Others' advice & lack of understanding of RA | Arthritis Information

Does anyone else get frustrated by these two things? I find so many people don't have a clue what those of us who have RA are going through and they also give lots and lots of advice, as though you aren't doing everything you can to manage your condition. I look "normal" except for a slight limp but when I explain about RA and OA to people they just don't seem to get it. I often feel that they are thinking that I don't try hard enough and that if I just pushed through the pain I would get better. Even if I explain in detail about it being a systemic and inflammatory condition, again, they just don't get it. I get so much unwanted advice about drugs, herbal remedies, exercises (some of which a person with RA shouldn't do), diet, etc., etc. I'm an intelligent person and I'm trying to manage my condition as best I can with the help of an excellent rheumatologist. Maybe I'm just too thin skinned in letting these comments get to me but I'm tired of being treated like someone who just isn't trying hard enough, as though this is something over which I should have total control if only I did the "right" things. Any other comments along these lines?I keep my condition to myself for the most part. My family is very supportive but besides them few every hear me mention it. Many of my co-workers know but it hasn't really been a problem for me. I get annoyed at times when people mention "arthritis" as if they can understand what my life is like....but it's unlikely that they'll ever understand or even try to so why bother.

I've had to learn to smile and nod when the occational friend or family member mentions some off the wall cure-all that they've heard of. No use swearing it won't work for you....just say "I'll look into that; thanks."

Oh yeah, I am sure most of us feel that way. As if whatever they suggested would trump the diagnosis and skill of someone who probably spent more time learning rheumatology than the wise one spent in school.

Maybe you should say, "Wow! Let me give you my doctor's number, I am sure he would be very interested in your medical knowledge." Unless the guy was a complete moron, that should get the topic changed in a heartbeat.
I do hear where you are coming from but keep in mind that you probably didn't know naything about RA either before you were diagnosed. Most people may not truley understand but most of them are only trying to be kind when they offer adviceYes it bugs me. And seriously yes some people believe all you have to do is drink cherry juice. So they obviously do not have a clue. [QUOTE=milly]Yes it bugs me. And seriously yes some people believe all you have to do is drink cherry juice. So they obviously do not have a clue. [/QUOTE]

Cherry juice does help, but you've got to mix it with ice, vodka and perhaps a splash of lime juice.

Of course, it only helps for an hour or so, and tends to make you more prone to falling overDon't tempt me tonight JasmineRain-LOL! [QUOTE=wanttobeRAfree]Don't tempt me tonight JasmineRain-LOL![/QUOTE]

jas you have a great sense of humor:)

i think no one will understand unless they have been there

and everyone can relate

I think when they hear the word arthritis that's all they hear and then assume it's all the same. I quit using that term. I say I have rheumatic disease that attacts my immune system and makes my joints through my body damaged.

I have also told people, thanks but I have a dr I feel comfortable with and see him regularly and we have a plan.

My MIL says I need to get off all the meds I take and get more exercise. She's the one I have a problem with. Old school. No meds, etc. She can really tick me off and I have quit going over there to avoid confrontation because I can't handle it without going off on her.

Just wanted to share another one of my favorite t-shirts...

"My disabling chronic illness is more real than your imaginary medical expertise."

CB, yes it is annoying. Try to remember that they want to be helpful and have no idea how much they make you want to slap them. Some of us have stopped using the term arthritis when we're talking to people and say something like a "debilitating systemic inflammatory condition".

I hear ya. I have family that does have OA and some spinal problems that think my pain since it is "only RA" is not real. If you only loose some weight you won't be in pain is the response I get from them..... Argh.http://shop.cafepress.com/arthritisI get the same thing from my family. I have explained to them the difference between RA and other types of arthritis because they are always telling me ways I can rid myself of this disease. It would be nice if RA and related diseases were separated from some of the other arthritis diseases such as OA. I even get the same thing at work.... from doctors and nurses! I'll have patients come in that when I triage them I know what's going on because they are describing me. "My wrists and hands have been killing me for the pst two months, I've had low grade fever, difficulty sleeping." Instead of testing people for RA, they assume that all they want is pain killers and the patient will be discharged with a prescription for naprosyn and told to follow up with their own doctor. We see a lot of people who come to the ER because they don't have a doctor. The ER may not always be the place to diagnose RA, but I think adequate treatment and adequate follow up services should be provided.Try explaining this whole thing to others when you don't even have a specific DX! "It's sort of like RA and lupus, but not exactly. The blood work is positive in some areas but not in others....." Then they REALLY don't get it and I can't say I blame them. I don't even get it. What I do "get" is how I feel on bad days and no one who hasn't experienced the same can really understand.

I think the strategy of avoiding the word "arthritis" is a good one. People think they know all about it and they don't really have a clue.

It doesn't annoy me because I realize that people have absolutely no understanding of RA. Try explaining that you have RA/PsA/Oa!!!! I don't even try. I just tell people that I have an auto-immune disease that causes pain and I'm taking some "star wars" medication to go into remission. That's usually the end of the conversation.

My friends and family have lived the disease along side me, so they understand completely and as long as they understand then I don't try and educate the rest of the world. The only time I discuss it more than usual is when someone tries to convince me that the foot wash can cure any disease, or the bark of this tree can take away your pain and the newest fruit from some obscure island can cure bone disease. This is when the soap box appears and I step up on it. Lindy