“Dealing with RA Is So Much Easier than Lupus” –Kathy Lubbers | Rheumatoid Arthritis Warrior

“Dealing with RA Is So Much Easier than Lupus” –Kathy Lubbers

What causes the RA awareness problem?

Redskins' T-shirtEvery day, people ask me, “What can I do to help create awareness for RA?” Many suggest, “We need to find a famous person with RA.” Maybe first, we need to think about why we need awareness for RA. Why do people have such a wrong view of Rheumatoid Arthritis? Where did the Grand Canyon come from that separates the real RA from conception of it that most people have? And why has it not helped at all there actually have been famous people with RA?

I’m not sure how to solve this mystery, but we need to.  I would like to hear your ideas. If you blog about this, please leave a comment or a trackback so I can follow that. Here are some contributing factors I see.

  1. Articles on the internet giving bad information on RA.
  2. Bad choice of words to name the disease.
  3. The symptoms of RA are often invisible.
  4. RA can be confusing because the symptoms can vary by patient or over time in the same patient.
  5. Poor training of some doctors.

The other day, I had one of those moments of revelation when you get a glimpse of the way that things are seen from the outside: Into the Google search box I type “Rheumatoid Arthritis somethingorother” and results popped up. What? Newt Gingrich’s daughter has Rheumatoid Arthritis?

Click. Scroll. Sigh.

So what if Kathy Lubbers says she is “thrilled” she has Rheumatoid Arthritis instead of Lupus?

According to a story on Health.com, when Kathy Lubbers was diagnosed with Rheumatoid Arthritis, she says, “(I) talked to my new doctor about my lupus, he said, ‘Honey, you don’t have lupus, you have rheumatoid arthritis.’ I was thrilled! While painful, RA is an easier disease to deal with on a day-to-day basis.”

I don’t know if Kathy Lubbers said it exactly that way. I’ve been interviewed myself. As a matter of fact, I’ve been interviewed by Health.com. So, I know that things can sometimes read a bit differently than they were originally stated.

So what if this is the way RA is presented?

What effect do you think it has for people to read that someone is “thrilled to have RA”? It can’t be good, can it? So what if…

  • A famous person gets RA and hides it, like Lucille Ball?
  • Or Kathleen Turner was criticized widely for making glib comments about RA.  In 2002, she and a doctor were interviewed: “Turner says she takes Celebrex with Minocycline. ‘Ms. Turner was quite sick and now she is doing quite well,’ reports Trentham. ‘The drugs she’s taking are good for her and aren’t so financially prohibitive.’” Turner is “more active than ever and she says, “I think they’ll find a cure in my lifetime…The earliest you can test for arthritis — do it. It’s just a simple blood test.”
  • Phil Mickelson gets Psoriatic Arthritis and says, “So I’m not very concerned about it”?
  • Deborah Norville, whose mother died as a result of Rheumatoid Arthritis, says that RA patients can benefit greatly from watching her videos because she thinks her mom would have benefitted greatly from knowing that eating blueberries could have reduced her inflammation.
  • Or Camryn Manheim says you can just put RA “behind you and live a full and eventful life.” [Edit: this last point added Oct.17th after I re-located the link.]

But this is what the public reads about RA

How does this affect people who don’t know that RA is a serious disease affecting the whole body like Type 1 Diabetes? RA patients with poor functional status have a survival rate similar to stage IV Hodgkin’s lymphoma or coronary artery disease with 3 involved arteries.

According to the Centers for Disease Control, RA is more deadly than Lupus (by numbers of rheumatic disease deaths). In part, that is due to greater awareness and treatment for Lupus in recent decades. Lupus is rarer than RA, but more money is given to research for Lupus. I can’t use a single link to answer to the folly of RA being an “easier disease” to live with day by day, but it would be important to note there are varying degrees of RA.

This quote from Medscape about RA gives a clearer analysis: “RA does not usually follow a benign course. It is associated with significant morbidity, disability, and mortality. Daily living activities are impaired in most individuals with RA. Spontaneous clinical remission is uncommon (approximately 5-10%). After 5 years of disease, approximately 33% of patients are unable to work; after 10 years, approximately half have substantial functional disability. Poor prognostic factors include persistent synovitis, early erosive disease, extra-articular findings (including subcutaneous rheumatoid nodules), positive serum RF findings, family history of RA, male sex, and advanced age. Life expectancy in patients with RA is shortened…”

Postblog: This is not about a contest between RA & Lupus

I want to be clear. I don’t want to argue about whether Lupus is a terrible disease or not. This discussion is about the way RA is presented to the public. So, let’s assume the following:

  • Of course there are degrees of Lupus and there are degrees of Rheumatoid Arthritis.
  • Of course we would all rather have neither.
  • Of course we are not in a contest with any kind of patients. There is nothing to win.

I’ve been reporting for a year and a half on the minimizing of Rheumatoid Arthritis pain and inaccurate reporting about RA. It doesn’t look like celebs are going to bail us out. Today, I’m going to go through the blog and adding an RA awareness tag to the posts relating to this.

What do you think? Do you think the way RA is presented in the Lubbers article or others affects public perception? I know one blog – or even lots of blogs – won’t solve this problem, but if we can figure out where the Grand Canyon is, maybe we can build a bridge.

Recommended reading:

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/

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107 thoughts on ““Dealing with RA Is So Much Easier than Lupus” –Kathy Lubbers

  • January 21, 2012 at 10:09 pm
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    “It’s just a simple blood test” gave me shivers, seriously. I received my first RA diagnosis at 9. When I went into a remission (only one I’ve ever been in, and it lasted maybe 6 months), when the doctor that diagnosed me lost his licence… everything went down hill. I went to specialist to specialist, trying to figure out what this was, when we already knew, all because 2 stupid, unimportant factors made a terrible rheumatologist question my condition. I got my (second) diagnosis at 16, after I’d gone 7 years with no more treatment than a fluid drain and a cortisone shot, after I’d had permanent damage done, after I’d already been put in a position where daily tasks like school and brushing my teeth were nearly impossible. Do you know what lead to that diagnosis? A biopsy. I had a scheduled biopsy and synovectomy. I had the synovectomy scheduled because they thought I had a disease 1 in 2 million people get. “It’s just a simple blood test”. People like that should be smacked. Statements like that make patients suffer tenfold. Either research your disease or shut the hell up about it, but for god sakes, RA is misunderstood enough that we don’t need patients talking like they understand what is happening. “I don’t understand RA, I understand MY LIFE with RA.” And that is something a lot of RA patients need to think to themselves more often.

    My grandfather died of Rheumatoid Lung Disease in relation to his RA. I’m 17 and don’t know if I’ll ever be able to work or go back to school. But all I hear when people talk about RA is how “annoying” it must be, how their grandparents have it, how nice it is that, hey, “at least it’s not terminal!” and how ibuprofen must be god to RA patients! If people aren’t questioning the legitimacy of my disease because of my age (note: I’m definitely sitting lol), I’m hearing a list of myths that offend me.

    Do you know how often people like to COMPARE RA cases? “Oh, I know so and so, and they have RA, and they can still walk 2 miles every morning. If you put your mind to it, you can do anything! You just have to push yourself!” or “So and so has RA and they don’t struggle with walking. Quit exaggerating, it’s pathetic”. And how many people with just-diagnosed, mild RA like to play it off, make it seem like nothing, because they either don’t know better or don’t want to? People don’t realize how holding that “I have RA but I don’t even notice it!” attitude can make some patients (unfairly and illogically) look bad. That’s not fair. If you have RA and feel you’re lucky or not overly effected, be grateful, and remember that presenting this disease as a non-issue is extremely harmful to those that struggle constantly.

    As for being “thrilled” to have RA instead of Lupus, rather than being “thrilled” that your RA isn’t as severe as it could be? I honestly died a little inside reading that. I’m glad that you think RA and Lupus don’t both have mild and severe levels, and think that one is better than the other. Really, that doesn’t make many suffering patients (again, unfairly) look at ALL pathetic.

    Reading articles like this make me wish I was a turtle, so that I could sink into my shell. Reading this sort of thing fills me with so much anger, at all the bullshit RA patients go through that could easily be prevented if people weren’t so damn ignorant.

    Reply
    • January 22, 2012 at 8:05 am
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      Rebecca, of course nothing about this disease is fair. It certainly is not fair that you are 17 and face the ridiculous prejudices on top of the pain & medical issues! I hope we can change the level of ignorance out there.

      Kathy Lubbers’ statements, as written in that article, still aggravate me too. As you said, “If you have RA and feel you’re lucky or not overly effected, be grateful, and remember that presenting this disease as a non-issue is extremely harmful to those that struggle constantly.” I really believe she has no idea. Those rare ones with remission or mild RA do not speak for us and, like you said, make it harder for us. Yes, like you said, I’ve been told “So-and-so can still _______ so you could too” and it hurts.

      Reply
  • January 22, 2012 at 11:14 pm
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    RE: “Dealing with RA is so much better than Lupus”. As I was reading the string related to this post, the Arthritis Foundation was mentioned a number of times, as was the continued perception (even among docs) that RAD isn’t really all that bad – for any of us. It occurred to me that my rheumy’s office is filled with what is essentially pharmaceutical company propaganda. There are posters on the walls, stacks of brochures & pamphlets and even a television – all supposedly there to “educate” the RAD patient. THERE IS NOT ONE BIT OF INFORMATION from any source in my rheumatologist’s office other than those from pharmaceutical companies! I would bet one of the reasons the AF and their magazine downplay the real story of our lives with RAD is that they make a great deal of money from pharmaceutical advertisements trying to sell us a new drug that will “cure us”. Perhaps I’m getting cynical but . . .

    Reply
  • April 4, 2012 at 9:35 am
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    Since I am newly diagnosed within the last 3 months I have heard many different responses when I tell people about my diagnosis. I won’t even recount them here because we have all heard them.

    I think one of the reasons that the facts are not being adequately protrayed is that RA/RAD is not a ’boutique’ disease, or disease of the month. RA is the disease of our grandparents, and great grandparents. How many times did you hear ‘their Rheumatism is acting up’. Just that statement alone from so many years ago suggests that RA is a temporary condition that ‘acts up’ once in a while. The problem of perception with this disease goes back many many years. A new approach is needed which delineates the differences between Osteoarthritis and RA. We (folks with RA) are not old codgers with joint problems. We are a varied demographic of people, young & old, who suffer daily from symptoms that vary from one person to another. It needs to be known that autoimmune diseases like to present to a person in groups, Multi Auto Immune disease (3 or more). I’m not so sure we need a celebrity to get our message across. We have some beautiful, young, outspoken women with this disease. I would love to see one of them become our ‘poster child’.

    Reply
  • April 4, 2012 at 9:46 am
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    Kelly great article, I think that celebrities with RA just play it down as i’m tough and can handle anything, So they want the public to see how strong they are, i wonder how many go to bed at night crying because they can’t or won’t tell anyone how much RA has really affected them , MAYBE OUT OF FEAR OF LOSING THE CELEBRITY, It is not uncommon also for celebs to be narcissistic and IMPOSSIBLE to admit RA HAS CHANGED THERE LIVES,

    Reply
  • April 4, 2012 at 12:05 pm
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    I think celebrities play it down so that directors aren’t afraid to hire them. Nobody wants to make a movie with an actor who may not be able to finish it.

    Reply
  • April 3, 2013 at 1:46 pm
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    In response to postings about crowds, at a recent convention, I left sessions early to get to the bathroom before the crowd hit. Annoying but the only way I could manage.

    Reply
  • May 23, 2014 at 6:46 pm
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    Does anyone go on Answers.com? I looked up RA to see what info they had and under ‘Factors that affect prodnosis’ they say ‘Finally, RA is not fatal…unlike cancer
    , HIV,or other serious disease, RA simply needs to be monitored’!!! I tried to join so I could comment, but for some reason it would’nt let me….I am trying to get the message out about this serious disease…I know I have it but my Dr thinks it’s Fibro so I am getting no treatment so far- tho I am lucky he did give me pain meds…but I’m worried about not starting on the meds I really need!

    Reply
  • June 25, 2014 at 4:37 pm
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    As long as celebrities continue to provide glib answers about the disease, assume because they have minimal disease activity so does everyone else, and don’t have to quit work because of disease progression they really won’t care enough to help us.

    Reply
  • March 13, 2015 at 2:25 pm
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    Two weeks ago I discovered that I have two autoimmune diseases, juvenile rheumatoid arthritis and lupus. I was diagnosed at Mayo Clinic at age 10 in 1996 with juvenile rheumatoid arthritis. A few weeks ago, I was looking over my initial diagnoses from Mayo, and noticed I had a positive SLE (systemic lupus erythematosus). I brought this up with my rheumatologist, and he ran tests that confirmed lupus. Did I have both diseases this whole time? I know I’m experiencing a lot of joint erosion from RA, but how can I have both? It’s rare they say, but I guess I’m one of the unlucky ones. I’m confused, and don’t know what’s going on inside my body and who or what to believe.
    There’s no competition with any illnesses, and more awareness for chronic disease is crucial. I deal with people minimizing my illness, and not believing I’m sick daily, and it’s truly pushing me over the edge. A lot of people think they have a cure even though they have never been to medical school. A lot of people think it’s my fault and judge me because I look fine. I’m tired of explaining, and mostly, I’m tired of having to prove to people how sick I am.
    We all have enough to deal with, so lets all try to keep coming together, and finding answers on how to get to the core of all autoimmune diseases.

    Reply
  • January 15, 2016 at 6:28 pm
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    My personal opinion is that RA should never have been named RA. If it had been RD, in the beginning, it would have been taken more seriously. Not that Arthritis isn’t painful, but who doesn’t know someone with a “little” of it in his/her back/finger/elbow? I stopped bothering to tell anyone, I have RA. Almost always, the reaction is: I have a some of that in my big toe!!

    Well, big toes notwithstanding… I do not have a little of RA in my big toe! I do have a lot of RD from my head to my toes… Does that count?

    Reply
    • January 15, 2016 at 6:34 pm
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      well if nothing else, you made me feel a little better reading that. I always feel like I’m the only one getting these responses everywhere I turn. I’m not the only one & I know better – it just feels that way.

      Reply
  • May 31, 2018 at 6:11 am
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    Kelly,
    Thank you so much for you site and all that you do for educating people on Rheumatoid Arthritis.
    I am recently diagnosed with severe RA. It has been an eye opening experience. Most people have no idea about the progression of the disease and how debilitating it can be. I was unaware of the effects on other organs and the co-morbidities of RA until I became a patient. I am learning to talk freely about the disease in order to educate people about Rheumatoid arthritis. I agree with one of the other comments posted, that since it is under the umbrella of “arthritis” people assume that you take ibuprofen, or acetaminophen and you are fine.
    It takes everyone to spread the word. Your site has helped me to do that.

    Gratefully,

    Catherine

    Reply
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