I like y our comment about not expecting others to understand, I had no knowledge of RA until it hit me, so don't expect others to have any. Sometimes I explain, sometimes I don't
When all is said and done everyone has some problems and everyone thinks theirs is the worst.
If I find someone who really wants to know then I will give some explanations.
It is not worth the emotional energy to fight some battles.
I do think it would be good to change the name to rheumatoid disease though as one blog suggests as taking the word arthritis out of it would stop a lot of misunderstandings
Hi wonderwoman,
I like your screenname. :)
Your one statement - "When all is said and done everyone has some problems and everyone thinks theirs is the worst." - is powerful and so true.
I know what you are speaking of when you mention changing the name of the disease. But I may be in the minority here. I think that "rheumatoid disease" refers to many more diseases than just RA. Rheumatoid arthritis is ONE of those rheumatoid diseases which are categorized.
I believe that if I told someone I had Rheumatoid Disease, that would create much more confusion. But that's my personal thought and I'm not sure how many might agree with me.
I do thank you very much for your comment. It is one which makes me cheer and think.
Hullo again
I chose my screen name to boost my morale. the word disease could cause confusion I guess but it would be at least confusion which was easier to explain.
the word arthritis has been associated with old people with a few aches and pains which are confined to the joint, for so long, I think it is a mindset.
Anyhow it is great to have this site to vent on with people who do understand even if so many people in our world don't.
Thanks for the thoughtful post! I really understand that response - no, it's not your gramma's arthritis and it's really not the same as what you have got in your knee from that old football injury - as much as that might hurt, but you are so right. We owe our friends an open mind and an open heart. There is so little public education on this disease and the ads for treatment certainly don't help - they make it look like you can just take this or that and be out riding that bike again! We ought to try and educate a little, but gently, without preaching, with an open heart.
Hi Leslie,
It's good to meet you. Thank you so much for your comment. I agree that there is not enough education and the commercials seem to spread a false understanding to those who do not have personal experience with the disease. It might not help those around us who don't understand why we might not respond to treatment in the same way.
It's kinda funny. I gotta say that some commercial campaigns really can do some educating. Look at the ads for gout awareness and gout medication. They actually explained the disease a bit. Nice.
I don't think that the RA drug commercials are really out to educate as their primary goal. But they are getting better in resonating with RA patients though. Tiny steps.
Keeping an open heart is an excellent way of summarizing what I think I was trying to say in this post. Thank you for putting it so succinctly and gently.
Lisa
Hi
I chose my name to give my confidence a boost, I don't wear her fancy underwear though and certainly don't look like her.
I think that although the word disease could cause confusion at least it would not latch onto the mindset that people have about the word arthritis, which they think is an old lady with aching bones which get worse in the rain.
It might be better to say something like I have a condition which eats up my bones and organs, makes me feel like death, exhausted and full of pain....[list a few more of it's issues], and it's name is.....
Give the explanation before using the name.
Anyhow.....it is good to have our online friends to vent with.
great post, Lisa!
In my experience, people are usually pretty receptive to being educated. I think the exasperation comes from the minimizing that is often part of the comparison with OA (either obvious or inferred). There are so many commercials on TV about over-the-counter painkillers for "minor arthritis pain" and I think that this contributes to a perception that arthritis and the pain that comes with it is minor. It can get your back up when the 47th person that month shrugs off your experience while you're in the middle of a flare that is making every movement difficult. And sometimes that means that we jump to conclusions and don't listen.
thank you for reminding us that assumptions are to be avoided.
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Great post Lisa! It can be very hard to not want to just launch into outerspace when you get the old "I have a bit of that in my knee" spiel! You sure made me think a bit, it does get better as the years go by, but I still have to bite my tongue at times. Thanks for the insight!
Brad
Thanks Brad!
Seems like I've been biting my tongue regarding this topic for some time now. I just didn't want to alienate too many in the community.
Not long ago, I was at an event where a friend spoke powerfully about RA and her experience. As she came off the stage, one of the organizers sympathized with what she had said, also saying that she had experienced some of the same things. The speaker didn't really hear much else of what was said (but something about arthritis) and walked straight to her companion where she began to share her immediate, exasperated thoughts outloud.
I tried to interject that the organizer really might understand because she has a daughter with JRA. The speaker didn't believe it at first. Didn't believe me. "if that's even true..." Fortunately, the same organizer came over to talk more about her daughter and the response they/she get in response to her JRA. The daughter is 8 now, takes two medications including methotrexate, and is finally doing well.
The speaker softened her tone and begin to have a real conversation, but it was obvious that she still held some annoyance in her body language. At that moment, I felt that this might be an important topic to discuss in the community.