Rheumatoid Arthritis Doctors | Rheumatoid Arthritis Warrior

Rheumatoid Arthritis Doctors

What’s wrong with Rheumatoid Arthritis doctors?

Yes, I do know there are a lot of great doctors. There’s “my good GP” as I always say. We have a fantastic nurse practitioner pediatrician. And a few others we know.  You better believe I was thrilled to find my good Rheumatoid Arthritis doctor finally.

Are Rheumatoid Arthritis doctors different? It seems like they‘ve been trained to listen in a different way. Maybe it’s the invisible nature of the disease?

A blog from a Rheumatoid Arthritis doctor

I’d like you to read what one Rheumatoid Arthritis doctor has to say about part of his internship.**  He shows us the way that a philosophy of medicine can be passed down through the process of internship.  When a reader sent me this recently, I cried.

An excerpt: “‘Let me warn you before we go into the next room,’ the physician whispered, ‘this woman is crazy!’

I stood in the hallway of the rheumatology clinic with a well-respected physician and was intrigued by his comment. As a third-year medical student, I was excited to have the opportunity to spend one-on-one time with this specialist. We were about to see a patient with severe rheumatoid arthritis. She was the last patient of the day, and I had already learned much from this physician…” (Click here to read more.)

There have been several moments like that over the last year – moments where I think I’m beginning to understand some things about this RA puzzle that I really don’t like. The day I began to learn about Rheumatoid Arthritis doctors’ and researchers’ perceptions about our pain threshold was a hard day. Then there was that article from the 1960’s that called us a burden on society and said Rheumatoid Arthritis doctors blamed our personality in part for our disease. The Arthritis Foundation’s presentation of Rheumatoid Arthritis and hypochondriasis was not much better.

I’ll confess that on each of those occasions, I cried. I cried because it began to dawn on me what is behind the RA mantra “No one gets it.” I cried because no one but other rheumatoid patients do get it and I can’t see how or why anyone would look for a cure for something that’s our own fault or just overblown.  I cried because it seems impossible for researchers to find a cure for something that they don’t understand. Mostly, I cried for all of the patients all over the world who feel misunderstood because their symptoms are invisible or who feel like they are the only one.

A good Rheumatoid Arthritis doctor

Of course there are good doctors like the one who wrote the article I’m linking to here. And what about the Rheumatoid Arthritis doctors who do the good research on patient-reported outcome measures? We can have more hope because of Dr. Basch who is trying to get the medical profession to recognize the value of patient accounts of symptoms and side effects. There is a long list of good doctors doing good work. I hope they are able to pass down what they learn the same way the jerk Rheumatoid Arthritis doctor in the story tried to pass down his poisonous philosophy.

**If you have any problem with that website, type “AAFP Resident and Student Voice Deep Waters” in your browser search bar & click on the top result. Click skip ad. Then their page opens.

Don’t miss my letter of reply to Dr. Conley: Response to a Blog Written by a Rheumatoid Arthritis Doctor.

Recommended reading:

Kelly O'Neill

Kelly O'Neill (formerly Kelly Young) has worked about 12 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 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 fourteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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17 thoughts on “Rheumatoid Arthritis Doctors

  • July 8, 2010 at 11:54 am

    Great thoughts. I am blessed to have a WONDERFUL rheumtologist and some patients who have moved across the country literally fly back a few times a year to see her. I have often wondered what it is that calls doctors into this specialty however.

    [1] It’s all about treating the patient, not curing the patient of looking for a cure.

    [2] When a patient is helped by a medication, it’s usually just a matter of time before that medication no longer works as well, or new ones come out the patient wants to try;

    [3] when the patient is helped, the rheumatologist doesn’t hardly get to be involved. It’s often through surgery (by a surgeon), an OT or other therapist.

    My rheumatologist gives me gentle hugs before leaving the exam room. She wants to know what is going on in my life and how she can help make LIFE better. And she really does hate to see me suffer. It must be hard to be a doctor who really does care and know your job is to just watch people deteriorate while trying to offer whatever medicines are available at the time.

    • July 8, 2010 at 2:49 pm

      Good points, Lisa. Glad you have such a great rheum doc. When I hear about those kind of rheum docs, I always hope that they will mentor or go into teaching to help pass down their skills.

  • July 9, 2010 at 12:24 pm

    I went looking for the article thinking I was going to find another doctor who was arrogant and had a God complex. And yes, I had tears in my eyes and was relieved to read that he cares more about his patients than most. And yes, the reason for the patient keeping a notebook was taking back control…I believe it was because we have to. Not because we feel a loss and this helps us feel better. I’ve been to so many docotrs over the years I’ve lost count. You get maybe 10-15 minutes with a doctor and most of that could be catch up from what has happened. Once I started pulling records and looking at doctor’s notes, I realized that they didn’t write down MOST of what we discussed. I’ve been dismissed too many times and didn’t get an RA diagnosis until November and have had this pain for over 20 years. I’ve had doctors dismiss symptoms as normal activity of being a wife and mother. I didn’t ask for this pain, nor do I want it. I want it to stop. So why would I unconsciously make it up? I don’t want to take meds I can’t afford or want the side effects they bring on that are almost as bad as the damn RA itself. I WANT to get up in the morning without suppressing moans that scare my children because I’m so stiff and hurt so damn bad that I get nauseated. I WANT to go outside and swing with my kids but can’t because my hands can’t grip the chains. There are quite a few examples that I can include…but the main one is that I DON’T want to have to go see a doctor every 6 weeks if he thinks I’m crazy or a hypochondriac. My money could be so much better spent, especially since we have to survive on one paycheck because I can’t walk or stand or use my hands on most days to hold a job. But yet I’m too healthy to get disability because my doctor downgrades my symptoms and disease activity. So why in the hell am I still hurting and having to take medicines that are making me feel even worse.

    I’m sorry to rant. But doctors are on my poo-poo list right now and I’ve been having a rough time of it if you couldn’t tell. But southern girls are raised on grits and guilt, so I’ll apologize and suck it up as usual and tell everyone I’m ok as I grit my teeth and grin. Maybe I am a little :silly: crazy.

    • July 9, 2010 at 12:37 pm

      Chelle!!! That was such a great rant I read it aloud to my kids. It would make a great Tshirt but it won’t fit. 😉

  • July 9, 2010 at 12:38 pm

    I cannot get that article to load.

  • July 10, 2010 at 1:07 am

    Finally got it loaded by cut-paste into a new window. How nice that some doctor finally kinda “got it”! Too bad most don’t.

  • July 13, 2010 at 11:07 pm

    Kelly, as you mentioned, it would be extremely interesting to see if/how Dr. Conley’s perspective has transitioned in the nearly 10 years since he wrote this article.

    My experiences have left me somewhat skeptical. Too often, doctors seem to have lost their grip on those lofty principles of patient care from their third year of residency. After a few years in practice, the practice of medicine becomes more business than calling. We all are human, and we all can fall victim to cynicism, but the danger of irrevocable harm is so much greater when it is a physician who becomes jaded.

    In my opinion, the issue is respect. If I am living with a chronic incurable illness it’s in my best interests to have a mutually respectful relationship with my doctor. He or she must respect my intelligence; respect my opinion; respect my wishes regarding treatment. I in turn must respect my doctor’s professionalism, judgement, commitment.

    No wonder this ideal relationship with our doctors is so hard to achieve…

    • July 14, 2010 at 12:49 am

      I agree completely. Do you think most patients are respectful to doctors? When I think of it, I probably have been too much so. When I know they are wrong, I sometimes haven’t bothered saying so. But, I don’t think doctors treat patients the same way. Maybe it’s the arrogance that comes with title, or the weariness of the business that you mention, but I’ve never had a doctor treat me as an equal unless it was a social situation & the doctor initiated the conversation. Whatever it is, it seems inherent in the profession. It seems that we patients are all looking for a doctor who acts the way you mention, but that is more the exception than the rule.

      • July 15, 2010 at 4:44 pm

        Honestly Kelly, I think for the most part, the personality type to whom being a physician appeals is extremely bright, studious, introverted, and prone to arrogance because they don’t have strong social skills to begin with. Think about it – the sciences as a career typically don’t appeal to “people persons”, do they? So I believe bedside manner, good communications skills, empathy and warmth are likely to be acquired rather than natural for many folks who become doctors – their natural talents just happen to usually lie elsewhere. Of course this generalization doesn’t apply to every doc in the world, but I can’t imagine too many doctors who give it all up to become salesmen, can you?

        You are so right about treating a doc with respect and not always getting it back. I was actually recently told by an ortho, “Stop talking. Point to where it hurts.” I asked him if he had a learning disability and couldn’t understand verbal communication, because if not, I didn’t appreciate being spoken to like a toddler. He apologized, but nonetheless the visit from that point forward was not a good use of my time and I ultimately had to see another ortho.

        Right or wrong, the responsibility for initiating effective communication normally is on the patient. Seems to me I spend alot of time adapting my communications style to the doctor I’m seeing (with varying success), trying to read whether he/she will be annoyed if I mention reading something on the internet, asking for affirmation that he/she has heard and registered my complaint, etc.

        Definitely frustrating; definitely unacceptable; definitely simply the way it is…how do we change it?

        • July 15, 2010 at 5:02 pm

          That’s the trillion dollar question. Patient voice needs to be heard. I have some ideas. Hoping to find more like-minded people & push this thing forward as far as possible.

  • July 14, 2010 at 1:56 am

    The article “Deep Waters” made me cry too. My goodness, that student physician really summed it up so well. It shows that a fresh mind can see different things and how jaded physicians can get with their patients. I will be referring this article to many people as it is just fabulous. Thanks for sharing 🙂

    • July 14, 2010 at 2:08 am

      Thank you, Naomi. Deep Waters was written several years ago. I’m trying to contact the not-so-young-doctor now to see how he views things. Did you see my letter to him here at this link?

  • April 25, 2011 at 5:20 am

    I cried too. I’ve had RA for nearly a decade now (may 22 is my trigger event anniversary).

    My GP and specialist know I like to know what is going on, and that I genuinely understand- I did immunology at University for one. But most people roll their eyes when I try to keep records of what is going on. It’s just sensible! especially when she had a doctor (as that patient certainly had) who doesn’t give enough information about *her own body*. That’s what makes me so mad. It was her body that they were discussing. Her’s.

  • February 23, 2012 at 8:50 pm

    I am so glad to read all these posts.
    I thought I was the only one..lol
    My doctor may be a brain, but when it comes to bed side manner there is none at all. He actually blurted out one time ” if you are not going to listen to me, I will not treat you!”.. are you kidding me?
    At one point I did not go back to him and just tried ignoring the whole problem. By the way this does not work..lol
    I am starting to search for a new doctor…and have to admit I am lost. In the mean time I am going back tuesday, probably to get scolded again.

  • September 23, 2012 at 11:05 am

    i don’t look to my doc for empathy etc. the nurses who give the infusions, take blood, give you the heated blankets – they are all worth their weight in gold. i get my hugs from them! the doctor visit is all business – discuss the pros and cons of the elixer of meds hopefully working to slow down erosion and inflammation. my last visit i finally convinced her to prescribe pain meds. they don’t really address that so much – figuring that if the inflammation is under control with the the elixer, so will be the pain. unfortunately i am in transition every 6 months adjusting dosages and prescriptions and the pain is often out of control. ice bags throughout sleepless nights don’t cut it. i want pain meds on hand. i have to admit i got emotional about it and used a couple of profanities but i got my way! no sympathy or hugs from her but she understood and thankfully wrote out the script!

  • December 5, 2012 at 10:33 am

    Part of me is glad he reveals what he thinks because it shows how far we have to go. Unspoken attitudes are more difficult to address, even if common. I too am dismayed by the writer’s attitude and tone. It’s also unethical to bill patients (and thereby often insurance or taxpayers as well as the patient) more because you don’t like them. That’s the doctor’s personal issue to deal with. It’s sad when doctors are so burned out that the extra time some patients require cause them to lose patience and compassion.

    It’s up to the doctor to listen empathetically but to redirect if time is running short and to set a couple of concrete goals that are most important to the patient before the end of the appointment, whether that’s evaluation of new symptoms, pain control, investigation of DMARDs, etc. It sounds to me like one of the patient’s primary goals for the appointment was finding an empathetic rheumatologist, and that’s important for a first appointment. That the patient joked and that the doctor did not get the joke, even if they don’t share the same sense of humor, indicates a fundamental lack of connection.

    For those doctors want to practice more compassion, it seems like it should come more easily. Connect with us and for those who do, stop objectifying us. Let go of the disdain you show as we describe our symptoms or pain and try to attribute the causes for them. We’re all the same–we’re people first, both doctors and patients. Degrees and status don’t make one person better than another, than the patient or the person who bags your groceries or mows your lawn. Of course, a certain percent of people will never have compassion; they don’t want to have it. We probably have to write them off.


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