To Tell the Truth: Will the Real Rheumatoid Arthritis Please Stand Up?

Swimming with dragons

swimming kellyThis RA Warrior is a dragon slayer. There is one particular dragon who is my arch enemy. It is the mythical version of Rheumatoid Arthritis.

I imagine that as it deceives people about Rheumatoid Arthritis, there is less concern about whether a cure is needed for the real RA. The mythical version of RA is probably not a stranger to you. However, let’s warn any newbies among us about what it looks like.

The mythical RA versus the real RA

The mythical version of Rheumatoid Arthritis is a few aches and pains mixed in with a large amount of lethargy. It also includes some stupidity about medical treatments and how easy it is too cure anything at all today. Finally, the mythical RA tends to infect people who have no ambition or self esteem, but try to get attention and assistance by acting sick.

I know none of you has the mythical version of Rheumatoid Arthritis. I don’t either. That’s the reason so many of us reacted the way we did to the Woman’s Day article this summer which treated RA a bit lightly. It seemed that the writer was confused about the real RA.

Fighting the misperceptions about Rheumatoid Arthritis is one front of our war because the mythical versions of Rheumatoid Arthritis just don’t raise much concern for a cure. There is no need to spend lots of money doing research to cure whining. And meanwhile, since people don’t know the truth about the real RA, they may not afford RA’ers the assistance that they require one on one.

This RA Warrior is also athletic. However, the real Rheumatoid Arthritis makes it fairly impossible to express that characteristic. But, today, I got to do it a little.

I got to swim for a few minutes. I absolutely love to swim. I taught myself to swim when I was 18 years old in order to conquer my fear of water. (I had been pulled out of the water by a lifeguard when I was 10.)

One day, I swam 110 laps in my mom’s pool. Of course, a lap was only 7 strokes. I would swim every day of my life if I were able.

Today, I swam a few light laps until my shoulders and elbows could not take any more. Then, I rested in warm sunshine. When I knew it was my last chance, I got back in the water to see if I could do just a bit more. My hip would not let me kick, so I swam a couple of laps pulling my left leg as a dead weight. It was my choice. I was ecstatically happy to do that.

Why?

Because I am not lazy or lethargic. I am not stupid, unmotivated, or whiny. I have the real RA which fights my athletic desires. And I fight back like a warrior. And always doing the best that I can is who I really am.

And, by the way, if you ever see me sitting on a sofa with my feet on a pillow, I am still doing the same thing: I am doing the best that I can do. But, you can bet I’d rather be swimming.

(If you have not read the fantastic comments posted by RA Warriors on the Woman’s Day website, you should! Here is a link. I just went there again and it reminded me that the readers of this blog are topnotch!)

Note: Please see this follow-up video: Woman’s Day Rheumatoid Arthritis Article: A Video Appeal!

Want more Warrior?

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/

26 thoughts on “To Tell the Truth: Will the Real Rheumatoid Arthritis Please Stand Up?

  • August 21, 2009 at 8:54 am
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    You have spoken the absolute truth for so many of us! Thank you!

    Reply
  • August 21, 2009 at 1:02 pm
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    RA has it hardest effects on women, many of those mothers in their 30s and 40s. Hollywood and the media do not give women who have RA enough credit for their accomplishments. There are celebrties suffering from RA,and other autoimmune diseases, we just do not hear enough about it. If we did, then RA would be known and we would be closer to a cure. I wish the media and Hollywood understood how important awareness is.

    Reply
    • April 21, 2010 at 1:01 pm
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      I am soon-to-be-single mother of two young children and am also newly-diagnosed with RA. The fears are overwhelming, and yes articles like those in Women’s Day don’t help. I am fearful of how to help teach my six year old to tie his shoe when there are days I can’t grab the laces. I can work through the pain but I’m talking about the physical inability to simply put my fingers together. I worry about what will it be like in five years for us? I can’t even imagine ten years yet. The biggest problem I face – we all face – is when the information given out to the general public is so misleading. How do you overcome the biases and stereotypes they create? I am actually afraid to tell folks outside of my immediate family about RA – there is too much at stake right now. I am grateful though: for the fear of being denied coverage because my ‘pre-existing condition’ and for the RA Warrior – preparing me to fight the battles yet to come. Thank you.

      Reply
      • April 21, 2010 at 8:22 pm
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        Beth, That is a lot to handle, isn’t it? There are no easy answers to overcoming the stereotypes about RA. Sometimes I call this the PR problem of RA since I can’t think of another name for it. I’m determined to do all I can to change it.

        The only thing I can tell you as a new patient is to inform yourself as much as possible, try to get connected with others, and face one day at a time. Make one decision at a time about medicine or who to tell or anything else.

        Hopefully, when you are better established on treatment you will be able to help the little ones more on most days. On days you can’t do as much, it will be hard, but there will be a way somehow. I can say that my kids have become very sensitive to the needs of others & very thoughtful people, in part because of my RA. I’m not glad about the RA at all; I’m just telling you that it’s good to be hopeful that it won’t be all bad. Take care.

        Reply
      • March 21, 2011 at 7:48 pm
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        Hi Beth,

        I remember going through a similar process after being diagnosed over a decade ago. Although I must admit, I’m not a single mum, but I did do a 12 month stint with two boys under 4 yrs old by myself while my husband was a volunteer overseas. It’s hard work and don’t expect the RA to do you any favors!

        However what I can tell you, 12 years since I was diagnosed, is that while my joints have changed a lot, I have lots of lumpy bits and more joints are involved and things are difficult, the pain level hasn’t increased for me. Don’t get me wrong, it’s painful, but I’m much better at managing it now and knowing when to stop and how to maximise my pain meds.

        It took five years of different drugs and two different Rheumatologists, before i came up with my own best practice, but I got there.(although I never stop looking!) I’m confident that you will find what works best for you too. We’re all different, so my experience is likely to be different to yours. Plus I’ve taken a path that avoids methotrexate and dmards and biologics – who knows if that was a good idea! I certainly don’t.

        It’s 12 months since your post that I’m replying to. How have you been going in that time? I hope it’s not been too bad.

        Cheers

        Tracey

        Reply
  • August 21, 2009 at 7:52 pm
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    Good ideas, guys.

    I will have to check this suggestion out along with ya'll. We'll keep in touch about how it goes…

    LILI: You are so right. Let's all push as hard as we can toward the media, the medical profession, and everywhere else.

    Reply
  • August 22, 2009 at 9:09 am
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    We have some celebrities with RA, but still get no recognition from the media. I think our disease will come into the spotlight soon.

    I'm glad you got to swim, I have also been active my entire life and it sucks having to give up some of that control over what I want do to RA.

    Reply
  • March 29, 2010 at 12:28 pm
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    Kelly I get so frustrated when I read some of these article. People have got to get informed!! But how??? The general public is not aware that there are so many different levels of RA. Plus the general public needs to be informed that the new biologics are not the miracle drug that they thought! Some RA patients aren’t even responding to the new drugs.
    Yes people can go into remission—doesn’t mean they will always stay in remisssion!!!!
    Yes some people have mild forms of RA, they can be managed by MTX alone!!!
    Yet some people are in wheelchairs due to RA! Some people have had several joints replaced due to RA! Some people are on more medications than you would think humanly possible without damaging some other parts of your body!!!
    We have to put our minds together people!! WE are strong!! WE are brave!! WE fight a battle everyday of our lives, hoping and praying for remission!!!
    I can speak for myself and I know many others too when I say I was an exceptional worker, a hard worker, and a loyal worker, I would go in on days off if they called me.
    I resent the fact that I have read we are called lazy or weak.
    Something has to be done. Seriously!
    Just like you said Kelly–look at cancer! Do you realize how many forms of CA there are, do you realize how many are seriously ill and can barely function due to CA, and there are those who have CA for years upon years without symptoms. These are my points! There are several stages of RA! Several forms of RA!

    Reply
    • March 29, 2010 at 12:54 pm
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      Sheila, I was thinking similar thoughts this morning. Thank you for saying that so well. God bless you, Lady Warrior.

      Reply
  • September 15, 2010 at 7:39 am
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    I LOVE this page!
    I was a State-class gymnast; a Varsity diver and studied Classical/Russian Ballet for nearly 23 years. I went to grad. school. I am TYPE A!!!!!!!!!!!!!!! And you are SO correct! We are not weak, nor do we seek pity. Regardless of our histories ( disparate, I can only assume): we ARE warriors.

    Thank you for writing about this. I miss the barre and my pointe shoes as much as I miss anything we give up; sex (very happily married for nearly 10 years, but pain gets in the way far too often); hunger; sleep- the lot. But mostly, I miss the discipline of my body- she listened and I took it for granted. I look forward to the day when I can get back in a studio–I might not be able to rock a triple en pointe, but I WILL get there.
    THANK YOU!
    Peace,
    Nicole

    Reply
    • September 15, 2010 at 1:47 pm
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      Thanks, Nicole. I “miss the discipline of my body,” too. What a good way to put it.

      Reply
  • October 14, 2010 at 12:16 am
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    Dear Kelly:

    Your essay makes clear that every RA sufferer is an athlete by default. The disease forces every patient with RA to battle against it physically. How daunting, yet how triumphant your spirit! Thanks for sharing your story and making RA more understandable to those of us who aren’t RA warriors.

    Carmen

    Reply
  • May 12, 2011 at 4:00 pm
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    The mythical version of Ra is an insult to those of us who suffer from the real thing. What about all of the people who don’t get any improvement from methotrexate, the biologics and the two oral medications? What about those of us who can’t have any of those medications? It’s been 5 years since I was able to receive treatment (none of the treatments were effective when I could receive them (methotrexate, biologics and the oral treatments). I am a fourth-course RA sufferer according to your article; I’ve never had a remission or I’ve had a 7 year flare. While my joints are affected from the shoulders down, my feet were attacked the hardest. My ankles are very deformed and have little movement, I’ve had chronic Achille’s Tendonitis for over 5 years and now have golfer’s tendonitis because the inner elbows are affected (the tendons even stick out). My left side is the worst side (I am right-handed) although both sides are affected, down to the specific fingers and toes that are becoming deformed the worst. It feels like the second and third toes on both feet are being “pulled straight out” when I walk and the underside of my heels always hurt; just having them resting on the floor hurts. I can’t have chemo or the biologics because an infectious disease doctor colonized me with MRSA (got that from a local hospital during what was supposed to be a day surgery but turned into a 4 day stay) and Pseudomonas (I was infected from that repeatedly for some reason) and the oral medications give me Acute Pancreatitis. I can have short course of Prednisone when the inflammation is so bad that there is a risk of my circulation being cut off. My rheumy mentioned gold as a last option but the side effects look ugly. The only good thing is that it is not associated with causing infections. I live alone, have no help but get by as best I can. I saw my Rheumy on 5/2 and was inflamed everywbere. He couldn’t give me anymore Prednisone because I got a fungal infection from the injection form of Prednisone followed by a 3-week course. I sleep in one hour to one and 1/2 hour spurts and have to get up because of the pain in my ankles, knees, etc. I sleep on my right side only (haven’t been able to sleep on left side since Fibromyalgia hit after surgery to remove my bladder due to severe Interstitial Cystitis in 1994) and use a pillow to rest my arm on and that keeps my shoulder from hurting from being the lack of support. I’ve found a way to put my right hand in between two pillows in such a way that it doesn’t hurt and have to find the ‘position of the day’ for my left hand on the pillow. I use the electric carts at the stores. What a blessing they are! I was only getting enough food to get through the next day or so until the pain of being on my feet drove me out of the store. This way, I can get what I need for a week at a time. I have a cart to load it into at home so I can roll it up to the house and inside, right into the kitchen. I received my Disability (I’m 52 now) without a hearing when the judge read my case and approved my case on 10/31/06 with the disability date of 10/30/04. The only treatment available to me currently is pain meds. I also have Lupus (the treatment for Lupus is the same as it is for RA), Gastroparesis and a laundry list of other ailments/diseases. I can’t have the oral anti-inflamatories because they sit too long in my stomach due to the Gastroparesis. My son (an only child) cut me out of his life and won’t let me see my grandchildren because he thinks I’m on too much pain medication (no one would even know that I was on pain meds by my demenor). My rheumy doesn’t think so; in fact, he told me to stay on it as it will provide the only relief available to me. People who do not have RA can’t grasp the suffering and how every aspect of your life is affected. My former Medicare replacement plan was for chronically ill patients and I was rated a level 3; primarily housebound. I am alone about 98% of the time (except for my dog) and don’t leave the house for days on end. I keep in touch with friends by phone (speakerphone was a wonderful invention) and I get much more time with the Lord then most people do each day. I am not angry about any of this illness; for the people who say “Why me?”, I have to say “Why not me?”
    Thank your for all of the hard work you do to provide this wonderful website, not to mention that I derive so much comfort knowing that you and all of the people who participate with their RA stories and comments understand what we are all going through and that is not easy to find. Thank you!

    Reply
  • October 25, 2011 at 6:54 pm
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    Thank you for writing this.

    To have RA is a challenge. What do you do when you can’t do your job any longer bacause it is so hard on your body? Moving on, living with frustration, finding emotions that go beyond angry and sad. That is where I am at today. Biologic medications that have been a miracle, still have devastating side effects. Beyond fatigue, immune suppression, rashes that will not clear, you still have difficulty finding a position of comfort for more than one hour without waking up, you can function, but still have to pay the price for the energy it taks to do something out of the ordinary. People who don’t have RA can’t grasp what this is like. Having RA makes everything you do a choice that you have to weigh in your mind. Stairs today, joint flare in my knee tommorow? Work 12 hours, then be exhausted for 24. Not just tired, exhausted.

    I am standing up, and it is real.

    Reply
  • January 4, 2012 at 7:39 pm
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    i am a newly diagnosed late onset RA sufferer, i am 64 and i am scared. i have found this website very informative and helpful, thank you

    Reply
    • January 4, 2012 at 9:37 pm
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      I’m so sorry you are scared Eileen. What is worrying you most?. Maybe your RA will not be terribly bad – I’ve read that often, when someone is diagnosed after age 60 or so, the disease is less aggressive.

      Reply
      • January 5, 2012 at 12:12 pm
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        thank you for replying Kelly, i am also a PMR sufferer. i remember my dad, he was totally incapacitated by the time of his death at 74, he couldnt walk, use his hands etc, i have been told that i will not get like this, times and medication has changed since his day, but the memories linger. he was diagnosed in his 40’s as was my sister, she walks with sticks and has just been given a wheelchair. i have it in my hands and also having trouble with my feet. it is quite hard to distinguish just where i have it because of the polymyalgia which is kept under control with steriods. i am also on methotrexate and have been for 6 months now, it seems to be working although i have been recalled for more blood tests as something in my liver is reading high all of a sudden.
        after reading the stories on this site i feel quite ashamed for moaning, the pain some people have and are suffering puts mine in perspective, at least i did not have this when i was young.
        i was advised to go to this website from the PMR forum and am glad i have found it.
        again thanks for responding so quickly, i am english but have homes in both england and spain, so i escape to the sun whenever i can, which does help, whether it is phsycolicagal or not i do not know.
        best wishes
        eileen

        Reply
  • February 18, 2012 at 7:07 pm
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    The myth ‘a few aches and pains with a large amount of lethargy’ is so true. I don’t have RA, my partner does. He had numerous symptoms for just under 10 years, with constant trips to doctors getting nowhere. Familly members were frustrated with him as he was unable to function properly that affected his ability to work and as the doctors weren’t able to work out why his knees were swollen, why sudden lumps would appear over night and then disappear as quickly and why he had no energy, it was seen that he was just ‘depressed’ and lazy. This had a massive impact on his relationship with his ex-wife who was of the view that he was just being irresponsible and selfish because he was not working and was unable to do much as he wanted with their children. The disease has progressed considerably in the past 2 years, however at least now it has been diagnosed, yet the medical treatment has been ad-hoc and dis-satisfying. I still am of the view that his familly don’t understand what RA is and what impact it has. For a while, because it took so long to get diagnosed, I started to doubt him aswell, but deep down I knew that something just wasn’t right. I feel sad to see him in so much pain and has so much difficultly in doing normal everyday things as he has so little energy.

    Reply
    • February 19, 2012 at 10:12 pm
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      Barbara, thank you for being here and spending time to post on his behalf! Your description applies to so many of us – with people underestimating the effects of the disease and the treatment being so “ad-hoc & dis-satisfying”! It is so hard for people to imagine it’s so bad when they can’t see it, but it is.
      Hopefully, it will not continue to progress so quickly, but he needs a dr who will aggressively pursue finding a treatment that will moderate this disease. I know it’s frustrating but he needs someone who will keep trying with him. Btw, there will be another guest post soon from David which your friend may want to read.

      Reply
  • August 10, 2012 at 1:32 am
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    I can’t thank you enough for creating this website. I will started following your facebook page and will continue to catch up and read updates from wawarrior.com

    Diagnosed with JRA at age 10, very severe, lasted a few years and calmed down.
    Hard to tell right now how bad it is. I’ve dealt with it for so many years that I can’t remember what normal feels like.

    I know in the past two years it’s been exhausting.
    After reading only one article I knew I had been vindicated!
    But it doesn’t end there. And that’s where this web page comes in and the team work behind the web page. I thank you.

    Lori

    Reply
  • August 28, 2012 at 4:13 am
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    It would be great if we could all golf or play tennis but we can’t who has that kind of time .The dr appt alone could messes up a good pratice schedule than there is the time spent wondering what I am doing while I m laying around in bed wishing I could be the woman I used to be.The count less days spent in pain and pushing myself to my full strengh walkin out to the car to take my son to practice sitting in the heat and later in the cold watching him play football.I know I look like I can Do it All but after1w years of this I fake it pretty good and I try to endure with a smile.No one wants to be arround a complainer so I smile and listen to the other guys prroblem.Tennis will just have to wait

    Reply
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  • March 9, 2017 at 8:27 pm
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    May God bless you and give you solace and comfort. I too have RA, but am fortunate not to experience the complications you are battling. However, my sister also has RA, more like the disease you describe. In many ways, it truly is a different disease for every patient.

    Reply
  • March 20, 2017 at 2:57 am
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    I am somewhat new to the website (Can’t THANK YOU enough Kelly!! It’s now my go to for reliable info! Lol) but almost 3yrs into my severe unrelenting RA DX and life is falling apart, filing short term disability tomorrow, to try and keep Actemra injections on board right now? Still wanna try and keep working!! Knowing they may not help! But feel like I HAVE to try and get my life back! And I completely agree with the NEED for recognition, education, awareness and am against the Woman’s Day article, BUT there ARE people out there that “claim” to have this disease that don’t! Which I can’t even fit it in my head, why someone would do that?! But I have a co-worker that does!! It infuriates me?!?! I REALLY believed her when I first started working there and asked her who her rheumatologist was?! Truly just out of curiousity?! She says, well mine isn’t advanced enough (bcuz she doesn’t have any “visual” signs) to be referred to one yet? Naive as I am I still believed that! Lol! However after watching her come to work in stiletto heels EVERYday! Always made up to the 9s and knowing what I know now, I’m certain she does NOT have RA! Seems to me that after I get a migraine from the arthritis in my neck or tell her the results of my MRI, suddenly ALL the things she has “mimick” mine EXACTLY too?? even though other co-workers say, she claimed to have RA, before I started working there?! In fact…those co-workers really don’t believe that RA can make me “as sick” as I am, cuz she has it, and she’s “ok” so why aren’t I? Is more how it goes??? So it’s extremely frustrating and I have it terrible, and am the one undergoing treatments, YET I am the one under a cloud of suspicion!! Because of her lying about having it?? It is SO frustrating for people who really don’t have it to say they do? I KNOW ALL of us on this website TRULY do! But I also know my co-worker doesn’t! Lol! It’s like someone saying they have cancer when they don’t! ?? I guess she’s just doing it for attention? But it has caused more problems for me?! And I just don’t get people! I LOVE the website! And appreciate being able to post this to fellow warriors who “GET IT”!! Lol! Here is wishing more good days than bad to ALL! :-))

    Reply

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    Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Disease. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.

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