I was just thinking about how most of the people I deal with these days are very understanding of RA. In the early days (18 years ago!) no one seemed to understand that no, RA was not comparable to the OA in their little finger.

The most I really interact with people any more is in my church. Generally because my meds failed when we got here, and going to church and playing in the worship team maxed me out totally. I did have to tell the worship team, why I needed a stool to sit on to play flute. And they have all been fabulous. Although the church has some hard stools, I bring a soft cushy stool, and they bring it into the church and take it out, without me asking. Mind you, doing that with a cane is rather difficult! They have also figured out that I have good days and bad days.

Last year, I went to practice one time on a Wednesday evening. For some reason, Sunday morning, I had massive flares and I simply couldn't get out of bed. Missed the service and everyone was so kind about it. Now, that I am starting to feel better, it seems like everyone is saying "you look so much better!" Well, I had no idea I didn't look good when I was feeling bad. But when people get to know you, they do start to care and notice.

So never be afraid to tell people that you have RA. But if they give you the Tylenol brushoff, well, that is on them! And yes, you don't have to tell everyone, or feel obligated to do things that are beyond your ability, but I do believe that if we do not educate people as to what this disease really is, then how will they learn? We are the public face of RA - maybe the only person they know with RA. So it is our responsibility, within reason, of course, to explain to people who are interested what RA does! And for those who are flippant and do not care, well, hasta la vista! NOT!

I was in an RA support group when I moved to Alberta 17 years ago, which my cousin had started many years before. It was a large, well attended group, but it became very theatre styled - ie, bringing in speakers and not so much support. The speakers were excellent, and I learned a lot, but there was barely a moment to talk to people. of course, the old timers knew each other, but it was very painful to go there, and not be able to have time to get to know anyone.

One time, a little old man came up after a man who was a pioneer with Remicade came up and shared how RA drove him to a place where he was on a high bridge, getting ready to jump off. He had lost his wife, job, family and friends, because of RA, and simply gave up. A policeman talked him down, and as a result, he was put on Remicade where he regained his life if not his job and marriage. Great story!

However, the highlight was a little old man came directly to me after the talk, and told me I needed to go on Kineret, a daily needle and pushed me to ask my rheumatologist. Now, Kineret only works for 30% of people, so it was weird he targeted me. I admit, I didn't tell my rheumatologist, but when the pain got really bad, I did finally beg him for something more and that ended up being Kineret, which made me 100% in combo with mthx. That was a "God" thing for me, although I know many people do not believe in Him, God was watching over me!

So, I guess we need to be judicious in who we tell, but there is no reason not to tell people, if they want to know more.

"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."

@ nonightshades

that's funny man. I have good sarcasm when I intonate this. I just tried. laughing. worth repeating.

depot

Hi greentea!
Thanks, coming here was the best choice ive made for my mental wellbeing. Just knowing there are people going through a similar thing is so reassuring.
I'm only 27 and that's part of the problem. I am too young to feel this old, and I know it. I just tell people I have an autoimmune disease that causes my immune system to attack my joints, but they don't understand what that feels like physically. They don't understand that with autoimmune disease usually comes fatigue. I also tend to get sick more often.

I hope you're feeling well these days and not getting too frustrated with the people who just don't get it!

SassyAndSore--
You are doing the best thing by following up with a Dr even at your age. I am convinced I had this when I was in my late 20's. The city I lived in had terrible Dr's and health care. Was like a drive through. I'm on the opposite coast now and things are much better, and possibly being in my 40's gets Dr's to listen. I SWEAR they do not listen to anyone who "looks healthy" or is younger. I'm not even on meds yet bc I've been avoiding it. I've been living with the pain and that's insane.
So--good for you for being proactive concerning your health!

I'm hangin in till my Dr appt later this month.
Thanks!

I recall one pompous a$$ told me I should just take some Advil or something. It was a rough day for me and frankly I didn't need this know-it-all who knows nothing telling me anything. So I responded, "What is it about me that makes you think I haven't researched this to he** and back?"

Another time I responded, "I guess you don't know what you don't know."

Nowadays I just give them a look that says, "Are you for real?"

People get an earful from me! OR, at times I just ignore...

hahaa!

I just loathe the comments at work like "haven't you used all your sick days?"
Or "weren't you sick last month too?"
It's like HELLO I'm sick everyday a$$holes....it's called a disease. Chronic....look it up.

This whole conversation string is epic.
One lady at work said "have you tried advil and yoga?" Gee, that's so helpful. In 3 years I haven't thought of that. Thanks for soliving all my problems! Or how about "gee I never hear you complain!" Well, I can start if you'd prefer. Hahaha. I'm such a sassy bitch. Lol
Love that you all understand!!

As someone who IS old and has RA AND the common OA that many older people get......I can tell you with absolute certainty that RA trumps OA any day of the week.

They are clueless.

We all need to stop using the word arthritis or rheuma~

I get it. I have posted that many times over the years. Once a fellow sufferer said that she just gave up telling anyone what she had or even discussing it. She just avoided explaining why she couldn't do something or whatever. And I know that sounds unrealistic, but after a while it sort of changed the way I thought about it. I decided to be quieter about my dx with people. If someone asked me to do something way too taxing or physically demanding for me, I would simply tell them "I have some chronic health issues and I just can't do certain things even though I may not appear ill." No one has ever asked me what is wrong with me after saying that, but if they did, I planned to say "I really don't feel like discussing it today. maybe later." For me, that was just easier that dealing with the average stupid person and fuming for days about it afterward. lol

I totally agree that RA trumps OA any day. Now, I know OA can cause issues, and need joint replacements. But it simply doesn't have the same kind of pain. I've picked up some more deformities, and my knees are a wreck since Simponi failed in Feb. 2015, but that pain doesn't compare to even one joint with an RA flare.

My knees hurt, but it simply isn't that kind of terribly RA pain. In fact, I call OA a "cold, mild" pain. A few people have taken issue with that remark, but hey, I have OA in a 100 joints, secondary to RA damage. And there is just no comparison. Even my mom who had her hip replaced due to OA damage, and the knee last month, doesn't consider the pain to be bad. And her knee was folded sideways, which is why she needed the knee replaced.

Systemic Autoimmune Disease?

Oh I was thinking about this thread, and another thing I use is, "It has to be treated with the drugs that are used for cancer." Somehow, that always elicits a response like "Oh you have cancer?" Which tells me they literally were not listening to a word I said! Because, after all, they already "know it all!" So then I repeat about "no, not cancer, but so BAD it has to be treated with cancer drugs" and that usually sends them away thinking.

We have to figure out something, and cancer drugs have always worked for me. LOL

working around work responses - this is it's own animal different and apart from other organizations such as familial or church quoted above.

with respect to work, if you can, I like the input given about being silent. it carries a lot of your personal power with you

depot

depotblue--> that is the truth!
I SO not used to being in a small town AND small company. So I feel I'm being a rude if I don't reply with something other than...nonya business. I have mentioned I have 2 autoimmune diseases and left it at that.
Some people leave me alone, but some keep making comments about my sick days. I haven't even used them all, but had to remind a coworker he is not my manager. Me being gone doesn't even affect his job, so not sure what his issue is.
But yeah the occasional "you're sick a lot aren't you??" comment makes me want to leave and never come back. (or pour my coffee on them, but can't do that) ;P
This convo is epic. Helps me get through the day. :)

Well guess what......those of us with painful chronic diseases get a free pass every now and then with respect to being rude back at them.

After all, aren't THEY being rude when they ask such insensitive questions?