Rheumatoid Arthritis Awareness Is about Medical Care, Not Sympathy

swollen PIP jointMy Bear had an appointment to see his terrific pediatrician today again about his swollen finger joints. She was home with a cold, but we waited an hour to see an alternate. The fellow didn’t seem to welcome my questions or opinions.

I was in the familiar context of my pediatrician’s office – 6 years with 5 kids – that’s 30 years of service. And I was experiencing the familiar feeling of having someone make inaccurate statements about Rheumatoid disease. However, experiencing the two things together was entirely unfamiliar – and unacceptable.

I successfully suppressed my tearful desire to tell the guy how wrong he was. Care for my son’s hand – or health – does not depend on him, so arguing would be pointless. However, three things became crystal clear:

(1) No doctor can know everything about everything. But there’s one thing that makes ignorance unacceptable: arrogance. A doctor needs to know that he doesn’t know things, so he can continue to learn. Arrogance makes a doctor ineffective, unless he knows everything.

(2) I will not tolerate my son having the incompetent medical care that I’ve had. Remember my mother of a patient voice? If my son needs rheumatological care, he will see a professional that knows more about Rheumatoid disease than he does. It’s long been reported that general practitioners lack knowledge about RA.

(3) It emphasized the great need for the work that the Rheumatoid Patient Foundation (RPF) has begun. As the RPF clarifies to the world the facts about Rheumatoid disease, people in many situations can experience less of such devastating ignorance that can cause confusion or delays in treatment. Erroneous notions about Rheumatoid disease obviously interfere with appropriate care decisions.

But first, I know you’re curious, here are a few of the facts the fellow had wrong:

  1. If an ankle, or knee, is swollen, “it has to be swollen here in this spot.”
  2. “It would hurt and be more stiff in the morning” if it were RA.
  3. An x-ray would help determine whether it’s RA (at this early stage).
  4. Genetic testing gives no help in determining whether it’s RA.

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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/

18 thoughts on “Rheumatoid Arthritis Awareness Is about Medical Care, Not Sympathy

  • January 20, 2012 at 9:21 am
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    “A doctor needs to know that he doesn’t know things, so he can continue to learn.”

    Amen.

    And poor Bear. Was the idiot…er…doctor at least willing to refer him to a rheumatologist?

    Reply
    • January 20, 2012 at 10:35 am
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      we are going for xrays now, Mary. I told him I’d talk to our regular ped next week about what to do next – I think he should have an expert ultrasound to see what is inflammed inside, causing the swelling – if the xrays dont give an answer – and then a rheum would be next – but we’d have to travel to Duke or Johns Hopkins or Alabama.

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      • January 24, 2012 at 5:28 pm
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        Is there a specific reason you would choose to travel that far? Most people do have to travel to a ped rheum because there aren’t many, but you should be able to stay in state or at least adjoining state.

        Our experience is that MRIs come after xrays. Also, even if insurance doesn’t require a referral, you will probably need a physician’s referral to get on a ped rheum’s schedule. Appointments are often months out, so I would recommend starting the process ASAP. You don’t want your son to start really feeling bad and have to wait to be seen. Even if they don’t do anything at the first visit, you will be in the system for follow up.

        Best wishes that everything turns out to be normal!

        Reply
  • January 20, 2012 at 9:24 am
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    Ack … that has got to be beyond frustrating to have to sit in a pediatrician’s office and not get proper care for your child – especially when you are SO well versed in what needs to be done. I can well imagine how that has to feel, both as an RA patient and a mom myself..
    just FYI, I sent an email to register for the survey (for the RPF) and they replied saying thanks and they would send the survey to me as soon as it’s ready.
    Hang in there and I hope you get some *helpful* care for your child soon!!

    Reply
    • January 20, 2012 at 10:37 am
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      Thank you Melissa – I felt like the exam and all the little comments about what is and is not RA – was a joke. But I kept it to myself since he kept interrupting me – I could tell he wouldn’t listen – not sure if I’ll tell my regular ped how it went thouogh – maybe feedback would be good.

      Reply
  • January 20, 2012 at 10:38 am
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    Kelly,
    My heart goes out to you! And I wish I had a dime (cliche, but it fits here!) for every time my daughter and I (and I’m sure many others) felt the same way you did when you took your son to be checked and got that sort of response! My daughter has had a tough few days too, trying to find comfort and good care for her daughter who has been in so much discomfort lately–and, as you know, we ourselves can suffer much, but our biggest suffering comes if we see our kids suffering, and the doctor’s response is similar to what you got with your son.

    Thank goodness, we have one excellent specialist who admits he doesn’t know everything, but he assures us that he is continuing to search for answers and will not give up on our loved one’s difficult case! Too bad other doctors do not share his attitude and perseverance to educate themselves in areas where they have little knowledge or strength! And it is a shame that our daughter and family have to travel four hours away to see this doctor because our local big city specialists have not shown the same dedication.
    But, having said all this, we’re not giving up locally either, and we know there must be others like the Good Doctor –and we know you, too, will find one like that! We Warriors are tough and will not stop fighting to find answers to help not only us, but our families and other families! Wow! I’m sounding like a politician now, and I had better get off the podium and do some more work on this instead of just complaining! Good luck, Kelly, and we hope you have some good news on this soon!

    Reply
  • January 20, 2012 at 10:50 am
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    “But there’s one thing that makes ignorance unacceptable: arrogance. A doctor needs to know that he doesn’t know things, so he can continue to learn. Arrogance makes a doctor ineffective, unless he knows everything.”

    I agree. After several years of misdiagnosis by my family doctor I returned to her I think once or twice after my RA dx. She kept repeating, like a broken record, that RA simply goes away after two years. Of course as soon as I was dx I bought books & scoured the Internet for information on RA. And NOWHERE does it say that RA ever goes away, much less in two years! I didn’t bother correcting her. It was obvious to me that she thought I was dim & that my RA didn’t matter to her. It didn’t matter at all because if it did she would have learned (on her own) a little about the disease that she failed to dx for 3 years. She would have wanted to know how she could have missed all the signs & overlooked the blood test results. She would have wanted to make sure she didn’t make this same mistake again. At the very least she might want to know how to do her job in the future & how to treat a patient who has a dx of RA. A student wouldn’t go to school to take a test without studying, an uneducated & arrogant doctor shouldn’t treat patients.
    The simple fact that she was so arrogant as to not take the time to prepare for her job told me everything I ever needed to know about her. I never went there again. Looking back, I wish I would have corrected her. If not for me, for the next patient she fails to dx.

    Reply
    • January 20, 2012 at 5:22 pm
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      Ruby, so many stories like yours (and the ones in my own family)! We have to change this for our children’s sake.

      Reply
  • January 20, 2012 at 12:20 pm
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    So been there, sending hugs! Hope you guys get answers quick.

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  • January 20, 2012 at 4:30 pm
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    Kelly, I think it is important that you tell your regular Ped what happened, because it might be the case that he has failed other Parents and Patients like yourself.
    Quite often I myself have felt it impolite, or rude to interject and they make you feel so disheartened that all you want to is leave as soon as possible.
    But my bet is that your regular Ped will have no idea whatsoever that this kind of..ahem!..Dr?! has such a lousy..attitude.
    Very rarely do Doctors sit in on each others consults.. Hence they never realise how ‘good’ or ‘bad’ they might be?
    Of course right now, saying something is not a priority, but when the chance arises???
    I hope with all my heart that little bear will be ok.
    Thank you for that you do. We owe you much

    Reply
  • January 20, 2012 at 5:00 pm
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    Does your insurance require a referral to a rheumatologist? Then you could skip that level of care,and have more expert testing. Sometimes, it takes months or longer, of following of a patient, before the RA really shows its face,as you know. We would love for an rapid answer but sometimes, it takes a while before symptoms, labs, ultrasounds,MRIs, show the true picture. Mine was slow in developing, but the joint pain was real, even without much swelling or negative labs. I had other systemic signs, however. It can just be a complete muddle for awhile, and I dont blame my rheum for that, as he kept retesting and being supportive. Maybe Bear needs to just go right to a rheumatologist.

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    • January 20, 2012 at 5:39 pm
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      I’m not looking for a quick diagnosis at all. As I keep telling friends, it could go away or simmer for 25 years as mine did – and I lived a normal life most of the time. It did resolve and return so I wanted it looked at. I’ve been talking with friends (some doctors) about a cautious approach with aggressive tx as soon as it is apparent what we are dealing with. The reason I wrote this post is specifically to point out – as Ruby commented and patients tell me every day (and studies show) how great the general level of ignorance is about this disease. This guy showed how ignorant he was by his remarks, which could have been completely forgiveable if he had one humble bone in his own body. However, he was arrogant and rude, dismissive, etc. Not making eye contact, interrupting me, and telling me that I was wrong with everything I tried to add to the conversation.

      My laptop just lost the whole next paragraph. I think I’ll write it into a new post… When will I get to post the cute little post I planned for today? LOL.

      Reply
  • January 21, 2012 at 1:35 am
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    Looks like Bear might have (an RA) nodule on that knuckle, or a cyst of some kind.

    Reply
  • January 21, 2012 at 2:19 am
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    Kelly, not only are you one of the bravest people I know, but you are often my solace in the tough times that happen so regularly for us chicks and roosters. When my family or friends seem oblivious to what is happening to me and it tears at my heart I think this isn’t just me… another strong person (you) goes through this too. You repeatedly overcome it and reach out to help others. I think of your son and my own and want to do something to change the norm for the future. Please keep telling us how we can help… I emailed to pre register….

    Reply
  • January 21, 2012 at 3:01 pm
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    Kelly, I am sorry for the misunderstanding. I was not criticizing you. I wasn’t implying you were solely interested in getting a quick diagnosis, although as a parent ,I could understand wanting the cause of the swelling to be defined ASAP. Oh the other hand, a false positive diagnosis would be awful, especially given the meds that would be used for aggressive RA treatment.

    To clarify, what I was trying to point out is that sometimes, despite all of our currently available technology and testing, including nuclear scans, MRIs, xrays, labs, physical exam, RA in its early stages ,can be undetectable. Then , after a certain point where it is determined that a issue cant be diagnosed , to find a rheum a person is comfortable with ,and followup regularly with him/her. That way, with that continuity, that rheum can keep observing and checking, especially as they will be watching and palpating those joints to detect early changes, as well as periodically doing followup labs and scans,etc.. I myself had to go through such a process, and did have to switch from a rheum with a condescending attitude ,first , to get to my current one who has always believed me, no matter what the tests or labs did or didn’t say at that time.

    I also feel that we have to be careful in painting all rheums with the same brushstroke. I know that isnt the popular view when we hurt and we need relief and answers ..And there are CERTAINLY docs who are NOT good docs,either with the bad attitudes ( that you and lots of us have run into,) and/or exhibit clinical incompetence.

    On the other hand, I know many people who DO have good care, and I know that there are others who have NOT had good care. But to simply say that all or most of the rheums and docs are incompetent, or unresponsive to our needs , is not quite accurate either. At the heart of it, I simply want to encourage people to keep searching for that rheum who is a good fit, as they do exist. I know that sometimes, a person is limited by geography, financial issues,etc.on who they can see, though..
    .
    I am sure as an advocate, as you’ve said , you hear lots of people who have not found good care. . But on the other hand, those people with good rheum care , may not be as apt to write to you . either on the blog or facebook, of those positive experiences. Of course, I know you realize that there are good rheums, but I just wanted to point that out to others, so that they may not be as discouraged and actually be encouraged, that good rheums ARE out there and it can be worth it, to find a doc who is competent and caring. .. And no doc is perfect as they are human too… It takes a combination of listening, skill,knowledge , and empathy to treat RA effectively but there are good rheums out there.

    Thanks for listening ,Kelly.. Wishing you and Bear the very best…Keep us posted of how he is doing.

    Reply
    • January 22, 2012 at 11:33 am
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      My first rheum dr was a waste of time, I think I might have known more than he did. Made some bad decisions that I paid for, was very glad to see him go. I was going to ask for a new dr that day when he told me he was leaving. But…I have a really good compassionate rheum doc now and lucked out on my primary doc as well. I go to the VA so have to take what they give you to a degree. Primary doc – “Okay, with Fibro you really should be exercising but wait, you have RA, that makes it pretty impossible. I’m sorry.” Refreshing!!!

      Reply
  • January 8, 2015 at 5:28 am
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    Hello! I have been obsessively google searching my symptoms for months and months trying to find someone like me, I think I have RA but being 17 years old the doctors and adults I’ve spoken to aren’t interested. I have no idea what to do and the pain is crippling, I can’t use a can opener without being reduced to tears some days. It’s horrible and I just want to find a way to ease the pain, or just have a doctor listen to me would be even better. Do you have any advice? Are there special doctors I could see? I live in the Uk so I’m not sure if that makes a difference, but any help would be so greatly appreciated. Thank you!

    Reply

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