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Is There Anybody Out There?: The Trials and Travails of Finding a Good Rheumatologist

My first experience with a rheumatologist was quite unpleasant. I was on a quest to discover why my joints were so painful and swollen, and was hoping to find some relief for whatever it was that was causing my symptoms. Rheumatology was completely new to me, and in my rush to find out what was happening to my body I didn’t do any research when it came to finding a specialist. Rather, my general practitioner referred me to an orthopedic surgeon who in turn referred me to the only rheumatologist practicing where I lived. On my initial visit, I was dismayed by his bedside manner, and this first impression never improved. From the time he doled out my diagnosis until my last visit with him, this doctor seemed to have no empathy for what I was going through. A new and frightening reality was crashing down on me, and it felt as if this was a trifle barely worth his time. I often felt that because I wasn’t in need of surgery that my pain and swelling didn’t seem to matter to him. After three years of dreading doctor appointments, I decided it was high time to find another rheumatologist.

Asking for recommendations from family, friends, and other doctors

This go-round I researched rheumatologists in my area, and heard about a doctor who came highly recommended, although I was warned about the long wait times in her office. I decided that although her office was 55 miles away, the drive would be worth it if she turned out to be more compassionate. When I called to make an appointment, I was informed that the wait for new patients was running five months. So I booked my appointment for nearly half a year away, hoping it would lead to a better medical experience.

Once I met her, I instantly knew this doctor would be a far better fit for me than my previous rheumatologist. She had the perfect mix of head and heart, being up to date on the latest research and treatments and always expressing concern for my symptoms. However, her office staff left much to be desired. It was nearly impossible to get a human to answer the phone, and voicemails almost always went unreturned. I frequently spent at least a half hour calling repeatedly until I finally heard a live voice on the other line. The wait time for office visits was even worse. It routinely took one to two hours before I was taken to an exam room. The waiting room was always so packed that on several occasions a spontaneous support group popped up, with patients asking one another about their treatments and how they were faring in order to pass the time. Once in an exam room, there was typically an additional hour-long wait. After my appointment, I had yet another 15 to 30-minute wait for the lab technician to draw my blood sample. When factoring in my driving time, I generally had to spend six to eight hours going to the doctor. I had to make the trip at least four times a year, which, combined with the Herculean efforts required to reschedule appointments, get test results or request refills, became so arduous that I decided I needed to change doctors yet again. I loved my rheumatologist so much that I put up with the associated headaches of seeing her for 10 years before making the switch.

About a year ago I started seeing a rheumatologist who began practicing in my city a year earlier. Multiple people recommended him, and now that I am a working mom with two kids I was eager to try someone closer. So far I’ve been incredibly impressed with his office staff, and I have a favorable opinion of his knowledge base. Yet, there have been times when I’ve been disappointed in his responsiveness to my symptoms, as he seems reluctant to prescribe the palliative medications that I need from time to time to get through a flare. I don’t regret switching doctors, but I’m left wishing that I could concoct my own “perfect rheumatologist,” pulling a few traits from this one and a few strengths from that one to mix up the ideal practitioner.

A dearth of rheumatologists to treat RA

Sometimes when I express my frustrations with the medical world, friends and relatives will suggest that I find a new doctor. What they fail to understand is, there just aren’t enough rheumatologists to meet the need. I’m actually fortunate to have the option of visiting a specialist in my own city, with several additional options within a 70-mile radius. Some RA patients have to travel 200 miles to reach the nearest rheumatologist. Furthermore, it is typical that RA specialists have a waiting period of several months for new-patient appointments. Therefore, we can’t be as choosy as we would like.

Rheumatoid arthritis is a tough disease. It affects patients differently, and treatment options that seem like miracle drugs for one person may have virtually no impact for another. Therefore, good medical care is a crucial component of living well in spite of the disease. Ideally, one’s doctor and medical staff should feel like teammates in the fight against RA. Yet, the shortage of rheumatologists often leaves RA patients choosing from a limited selection of practitioners, sometimes never finding the level of care needed to truly feel supported in this fight against arthritis.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. http://www.eurekalert.org/pub_releases/2013-11/w-sor112513.php

Comments

  • Cynthia Ventura moderator
    4 weeks ago

    @tamara Tamara, I know you authored this four years ago but the struggle to find the, “perfect” rheumy is for many ongoing.

    I endured a cold, zero empathetic, non-committal rheumy for over three years because like you I knew no one else to see and she was the only rheumy in my area. I eventually couldn’t stand it anymore and threw in the towel with her in surrender. Luckily, one of my college professors also had RA and recommended I see her rheumy. It was the most fortuitous thing that ever happened for me.

    I live on the border between two states and travel to the adjoining state to see him every 6-8 weeks. My rhuemy is the most compassionate, empathetic and committed doctor I know. He is highly skilled, a teacher and mentor and desperately swamped with patients, unfortunately, to the point that he cannot take on new patients. He has a great bedside manner and always available to his patients. His staff is as kind and caring as he is. Waiting times almost never extend beyond 15 minutes and he gives you as much time with him as you need never losing his patience.

    My advice is never give up looking for your perfect rheumy. He/she is out there. Talk to people, talk with your dr and their staff. Nurses are excellent resources. Seek out recommendations and if your current rheumy isn’t working out don’t be afraid to find one who does.

    If anyone reading this lives in the central NJ/Philadelphia, PA area I’m more than happy to recommend his group. Talking to other patients in the waiting room the other rheumys in the practice are very well liked too.

  • Tamara Haag moderator author
    4 weeks ago

    Hey CynthiaV,

    Thank you for sharing your experience in putting up with a doctor who wasn’t a good fit for you and then what you found in your new doctor. RA/RD is scary already, and the thought of leaving a rheumatologist and starting over with another when you don’t know if the new one will be better can be very daunting. Thanks for sharing this reminder that keeping hope alive can pay off. We deserve it!

    Appreciatively,
    Tamara

  • ghlu8v
    8 months ago

    I travel 50 some odd miles one way to see my rheumy every 3-4 months. There are plenty around my city but he is who I started with and I love him! His staff not so much. Basically the MA is terrible but I work around her lol.
    The reason I don’t change dr is because I have been with him for 11 years, since dx of RA fibro etc etc. I don’t want to change because we have finally found a protocol that is working and if I change drs they will want to start with their protocols and I’m not sure I would make it through that!

  • Tamara Haag moderator author
    8 months ago

    Thank you for sharing your experience and perspective! I certainly understand being willing to make the drive if your treatment is working. Luckily, when I changed rheumatologists my new doctor said he has a “let’s not reinvent the wheel” perspective and went through with me all the things I’d tried with my previous doctor and what worked and what didn’t. However, not all doctors will take that approach, as you’re right that some doctors have their preferred protocols and always want to try that. We go through a lot with this disease, and sometimes a 100-mile drive to get to the doctor and back is the least of it.

    I’m so glad you’ve found effective treatment. Please continue to share any time you feel so inclined!

    Wishing you all the best,
    Tamara

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