The Invisible World of Rheumatoid Arthritis Speaks | Rheumatoid Arthritis Warrior

The Invisible World of Rheumatoid Arthritis Speaks

horton with text url

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

Rheumatoid Arthritis Voices raised

Aren’t you amazed at the explosion of online activity related to Rheumatoid Arthritis? Of course the spammers have caught on to that. But there’s real RA blogs too. You can hear fresh energy and hearing new voices all the time.

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.

Discussing Rheumatoid Arthritis is no fad or hobby like some blogs. For us, this is about our lives. When we talk about RA, it is not as a mere diversion. We are putting our hoarse voices together so that we can be heard. Period.

There is no such thing as too many Rheumatoid Arthritis voices. Every day that we speak clearly and honestly, we are closer to an understanding of this complicated disease and then a cure. Each voice is a contribution to that goal.

How Rheumatoid Arthritis voices are like Who’s

Rheumatoid Arthritis has been called an invisible illness.  There are even some people who don’t seem sure that RA is real. In some ways, our world is different from the non-RA world. Do they understand our reality?

Maybe  it is like 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!”

How Rheumatoid Arthritis affects our actual voices: Cricoarytenoid Arthritis in Rheumatoid Arthritis, Part 1

Related posts:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

19 thoughts on “The Invisible World of Rheumatoid Arthritis Speaks

  • June 7, 2009 at 6:03 pm
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    They will hear, hear! 😀

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  • June 7, 2009 at 11:58 pm
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    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

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  • June 8, 2009 at 7:05 am
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    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.

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  • June 8, 2009 at 10:30 am
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    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!

    Reply
  • June 8, 2009 at 1:46 pm
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    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!!!!

    Reply
  • June 8, 2009 at 3:32 pm
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    Stephanie,

    Yes! We are it. Me and you.

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

    Reply
  • June 8, 2009 at 3:39 pm
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    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!

    Reply
  • June 8, 2009 at 9:24 pm
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    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

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  • June 8, 2009 at 9:35 pm
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    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.

    Reply
  • August 13, 2009 at 11:11 pm
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    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:

    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!

    Reply
  • September 29, 2009 at 10:32 am
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    I think that the most important thing we can do, as a start to make ourselves be heard, is to become very informed on the disease itself. We all need to be aware of what is going on with our bodies. The more in depth our presentation is—the more the people will listen.
    There has to be an actor/actress out there with RA who can help us to get the word out.
    These commercials with the actresses and actors on the new biologics have got to be stopped!!! People see these commercials and automatically assume they are miracle drugs. That’s all I hear from family and friends, “have you tried the treatments on the commercials”? Those commercials make it seem like once we have the treatment we will feel as good as new & feel like dancing.
    I don’t know about any of you, but I have tried Orencia and Remicade neither of which worked for me. Now I am on Enbrel, it has made some improvement in the quality of my life, but I don’t feel like dancing!!!

    Reply
  • April 21, 2010 at 8:24 am
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    It is through you,Kelly,and the other wonderful folks that I have met since my diagnosis,that I have found my voice to speak about RA.It is my hope that if just one person really hears what I am saying that they will pass it along to one more person.ANd so on and so on.

    Reply
  • April 21, 2010 at 9:31 am
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    First off let me say, I watch the movie Horton hears a who, about 15 times a week, since right now, this is my son Konnors favorite movie. 🙂 Your blog title made me smile. You are right! We do need to take a stand and let our voices be heard. I’m not sure if you realize it or not, but you have given many the voice to speak up. I personally was raised NOT to vocalize my pain or to be labeled a “whiner” by my family. I was told by my mother at a very young age that if you speak of your pain, you give it power over you. This became my mantra all through my life as my chronic pain steadily became worse and worse and I did not mention it to doctors. In Dec. I finally broke. I couldn’t handle it anymore. The toll of sucking it up was too extensive emotionally and physically and my home life and work life was suffering. I HID IT SO WELL THAT NO ONE KNEW. No one knew that I would wake up two hours before my shift started to cry and sit on the edge of my bed to work up the energy and motivation to stand. No one knew that when I came home after work, after sitting for 15 minutes it felt like ever part of my body “locked up” Feet felt like I was walking on gravel bare-footed, ankles,knees,hips, back shoulders,neck,elbows, hands.. everything screamed in agony. But I would put the “happy face” on. Sometimes I would slip and snap out responses, but would pull the calm back, breathe, and apologize. I have not seen the doctor since finding your site, Kelly, but now that I have found my voice, I’m wondering if my visit will be different? If I will be treated differently as if my pain is valid, and not just passing? Since I was not asked history, I am going to try to volenteer the information to see if she responds or just dismisses me. We shall see. Thank you for giving us a chance to be HEARD. Not just placated, or UM-HMMMD. I would love to organize a walk in my area, but have no clue as to how I would get something of this nature started. Who would I contact first? Do I need permits? Since I am not a non-profit organization, wouldn’t I need permission from one to whom the donations would go to? If anyone has any answers please email me or message me on facebook. Thank you for being there. Thank you for listening. Thank you for providing such important information! Kelly, words cannot express how much you have done for so many!

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    • April 21, 2010 at 6:13 pm
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      That’s so cool. I have 2 of the t-shirts. That’s how I made the photo.

      Reply
  • April 21, 2010 at 9:58 am
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    Is there some sort of a walk for auto immune diseases?? I still think RA is a confusing title. I would just be happy for the moment if the name of the disease was changed?? Seems that is where a lot of the confusion comes from when I am talking to people. I have never met not even one person who knew that it was a auto immune disease.

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    • April 21, 2010 at 6:17 pm
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      Hi Nikki,

      Let’s see – Arthritis Foundation does walks, but they are for “arthritis” generically. Some people with RA do get involved in those locally tho. In the UK, there is a National Rheumatoid Arthritis Society, but not here.
      Your comments about the name of RA – Yes, I’ve heard that a thousand times. Most people with the disease tell me they want a different name for RA. Too bad we don’t get to vote on it. Haha. 😛

      Reply
  • April 21, 2010 at 10:59 pm
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    Thanks to your efforts, Kelly, many more of us ARE being heard. Not just among ourselves but also by family, friends, the general public, doctors, and other healthcare professionals. As we gain understanding through sharing with each other and educating ourselves, we are gaining in strength to speak more loudly and frequently and clearly than ever before. You have done so much for so many of us. Thank you!

    Reply

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