What to Do When it's Hard to Find a Rheumatologist

by Lene Andersen, MSW Patient Advocate

When you have a type of autoimmune arthritis, such as rheumatoid arthritis (RA), it’s important to be treated by a rheumatologist. They are specialists in diagnosing and treating musculoskeletal diseases, such as the different types of arthritis. Usually, your family doctor will be able to refer you to a specialist. But what if you have a hard time finding a rheumatologist?

Looking for a rheumatologist

The American College of Rheumatology’s (ACR) website has a search function to find a rheumatologist. Enter your city and state, as well as the distance you’d prefer to travel. You can look up an area that’s anywhere from 5 to 100 miles of a particular zipcode.

Joe Coe, Patient Advocate with CreakyJoints, also recommends phoning your insurance company to inquire about rheumatologists who participate in their plan. "Nurses are a really good resource and they’re often overlooked,” Joe said. He mentioned checking with “organizations like the Rheumatology Nurses Society, which helps train and educate nurses in rheumatology to be on the cutting edge of their practice.”

Another good resource to find a rheumatologist is people in the arthritis community. Are you part of a support group for people with RA, either online or in your community? Joe recommends using “online patient support and education communities like CreakyJoints, to post in the message boards.” Ask around for recommendations. If you’re not part of a dedicated support group, try asking on websites, such as here on HealthCentral, or ask on Twitter, using the hashtags #RA, #rheum or #arthritis.

If you hear of someone with a good reputation among people who live with RA, you can research them further in two ways. First, you can verify their credentials in the American Medical Association’s DoctorFinder tool. Second, you can look up the doctor’s reviews on RateMDs.com. Be aware, though, that people who are dissatisfied may write more reviews than people who are happy. Take the reviews with a grain of salt. You should also be aware that some doctors insist their patients not review them.

What if you can’t find a rheumatologist in your area?

Maybe you live in a rural area, or maybe the few rheumatologists fairly close to you are not taking any patients. “There is such a large demand for rheumatologists and they tend to be focused in urban or suburban areas. Rural areas definitely have a lack of resources and connections for patients who are a little more remote,” Joe mentioned, "We recommend doing the same thing we recommend anyone to do – call their insurance company or the hospital nearest to you, and use the ACR directory.“

Using your creativity can be a necessary part of this process and for many people that means traveling hours to see their rheumatologist. Others actually go to a different state to see their doctor. This could be because they couldn’t find someone close to them. Another reason could be that they found someone with excellent credentials and reputation and decided this was worth the inconvenience of traveling far for appointments. If you would like to try this option, be aware that such doctors may have a waiting list and it can take some time before you see them.

If that sounds daunting to you, keep in mind that you will likely see your rheumatologist only every three months, maybe every six months if your RA is well controlled. As well, your appointments are usually pre-scheduled. This could give you more flexibility than when you’re looking for a family doctor, who you’d like to be able to see quickly in case of a sudden illness.

Building partnerships

If you find a rheumatologist who is very far away, it’s a good idea to build two types of partnerships with them.

First, you and your doctor need to work well together and not just when you’re in their office. It’s important that you can reach your rheumatologist by phone or email, especially when you live far away. When you can`t just pop in for an appointment in case you’re flaring, the two of you need to have alternate ways of keeping in touch and discussing what’s happening with your RA.

The second partnership is between your rheumatologist and your family doctor. If your specialist is hours away, a creative solution for issues that come up between appointments could be for you to be seen by your family doctor, who can connect with your rheumatologist to discuss how to deal with an urgent issue.

Having a hard time finding a rheumatologist can be discouraging.Don’t give up. With the help of your family doctor and people who also live with RA, you’ll be able to find someone who can oversee your RA treatment.

Lene  Andersen, MSW
Meet Our Writer
Lene Andersen, MSW

Lene Andersen is an author, health and disability advocate, and photographer living in Toronto. Lene (pronounced Lena) has lived with rheumatoid arthritis since she was four years old and uses her experience to help others with chronic illness. She has written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Lene serves on HealthCentral's Health Advocates Advisory Board, and is a Social Ambassador for the RAHealthCentral on Facebook page, facebook.com/rahealthcentral. She is also one of HealthCentral's Live Bold, Live Now heroes — watch her incredible journey of living with RA.