Response to a Blog Written by a Rheumatoid Arthritis Doctor

Please read the first part of this blog: Rheumatoid Arthritis Doctors. That post discusses a story written by a young doctor who describes part of his training. If you read that post and others on the site, you know this is not an attack on good Rheumatoid Arthritis doctors. Those are the ones, like Doctor Conley, that we need more of.

Dear Rheumatoid Arthritis Doctor or Scott Conley,    

Recently, a reader of my blog sent to me your article entitled Deep Waters. I read it through tears and decided to share it with several friends and ask whether they had the same reaction. They did.

Eventually, I wrote a blog introducing your article and recommending it to my readers. You can find my article at this link.  Your article raises several important points. I’d like to respond to a few that are particularly important to me, so I’m posting post this open letter to you on my website.

If I could, here’s some of the many questions I’d ask you about Rheumatoid Arthritis doctors…

Since you wrote this during the first year of practice, I wonder how the last several years of working with patients have affected your ideals. Have you been able to care for patients the way that you described in the article?

Do you think that rheumatology specialists are liable to rely more upon tests they consider objective such as radiographs and blood tests and less upon patients’ descriptions of symptoms due to the invisible nature of most Rheumatoid Arthritis symptoms?

Do you think it would be best if a patient who is interested in her own test results had access to that information directly so that valuable clinic time would not be wasted with patients trying to pry that information out of doctors?

You described the patient in your story using words such as “furiously” and “obsessive.” Could your perception of her have been affected by the words and attitude of the man who you trusted as your guide?

Are rheumatologists trained to minimize medical situations with Rheumatoid Arthritis patients in an attempt to prevent patients from becoming anxious or behaving like the patient in your article? Could it be a tactic doctors use to extinguish the behavior?

Patients ask me if there has ever been a rheumatologist who was diagnosed with Rheumatoid Arthritis severe enough to render him unable to practice as a doctor anymore.  It seems like that may be a missing link that could perhaps help rheumatologists to be able to acknowledge the severity of Rheumatoid Arthritis pain. Have you ever heard of such a case?

Some of the many things I’d tell you about Rheumatoid Arthritis doctors, if I could…

  • I’ve not been asked by a doctor what it is like to live with Rheumatoid Arthritis. No doctor has asked me about the pain or limitations that are caused by RA. Their actions and words make me think that they do not precisely know. It would not be difficult to learn about the patient experience. Patients would tell if they were asked. And there are dozens people with RA who are writing blogs that are full of information to be culled. I believe it’s an important way to get their feet “wet,” as you say.
  • There seems to be a doctor’s attitude that’s akin to “piety,” a word used by you. Doctors I’ve met use this manner unless they initiate a conversation in a social setting.  If this is as common a problem as patients tell me, then I believe it’s creating an obstacle to doctors acquiring information necessary for medical care. Because doctors give obvious cues that that they are tired of listening or that what I’m telling is not believed, I routinely leave doctors’ appointments without having discussed something that I believe is important. Summing up four to six months of Rheumatoid Arthritis symptoms in 15 minutes is difficult enough without this additional obstruction.
  • Since your article concerns a patient’s own version of her medical records, I’d like to mention something about this. Last year, for the first time, I obtained some my own records in order to bring them to a new Rheumatoid Arthritis doctor. I was surprised to find numerous factual errors. After inquiring of other patients, I found that my experience was common. So I wrote a blog about checking out the doctor’s notes.  Since that time, I’ve heard the same story from dozens of patients. The comments on that post show doctors’ versions of the patients’ Rheumatoid Arthritis can be fraught with errors from humorous to serious. At this point, I advise every patient to obtain copies of all medical records and be sure that records are correct, which is their purpose.

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/

6 thoughts on “Response to a Blog Written by a Rheumatoid Arthritis Doctor

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  • July 9, 2010 at 9:36 am
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    Thank you! Thanks for your blog, for your insight, for your efforts in bridging the communication gap between patient & doctor. This is the FIRST place that I’d actually found a kindred spirit – someone who was going through the same things as me and “looked” healthy. You’ve made me realize that the dr. may NOT be wrong with the diagnosis I’ve received. Sending this w/much love & gratitude!

    Reply
    • July 9, 2010 at 10:53 am
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      Thanks, Sonya. I’m sorry we have the same problems, but I’m glad we can have that “kindred spirit.” Good luck to you. :rainbow:

      Reply
  • July 10, 2010 at 5:54 am
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    Thanks so much for sharing this.

    Healthcare professionals may be experts in disease states, but empowered patients are experts in living with that disease – and may well have read widely and deeply across the literature too.

    Their relationship should be a fully participatory, democratic partnership. Anything short of this is not fit for purpose.

    It is the ideal, but it must also become the reality.

    Reply
    • July 10, 2010 at 10:17 am
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      Andrew,
      Thank you. Somehow hearing you say it increases to my determination.

      I didn’t set out to become “empowered,” but to be treated. However, it was not as simple as it should have been. Now, I’m determined to help others be treated properly as well.

      Reply
  • October 27, 2013 at 5:05 pm
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    Kelly, did you ever get a response from this Dr? I hope so for I would love to hear his answers!

    Reply

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