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.
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.
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.