Love your comment, Sue.

I, too, after four years, don't talk about RA unless it is with my own immediate family or very special friends who are always there for me.
In general, people have no idea of what it's like living with RA 24/7. After all, I'm sure most of us didn't know just how horrible it could be before we were diagnosed ourselves.

The following gives a pretty graphic description:

RA has the qualifications, the desire and willingness to attack "ALL" organs in the body. it's the immune system that does the damage. Basically, the immune system goes mentally challenged and sees the body as the enemy and begins creating and executing an attack to eradicate the body itself. In short, your body is eating itself. Hence the meds to suppress the immune system. It's not just the joints. It's the lungs, heart, liver, kidneys and so on and so and so on.

That's why it is so important to find the right doctor who will work with you to find the right med cocktail that works the best for you. .

It's funny, I was just talking about this with my wife and here is what we kind of came up it. It's similar to cancer except it is the immune system attacking and killing your body, but it has the severe pain and fatigue like cancer and you are taking really strong meds with potential serious side effects just to hopefully get into remission and be able to live a normal life. People can relate to cancer and I think help them get the severity of this stuff.

I'm lucky to have my best friend who also has RA & Fibro, plus my daughter also has the misfortune to have RA, so the 3 of us can really relate to each other. My husband has OA and so he understands about as good as anyone who doesn't actually have RA. I know he gets tired of my complaining but he never lets on like he does & that makes me love him even more ;o)

Most people when they ask what a certain health issue is about,is just trying to be polite and not really interested :( In a quick diagnosis would be an disease which cramps up a persons body and causes them pain.

As for me, I don't go into detail, I don't even tell my extended family about RA because they have no idea. Only my close friends and most of them are nurses so they get the picture. Otherwise I do not bring up RA.. If I have that look on my face like I don't feel well and someone asks me what wrong, I will just say Oh just one of those days. I know that if I tried to explain, they would not understand nor have empathy so I find it best to leave it alone.

an activist with financial security.

this made my day. what exactly? that you can see the whole picture. you are insightful.

a privileged position.

ditto again. it's like you are appreciative but you get the entire picture. working with RA is NOT the same as not working with RA.

Not having to worry about financial security is NOT the same as adding that to RA.

I would have figured you would have been able to see that when browsing Kelly's website. This is NOT to minimize the contribution. It just reminds me of Eleanor Roosevelt and other women in history that could make a stellar contribution because they did not have to spend 100 percent of their time making a living or staying financially alive.

Being a single parent for 12 years plus (the entire raise and launch) is NOT the same as having a team in house.

paternalistic, authoritarian and stupid (trentham comes to mind in Boston the mino guy) and pretty much all the RA's i had up to the one that cared to listen and evaluate my entire file.

priceless.

thanks for writing this.

my two in college get a stready stream about RA educative materials in case I croak soon and they get this soon . they are well versed. they are just launched. they are so interesting that I am not going to noose them because I need them. as I am sure you are not either :)

Ros

i agree with a lot of what sally said - about how it's kind of our job to educate people. i've led an alternative lifestyle from a young age. i've educated other people about HIV/AIDS, mental illness, STIs, rape/sexual assault, alcoholism/addiction/recovery, religious tolerance, women's/reproductive rights, gay rights, equality issues... and now i guess RA. i understand the frustration this brings up, and how much easier it is to just let it go and be like, 'yeah, i don't feel good' and leave it.

sally brought up AIDS. ryan white was pushed from his school and ostracized because the community did not understand HIV/AIDS. what we have learned and shared means that people with HIV/AIDS can live in less fear (less, but not none. they are still maligned and ostracized regularly).

sally also mentioned alcoholism. i'll lump alcoholism, addiction, and recovery in one pile. people never wanted to know about this. i feel that being 'out' about my recovery is important to my recovery, to other's recovery, and to help alleviate the stigma attached to alcoholism/addiction/recovery.

we've talked in other threads about being your own health advocate. we each have to speak up and be heard by our doctors to make sure we receive the treatment we want and know we deserve. think about taking that a step farther. i'm not going to stand on a street corner with a sign about RA (which i've done for other things in the past) but if i have an opportunity to educate someone who seems interested, i'm going to take it.

It's so frustrating when people don't get it...! People who knew me before RA know that I was active, energetic, enthusiastic about everything. Loved working out, was always on the go, always had a DIY thing going on at home, etc. Now - I'm tired. I feel sick, I don't feel like 'me' anymore, and these people that know me, and knew me, tell me to just 'get over it' and 'just do it and you'll feel better'. It's so frustrating that they can't see that this isn't a choice I'm making - I am truly exhausted, and I feel like crap, and BTW my joints are killing me today and I have to stab myself with a form of chemo when I get home so I'm going to feel worse soon!
I haven't figured out what my ongoing response to this is going to be - but I know I've been very personally insulted by people who I thought were my friends and understood.

What a post .... we have been here before and as time has passed some of us have "tempered" our responses and that's OK. I have tempered mine.

I got sick of the "Oh you have arthritis, well, my fingers hurt" or my favorite "Arthritis never killed anybody". So now I tell them I have auto immune deficiency - most go something like "wow, it has sure beat the crap outta you" or "was it something you ate?"

Any discussions I have now are short and cryptic. "Are you sick?" Response "yes" and I move on -
Not wasting my breath anymore - too many things wrong with me to listen to their blather of which I care not one whit. Those that know me and I have confided in just ask how I'm feeling and they are satisfied with either OK or Like Crap.

Peace to all and Be Well
Bluedogs2

Ditties indycarr

I mean dittos;)

I usually find they aren't really asking much like the common, "How are you today?" question. It's rare to find someone who wants the real unabridged version.

So I keep it short and simple by saying I have a degenerative joint disease caused by my immune system and raise up my mangled hand that no longer can grasp items. Sometimes physical displays of RA's abilities can be a great aide.

IF they are truly interested in being educated or even seem like they would accept more information I ask them to join me for a coffee or meet me for lunch to share our physical woe stories. Cause let's face it - if I'm not willing to learn about their chron's, ADD, MS, etc. why should they learn about my RA?

Besides, it usually helps me to explain it in terms they can relate too as I have yet to find someone who doesn't have something wrong with them and usually I can relate to whatever that is because RA does affect so much.

I have to admit this: I was really surprised at the responses to my question. When the first few responses came in, I thought uh-oh, I have really stepped into something bad. It made me nervous. I was also saddened by the responses. I feel for you guys who have dealt with this for so long, and have had so many people ignore, dismiss, belittle, demean, attempt to treat you, etc.

Personally, I think I will take the road of teaching people who ask, in small doses.

Thanks to everyone for their input, no matter what.

Your heart will tell you what to do.

=)
Lin

RA fighter,
These are symptoms of fibro too, which I know I have, but I feel like I may have RA as well, despite a Dr telling me I don't. If I do too much (and that is not a lot these days...lol) I feel seriously ill, can't eat, can't stay awake. the only thing is I don't actually have a fever...it feels like I do but my temp is normal every time I check it.