Krobbs, welcome to the site, there are great people here to offer you support. When I was first Dx with RA I had my wife with me. The doctor explained what we should expect and how to handle it. I also went home and spent many hrs. searching the web, finding sights like this one and learned a lot from great folks like the ones here an what I could expect in the near future with my RA. While reading all I could I would short summarize it to my wife. Then we both sat down with the kids (all mine are older , in there 30's ) and explained to them what was going on and what was to come. It all went very smooth and I have all there support. Almost to much, they are all wanting to do things for me that I can still do myself. I think the most important thing you need to express to your direct family is that when you need rest YOU NEED IT. I try very hard to stay active and keep working but then you have those days when that's just not going to happen and this is really important that your family and who ever you work for if in fact you are working understand this. It makes life much easier for you and helps with the guilt that comes along with having to stop your everyday life and get some rest. have a pain free day ... :)

Hi Krobbs & welcome to the site,
It was a little difficult for me. When you mention Rheumatoid & then the "Arthritis" part, people tend to key up on the worth arthritis because they don't understand what Rheumatism or Rheumatoid is so they just think, "Oh you have some sore joints, take an Advil then"! My advise is try to explain to them the Rheumatoid part. Explain that it's an auto immune disease & how it can affect more than just joints but organs too. Then, they may be more inclined to understand that it's a little more than just old creaking joints.

I find it helpful to share well written accounts of what it's like to live with RA. I share things written by other people; this lends it more credibility. When other people are saying it, it can't be dismissed as complaining, exaggerating, seeking pity, excuses, being a hypochondriac etc. I occasionally email these to my SO, not so often that it annoys him, but often enough to remind him of what exactly I'm dealing with. He is much more compassionate than he used to be, so I'd say it's working.

I have also shared a few things on Facebook, and it's amazing how receptive family and friends have been. I am careful about what I share, what message it sends, and how it will be perceived by healthy people who don't understand chronic illness. I am hyper aware of the fact that good, decent people, regularly judge and label people with chronic illness as either objects of pity or worse. I don't want it to sound like I'm whining. It needs to be brief, objective, well-written, and persuasive without being over-the-top dramatic. I also try to avoid posting about RA too often, I don't want to be the sick person in the room, it tends to make people uncomfortable and that discomfort, despite best intentions, results in avoidance. I don't want to be avoided and I'm not seeking pity, I'm seeking understanding and I'm trying to prevent the isolation of chronic illness, as much as possible.

If you are strategic, you can educate and persuade people without turning them off.

Thanks everyone. I was diagnosed with RA when I was 35 and have been dealing with it for 2 years. My brothers and SILs have been great with it but my parents are another story. I think bc they can not see the pain in they think it is not that painful. I'll take all your advice and let ya know!!!

I believe that RA should be renamed to something like "autoimmune rheumatoid ____," without using the word "arthritis" in the name. The minute you say "arthritis" far too many people equate it with OA, which is totally different.

To this day I am confronted by those who believe that just because I look fine and walk fine that nothing's wrong with me. One of the positive things about RA is that you learn to become selective in what you do and the friends you keep. With a new friend I explain that I have RA, that I do have limitations that might be here today, gone the next day, and back the day after. I also explain that I am forced to spend a considerable amount of time dealing with fatigue, pacing myself, going to doctors, and rationing my social life. If they get it, wonderful. If they don't, that's their problem and I may or may not think it's worth my time to demonstrate to them the extent of my disease. My choice.

Californialynn that was awesome you just gave me a new perspective. All you guys did well at explaning. Very helpful as I am too newly diagnosed. But I am lucky enough to have a very understanding husband to be and mom who deals with her own chronic illnesses. And then I found this site which makes it even better. I see several specialists due to my Rheumatoid and the only ones who even seem to have a clue is my rheumatologist and neurologist but that's better than nothing. I wish you the best.

Happychat, I think most people with RA will agree that the first year is the hardest. It's a time for locking in a good rheumatologist, getting a treatment that works for you, dealing with the fatigue [or not], realizing that you will have to curtail some activites......and then there's the dealing with people in the workplace, school, home, and friends. And above all, it's the acceptance that you have a lifelong chronic disease. It is not meant for the feint of heart.

I'm 20+ years into RA and a bunch of other autoimmune and non-autoimmune diseases and I have to tell you that there's good reason to hope. With the right drugs and activity level and support system, life can really be good. Have hope!

californialynn,

Wow! That's a great idea about changing the name. If you take the arthritis out & replace it then people won't dismiss it as, "Some creeky joints for old folks". And I think it would make more people actually do some research to figure it out instead of thinking they already know what it's about.

Hi everybody

My RA have progressed significantly since the first year. In fact, the first year the pain and fever lessened somewhat but never went away and the fatigue stuck with me from that day to this Months later I had a severe flareup which brought more problems. The pain, stiffness and fatigue is always there and I get flareups every few days. I have a progressive type of RA and after flares I have to adjust to a new normal again. I haven't been fortunate enough to go back to my old self, but I am learning to accept the condition and I try to spend more time these days learning shortcuts to help me keep my independence with dressing, cleaning, cooking and driving.

I call it rheumatism. I don't explain to anybody anymore - they can look at my eyes, my hands and ankles and feet and see that I have something life altering so - no - RA is NOT invisible for everyone and it does NOT always get better after the first year. It is visible for many of us, even with biologics, prednisone, methotrexate, arava, sulfasalazine, ibuprofen and many other medications that I have taken.

This is what happened to me - some people get remission. But not everyone.

I am so glad that you guys are still here for me. Hang in there - all.

Blessings all around

welcome im new at this two , none understands arthritis tell they get it hugs min

I have intentional family. i don't care what my biological family thinks about anything whether it be politics, the weather or my RA :) - i have a carefully tended to group of intentionally chosen mega long term friends that I call family and I support all their weird and sundry maladies and they put up with me. birth families are wicked overrated. it's liberating to give up on validation or support i find :) and I don't have one of those what's it called spouses - that's wicked liberating too. from what i read on this list it's seems like we all need operating instructions to get others to assist or validate. this must be a bummer man.
depotblue

Right on depot - the RA is jackass enough by itself. I am not explaining nothing to anyone else anymore about this. It is its own uninvited entity. On the positive -this support group is the best thing that RA gave me.