frustrated | Arthritis Information

I'm pretty new to this RA, and I'm just beginning to realise how ignorant people are about this condition. When I'm asked what is wrong with me and I reply rheumatoid arthritis, the usual response is 'oh I've had that for years', I'm assuming by 'that' they mean arthritis. I have tried to explain on a few occasion that it is an autoimmune disease, but this information tends to fall on 'deaf' or more likely 'stupid' ears. People really have little knowledge about this condition and its effects. Do you all find this as well?? and how do you respond??

It's very frustrating...................

while it is frustrating think about how much you didnt know before you had it. Be patient with your friends they will learn as you explain to them. ..sooner or later

Terrific advice from "buckeye." In time when friends and family understand how RA affects your life because they will also realize how it indirectly affects them, too, they will become a support system you can rely on. * Gentle Hugs *

I've been having that same problem here at work. Someone else has osteo and now we are lumped together.

Personally I think RA is a much more serious disease because it is systemic and an autoimmune disease. It's more than just having pain- there's fatigue, malaise, etc. There's the unpredictablity of what each day might be like. You have to take toxic drugs and the progression is fast. You may get other autoimmune diseases just for having it. Hell- a lot of people have osteo and RA. You don't have the option to lose excess weight and do strengthening exercises to slow the wear and tear factor and gain relief from pain since your joints are no longer over burdened.

How do I respond? So far I don't because I don't want to act like I'm in a "my disease is worse than yours competition". But honestly- I believe it is and it is very frustrating. I just let them talk, talk, talk about how they just need to find the right "cocktail" of meds to get better and how they hope to get into "remission". They are on pain meds and went to a pain management place. I want to get off pain meds- the dr. says what is your pain level. 1. So stop taking them he says! It's just too much- my ears want to fall off and my stomach just ties up in knots.....

Someone on here (I wish I could remember who) had an answer that was a little different when people asked her what was wrong. I'm trying to remember (oh my poor fuzzy brain

The other thing you could try, is when they say they've had it for years, ask a follow-up question like "are you on biologic DMARD's?" and when they have no clue what that even is, it can open the door for you to explain a bit more about RA. Sometimes for people to realize how severe it is, they need to understand how significant the treatments are or how much the disease impacts your life.

Now some people prefer to keep their exchanges like this to a minimum, but when I see an opening, I try to help the person understand more about it. Some days I am a walking public service announcement. They need to learn somewhere if we're all going to get the understanding we deserve.

OTOH, sometimes you will realize that the people with "deaf" or "stupid" ears are not worth your trouble (unless they are close to you, when you might be more motivated to keep trying). Like Buckeye and watchingwolf said, be patient, but also know when it's time to move on. And realize for some people, it will take multiple conversations for them to really get it.

It is frustrating, but as the people close to you start to understand better, it will get easier.

ahhhhhhh hi may and welcome..

yes, yes and yes I think we've all gone thru this..

My family and friends all live long distance, so yeah they say ohh how is your arthritis.. grrrrrrrr.. I think, ..."think", I may have them trained that its RA!!

yes, someone else, put out the perfect description..

saying .. i'm guessing here too; but similiar:

I have a severe degenerative autoimmune disease.

ahh I like that, try and edcuate people, explain that arthritis does not make you feel like you have the Flu all the time,

the incredible fatigue.hmm what about degenerative joint disorder and autoimmune ... (i'm not awake yet lol)

There is no way, I could work, and i totally understand about competing for "best disease" LOL.. well you know what i mean,... i feel the same way about people who have

Cancer... and get tons of sympathy etc..

yeah its hard, i'm leaving out the arthritis part (this is after 4 yrs now, ).. bc as soon as that word " arthritis is heard, it clicks in their brain... familiarity!.. so i'm changing my wording!

good luck~ and blessings

I can relate to what you are saying.

Next when someone asked, just tell them you have an auto immune disease.
If they ask further, then explain that it is a disease where the immune system attacks it self.

If they press further then tell them the name of that disease.

Reverse tell the story.. It seems to make them think a little more and just not lump it into the arthritis bag as easily.
i told a friend i had an auto immune disease. she thought it was aids.

Gwen

At work, I get "you are too young for arthritis!"Hi guys, I try to look back to when I was diagnosed and I didn't have any idea either how serious it was, now I just say I have a severe inflammatory disorder that attacks my joints and organs, causing intense pain and fatigue and toxic side effects from the treatments, it won't kill me, but it has killed my lifestyle.!!!! Regards Janie. Yah that frustrates me too. But not as much as when you talk about getting your results and they say it's RA and the friends and family say "oh you don't want that". DUH! What is that supposed to mean? If i don't want it, it will go away? If that is the case then....

I don't want it

etc. etc. etc.

lol :)

[QUOTE=KatieG]At work, I get "you are too young for arthritis!"[/QUOTE]

When I get that comment, I take the opportunity to educate them on rheumatoid arthritis vs. osteoarthritis.[QUOTE=bubbagump]Yah that frustrates me too. But not as much as when you talk about getting your results and they say it's RA and the friends and family say "oh you don't want that". DUH! What is that supposed to mean? If i don't want it, it will go away? If that is the case then....

I don't want it

etc. etc. etc.

lol :)

[/QUOTE]

"Oh, well I tried to get osteoarthritis instead, but they were out of stock."

Oh and I love the ones who say they wish they had RA so they could have a never-ending supply of vicodin (LOL - I go through maybe 100 tablets per year). I tell them they can have the vicodin but they have to take the RA that goes with it. It's a two-for-one deal. I actually have Osteoarthritis and rheumatoid arthritis, and I can honestly tell you that they are totally two different types of pain, however, they are both agonising, and when you are allergic to painkillers, unable to tolerate DMARDS and NSAIDS, I don't really care where the pain is coming from, I just want to get rid of it!!!! I realise totally that the future is all doom and gloom regarding my skeletal system but the RA is far more vicious in terms of damage it can cause to not just your bones, but your organs as well. Regards Janie. For me, fatigue is the most troublesome symptom of RA. I have milder RA than most on this forum, and since starting plaquenil I rarely even need to take a naproxen or ibuprofen for pain. But the fatigue is still there. It is relentless. Thanks for all the replies.................I think I'm going to try the 'I've got a severe inflammatory autoimmune disease' approach from now on, and see what response that gets.