Our RA Onset Stories Matter

8 New RA onset stories

smoke over road

We’ve just added eight more stories to our RA onset story pages. Even with all of the stories and emails that I’ve read from people with RA, several hundred I’m sure, these new ones affected me. I laughed, cried, nodded knowingly, and was even surprised a few times by something new.

Some common themes in the stories:

  • Years without knowing what’s wrong.
  • Waking up with something new hurting every day.
  • Not mentioning how bad it hurts because no one understands.
  • Surprised to be so suddenly disabled after being so strong and healthy.
  • Family members with RA.
  • Medications working differently in each person or not working at all.
  • Days or months passing by and not being able to move.
  • Compassion for others who are suffering.
  • Being determined to overcome the pain, to live your life.

Each RA onset story helps

Every story has its uniqueness. I even read for the first time about an onset of RA that is exactly like what is described in textbooks. However, together the stories also provide a clearer picture of RA. I am convinced that our own voices, telling our own stories is the only way that the reality of RA can be known. When the depiction of RA onset is more accurate, then diagnosis will be easier to obtain.

Recommended reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

5 thoughts on “Our RA Onset Stories Matter

  • May 18, 2011 at 11:05 am
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    I was diagnosed with RA in June 2010. I’ve been reading RA Warrior for about 6 months and am amazed at the time it took for people to be diagnosed with RA. I’m very lucky I was diagnosed within 1 1/2 years with mild symptoms and a couple of really bad flares. My Rheumy is very considerate of my pain and suffering. I have been very blessed with this in seeing what other people have had to go thru to recieve proper diagnosis….This site helps me everyday I read it…thank you Kelly for all your work and information about RA I had no idea what RA was and what I was going to be in for when I was diagnosed. This disease has turned my life upside down. Other people don’t understand it and like others I don’t really say much about it except to close friends that have RA or Lupus because they are the only ones that understand what we go thru, Daily!!!!! Keep up the wonderful work!!!!

    Reply
  • May 18, 2011 at 11:19 am
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    How long do the onset stories need to be and how do we send them to you?

    Reply
    • May 18, 2011 at 11:28 am
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      Thank you for asking. Click on RA Stories on the menu at the top of the site to read about how the stories work. They are emailed to me and then I contact the sender if more info is needed.

      Reply
  • May 18, 2011 at 2:10 pm
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    I love to read the onset stories. It was a brilliant idea to include them on your site. These kind of stories need to be a part of a doctors education. They should also be read by researchers,the ACR, anyone who is involved with inflammatory diseases.

    Reply
  • Pingback: Rheumatoid Awareness Day: What Causes RA / RD?, Links, and Stories of Recovery - Tumbling the Stone

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