Sunday, June 7, 2009

The Invisible World of Rheumatoid Arthritis Speaks

Bonus: What is gray and lights up? An electric elephant.

Aren’t you amazed at the explosion of online activity related to Rheumatoid Arthritis? Of course the spammers have caught on, too. But in just the last few months, the number of genuine RA blogs has mushroomed. Every search I run turns up something new.

But it’s not just numbers. There has been a change on another level, too. You can hear fresh energy in addition to hearing new voices.

Our movement is not unified by any organization. There is not one single message, but many distinct topics and styles. So what is it that gives Rheumatoid Arthritis patients a sense of cohesiveness?

I believe that there is a noble goal, a thread which ties us all together. It is this passionate cry: We will be heard.

We have all decided that we must be heard.

This interest is no fad or hobby like so many blogs. For us, this is about our lives. We do not write or network as a mere diversion. We are putting our hoarse voices together so that we can be heard. Period.

I want to be the first to forcefully state that no matter how many there are with this message, there are not too many. Every day that this field is expanding, we are closer to an understanding of this complicated disease and then a cure. Every clear and honest voice is a contribution to that goal.

Rheumatoid Arthritis has been called an invisible illness. Our world is different from the non-RA world. And sometimes they are not even sure RA is real. What do they understand about our reality?

It is as if we are in a world like the one which Horton saved on the pink clover. I want to be like Horton, my favorite elephant. I want to encourage every voice to speak up until we are heard and the world of Rheumatoid Arthritis is truly recognized as Whoville was in the end. Each of our voices is needed.

Like the Mayor said in the story: “We’ve GOT to make noises in greater amounts! So, open your mouth, lad! For every voice counts!”

11 comments:

RA Guy said...

Hear Hear!

Kelly said...

They will hear, hear! :D

Andrew said...

No belly aching here! People just need to know! RA has no celeb spokesperson, 3 day walk or snazzy ribbon to wear. The shear numbers of people with it help fund the development of new meds ('cause there's money where there's new prescriptions). Thanks for being part of getting the word out!
Andrew

Kelly said...

Haha. A 3 day walk! How about a 3 minute walk? Then we could participate!

Andrew, I guess you and I (and each of us!) is going to have to be the celebrities on our own.

Stephanie/Carres said...

We do have a ribbon! It is blue and purple! I will get it posted on my blog!!

It is going to take all of us getting together and making our voices known that we do not have an invisible disease and RA isn't picky about who it hits... male/female, caucasian and the rest of the rainbow, young/old..it doesn't matter.
It is just a matter of time before some one will help us get the word out, but for now it is all up to us the pioneers of RA!

nygiantsfanatic said...

so how do we get a walk, roll, whatever??? maybe we can't all walk but we can roll. there are plenty of others out there who cn walk for us! you hit something here kelly! if the heart association, cancer society, autism, awareness, and others can have a walk, well, SO SHOULD WE!!!!

Kelly said...

Stephanie,

Yes! We are it. Me and you.

If not now, then when?
If not us, then who?

Kelly said...

Angela,

You made me roll on the ground - with laughter!
A ROLL! That is so funny, but it also might hurt. I guess we could get lots of wheel chairs rolling around...

I like the idea of others walking in our behalf the way I marched in the March of Dimes when I was a kid - the babies sure couldn'tdo it!

Sara said...

Absolutely! Every time I read an article like this and find another voice out there, I get even more convinced that we are really going to make things happen.
s

Kelly said...

Yes, it did happen in our lifetime that people began to understand many other serious conditions like diabetes and heart disease.

One day and one voice at a time.

kcsalmi said...

There is a walk, it's through the Arthritis Foundation. I raised money for it this year. I was going to walk but lucky me all of my meds gave me pancriatitis and an ulcer and landed me in the hospital that week. But at least I was able to raise awareness and money. There are still walks coming up. Check it out at arthritis.org, letsmovetogether.org or: http://www.arthritis.org/arthritis-walk.php

The arthritis foundation's annual walk is nationwide and raises awareness and money to fight arthritis which by the way is the most common cause of disability!! There are 46 million of us out there suffering with arthritis. Hopefully I'll see some of you at the walk next year oh and dogs are welcome too!