... ok don't get it. And that's okay. I came to terms that they don't have to understand. It is no longer necessary for me. I used to really need ppls understanding but i have more peace once i let that go.

i'm still in the early stages - only dx'd a couple of months ago - and i still want people to understand why i can't come out, why i have to leave early, why i am sleeping in the middle of the day. i don't want to just say 'i'm sick' or 'i'm not feeling well' because then i'll be telling people that ALL THE TIME.

i don't have a heavy bio background, but i do love research and love educating people and explaining things to them... i tend to over-explain as well. so i'm still learning how much to say, what to tell them, how to explain it. i'm not doing very well.

i'm still getting a lot of 'oh i have ra too, look at my finger' and then i want to punch people.

i've been trying to use the 'immune' word to describe things. my IMMUNE system is trying to kill me. my IMMUNE system is suppressed by drugs. my IMMUNE system neads a swift kick to the ass. stuff like that.

Hi Confoosed! I get asked this lots from my friends and family especially since I have to plan my activities around mtx sickness for 2 days. This is what I say and I keep it simple...

"Rheumatoid Arthritis is not a disease that only affects the joints. It tricks my body into thinking its battling an infection in different joints each day which gives me chills, fever, makes me weak, fatigued and even acts like the flu.

When I say this...they all seem to understand what I mean.

I'm so tired of trying to explain it, I just tell them, "RA is a disease you better pray you never get." They kind of look at me like.....Oh!

After 6 years of saying I have Rhuematoid arthritis, and always getting that confused look, and saying, aren't you to young?

I now always say, I have an autoimmune disease, that attacks every single joint in body. They stare in horror and never ask details. =)

I like things simple, so that's all I say.

When you had RA awhile, you don't talk about it with friends and family anymore. No one will ever know what your feeling, and truthfully they really don't care. I mean yes, they all feel sorry for you, but there is no way they can relate to it. That's why this support board is awesome.

Last Christmas I was given golden raisins soaked in gin, by a close friend. She said it might cure me. *sigh*

Never heard the word lay person, had to google it. LoL

Lin

golden raisins soaked in gin? geez, if curing stuff like this was as easy as grapes and gin, don't you think most of us would never have gotten it? lol

Generally don't get into it. If, on a need to know basis, I will say RA. Let them know it's not IS, but rather an incurable autoimmune disease. But said. Trish

@confoosed - I am most frequently asked this question in the context of someone asking why I'm limping.

I keep the answer very short and sweet: "I have an autoimmune disease that attacks my joints. It's biting down hard today!"

Notice I don't say "RA" (most people don't know what that is) or the word "arthritis" (because everyone thinks that's an old person's disease that makes you unable to open jars and wear cute shoes, but doesn't hurt).

80% of people leave the explanation at that, nod sadly and just say "I'm sorry." And for those folks, that's enough.

10% of people, usually good friends or others with some knowledge or personal experience of related diseases, will ask for more details. I engage them until one of us gets bored of the conversation.

And another 10% will offer up the "oh, I have a friend who went gluten free/wore magnetic bracelets/took flaxseed oil/did yoga/tried acupuncture/practiced positive imagery - and I just nod my head and say "uh huh. un huh. oh." And then I change the subject and make a mental note to never speak of this again with that individual. ;-)

I tell them it's non of there business LOL I got sick of being polite about it and people telling me that they have arthritis but they can work etc I just finally got to the point where I didn't want to be compared or belittled so I just said i'm sorry it's really not your concern. Sometimes that makes them never question you again :-) I could blame my Detroit background on that ounce of rudeness lol When I did try to tell people I just told them it's an inflammation of the joints that causes pain and some other side effects I've got a touch of social anxiety so I don't like being asked personal things in person so I never went into great detail

I don't say anything anymore either, it would make me too upset when they either give you the eye roll (you know everybody has arthritis) or they'll give me the great advice of putting some Ben Gay on it. To think I pay two grand a month for meds and I could have just put some Ben Gay on it, silly me.

ahahaa sue I know exactly what you mean!!! that's so funny :-)

Hahahahaha at Suera!!!! I think she wins the prize for the quote of the day!!!

Okay, makin' notes here:

1) keep it simple if you say anything

2) stop saying arthritis

3) a cure resides in a combination of raisins and booze, Ben gay, magnets, cherry juice, accupunture, no gluten... maybe a good exorcism or blood letting...

Thanks for your replies everyone - although they sort of made me sad. I feel for those of you who have been worn down by ignorance. Thank heavens for this support group.

Add this to #3: someone I actually really like gave me a pamphlet about $75/half gallon salt water, sold through multilevel marketing.

Someone who asks "What exactly is RA?" is at least trying to understand. I'm another one, though, who doesn't offer anything anymore unless asked pretty specifically. My relatives in the science fields, my friend who's having chemo, my 94-year-old buddy with lupus, the one person I know here with RA, thems are worth talking to. Most of the rest won't understand or you'll have to kill them when they ask if you've considered a gluten-free diet.

where is this asking happening?

I work full time during the week and a second job on call on the weekends.

I am always in pain and I am always tired.

but I am always showing up so no one sees the need to ask me anything anymore.

in the earliest stages 6 years ago I was hospitalized for the RA, also years 1-3 almost always the lungs, the mtx was my pathway for brutal pneumonias. so THEN it would come up but only as the cause (I don't get those anymore now that I am off mtx) and as the reason I could not have my meds while I healed from infection.

now even with four splints on, a face mask (in staff meeting) and gloves no one questions me, I am there so they don't think anything of it. my disease is invisible to them.

IF the specialty pharmacy delivers to work my biologic on ice, no one asks.

if I am splinted from head to toe, no one asks.

If I am on the computer for 8 hours with splints on no one asks.

is this progress? probably.

if i want an accommodation i have to holler for one, then my supervisor can get kind of icy. i don't like that.

i don't have any great need to educate strangers.

i don't care to talk about RA to anyone really unless you are in my inner circle and I already asked YOU about YOU, then maybe I'll take my turn if we are really practicing compassionate listening/sharing and we are all done with YOU and your issues.

Ros