Managing Rheumatoid Arthritis: Transparency and the Wall

Managing Rheumatoid Arthritis with friends

This post is an answer to my dear friend from Oz:
She writes about wondering why, as a woman managing Rheumatoid Arthritis, I am usually so private about my health issues. She also praises me for “coming out” to write this blog. She wonders whether I had to overcome “false pride” as she did.

Wow. I never thought I was “coming out,” so I thought about your letter all day. I did not ever try to keep my Rheumatoid Arthritis in the closet. (It is much to large to fit in there.) So, I am glad for the opportunity to explain how I got to be where I am.

No, dear friend, the reason I answer, “Fine” when asked about my health is not pride. I do not try to hide the Rheumatoid Arthritis. There are more complicated reasons for the lack of openness with certain people. I have always been willing to be honest about the RA, so blogging was not a giant leap for me. I love to share and network with others who are searching or hurting.

RA Warrior goals

Now is the time when I will actually do what you thought I did already: be transparent when it is uncomfortable.

When I first got sick, I used to try to explain why I could not do things anymore. But people did not understand because they do not know about RA. People who knew me before I was sick did remember how I had been so agile and strong. However, nobody here knew me – since I moved here right before I got sick.

Sometimes, I was hurt as much from reactions to Rheumatoid Arthritis as from the RA itself. Reactions I have received include cold silence, changing the subject, comparing Rheumatoid Arthritis to a hangnail, and laughing out loud, “Yeah, right, like you are old enough for arthritis!” I was encouraged to get over it.

I could write a book – No two books: one book about the way I have been treated and a second one about all of the other RA folks who have told me the exact same stories. That’s right! We actually swap stories because we trust each other.

My humble goals

Anyway, I won’t ever write those books. Instead, I will put my energy into making a difference. My humble goals:

  1. Education of the whole world about what RA really is.
  2. Helping a few RA patients to get more out of their lives.
  3. Be one tiny (but bright and shiny) dot in the “connect the dots” puzzle of curing RA.

So there you have it, my little friend in the sparkling red shoes! It isn’t pretty. It isn’t pride. It’s plain old self preservation that made me do it. Just managing RA the best I can.

I promise I’ll do my best to follow my own advice: share with those that will listen, but not feel responsible for others’ denial. Sometimes, that denial is a wall that is too high to scale. Didn’t I tell you that I have a disability, after all?

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/

11 thoughts on “Managing Rheumatoid Arthritis: Transparency and the Wall

  • May 21, 2009 at 8:52 am
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    Hi Kelly,
    I’m the mom of Julia of Julia’s Journal. Your daughter found my daughter’s blog and left a nice comment. They have a lot in common.
    I, too, have RA for 12 years now. I am so sorry to hear that you are not doing well. We homeschool and used to live in the same state as you do.
    So nice to “meet” you!
    Blessings,
    Gloria

    Reply
  • May 26, 2009 at 8:34 am
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    Thanks Gloria,
    Seems like we have a lot in common.
    Love your snow pictures – that we don’t have in common. I am in Florida!
    But I love snow as much as I do the beach!

    Reply
  • May 14, 2010 at 11:27 am
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    Hi Kelly,

    I learned the same lesson, having been diagnosed at 22 and having severe enough RA to warrant getting both knees replaced at 26. I learned quickly to just be vague, say I had joint problems in a tone that didn’t particularly invite questions, and deal. Otherwise a question or two becomes an entire conversation explaining RA vs OA, different treatment options including the latest quackery, and the inevitable “but you’re so young!” as if that actually made a difference to RA. Like you, I could write a book or two about these encounters.

    Reply
    • May 14, 2010 at 9:00 pm
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      Mary, I love your way of putting that: “a tone that didn’t particularly invite questions, and deal.” Wanna collaborate on the books? ;-D

      Reply
  • May 14, 2010 at 1:10 pm
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    Kelly,

    There’s the old saying- “If you’re not part of the solution, you will be part of the problem” With your blog, you are now part of the solution- helping us deal with RA and helping others to learn about it. Dorothy faced all sorts of challenges on the yellow brick road. Your blog helps us face our own RA challenges.

    Sally

    Reply
    • May 14, 2010 at 9:02 pm
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      Sally! :-)) My friend who wrote me the letter reallly is named Dorothy. I love your extension of the analogy! Thanks.

      Reply
  • August 31, 2010 at 10:51 pm
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    Thank you for your blog…I have had RA for about 15 years and it has gotten progressively worse. I just got approved for disability because I can’t do my job anymore, I’m a Realtor. One of the hardest things is that no one understands. They all knew me when I was an active, successful Realtor, and now I think everyone just thinks I’m being lazy and don’t want to work anymore because I’m 59..It really does take a toll on me, and I don’t have any health insurance, and am trying to get Humaira from the company to try. I’m nervous about trying the biologics, but am willing to try anything to feel somewhat normal again. It’s nice to know I’m not alone and some people do understand what I’m going through.

    Reply
    • September 1, 2010 at 7:57 am
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      Hi, Anna. Most people get a lot of improvement from the Biologics – good luck with the Humira people. You are definitely not alone.

      Reply
  • October 10, 2011 at 8:47 am
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    Hello, Thank you for the article, as i have struggled with this first hand, I am on disability and my RA doctor told me i have the worse kind RA as it never really lets up i basically hurt everyday as a lot of us do, but i have a sister who is a RN AND EVERYONE IN THE FAMILY LISTENS TO HER, she tells everyone i should not be on disability that RA is just a little worse than other arthritis, What that means i have no idea, but it shows the ignorance about RA, IM GLAD YOU SPEAK FOR LOT’S OF PEOPLE WITH RA , HATE TO USE THE WORD VICTIMS BUT THAT HOW I FEEL AT TIMES,
    Kevin

    Reply
  • July 24, 2014 at 5:36 pm
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    Hi, thanks for your post. I have Lupus, not RA, and I experience much the same outward reactions you and others have described. It takes courage to put it out there everyday when you feel like **** and the response is unsympathetic. I, too, often say Fine even with friends because I don’t have the energy or stamina to do otherwise. Speaking up and educating as one is able is the one thing we can do about chronic illness.

    Reply
  • August 1, 2014 at 2:44 am
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    I found your blog a while back and am “catching up” a lil each day, reading & relating to many posts. I have found that I have so much in common with you & all the others.

    I can so relate to “the wall. I had a difficult time telling people, friends, of my RA diagnosis. Also, I had a really hard time “letting myself” apply for disability, like that was the point where I “gave in” to my disease. I now realize these were classic denial stage of grieving feelings Funny, I’m an RN but I still had a hard time with “coming out” & this is a testament to just how prevalent, long standing & deep these stereo types run about chronic illnesses where we “dont look that sick”. I am so tired of the sneers when I park in the handicapped parking, using the motorized carts or having to repeat my requests for a more comfortable chair, etc, etc, etc. so I am learning how to ask. One of the hardest things for me is wanting to do things for myself because its so true, the quote about “if u want something done right,…
    I still cant seem to get my family to grasp the physical RA. I think at times its a lofty goal to expect them to ever understand or appreciate the emotions, depression & grieving side of RA!!!
    Like a true RAW, I will fight on for awareness & acceptance, both for self & for others!!! Keep up the good fight!!! -Mel

    Reply

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