This post appears as part of the series My Life With RA, featuring stories of people’s unique experiences of rheumatoid arthritis. Read more about their journeys here.
By Ryn Millican
I love my rheumatologist. He is kind and knowledgeable. And he’s patient. He spends time with me, listens to me, and answers all my questions. He knows the medications and their side effects, and he’s up-to-date on the treatments in the clinical trial pipeline. He provides encouragement and motivation for healthy habits like meditation and clean eating. He even tolerates my inquiries about the latest food fads or the topical oil a friend brought back from a hiking trip through the jungles of South America. He is my advocate and partner in dealing with rheumatoid arthritis (RA).
He was not my first rheumatologist.
The first rheumatologist I saw was almost the complete opposite of my current doctor. She talked for almost an hour straight in complete medical jargon with acronyms, Latin prefixes, and words I could not begin to spell or pronounce. All of this was after she started the conversation with a flat hello and the welcoming phrase, “My goal is to keep you out of a wheelchair.” What?! I was there because my hands hurt and were abnormally swollen, and we were starting off by talking about a wheelchair?
My husband was with me to take notes and ask questions, but he sat there with a dazed look, unable to keep up with the lightning speed review of blood panels, lab tests, and treatment options. We were drowning in the words: disease-modifying antirheumatic drugs; methotrexate; leflunomide; lifetime condition; permanent internal organ and joint damage; Enbrel, Humira, Orencia; and side effects including vision loss, liver failure, bone marrow suppression, and severe lung infections. We were scared and confused, and then I was asked to make a treatment decision. I had no idea what to do, and it was clear that this doctor was not going to be a help in making the decision. She was full of knowledge but lacked compassion and the ability to help me connect with that knowledge. I knew she was not the partner I needed in my RA journey.
I immediately started looking for a new rheumatologist.
RA is a chronic condition that I will live with for the rest of my life, and I knew that I needed a doctor who would patiently walk me through the steps for managing it. Thankfully, through family and friends, I was able to find that person. I am grateful I recognized that the first rheumatologist was not the right one for me, and even more grateful that I now have a rheumatologist who works with me to manage my condition.
If you’re looking for a rheumatologist, here are my tips for landing on a good one:
1. Trust your gut. It is hard to listen to your inner voice against a medical professional. The first doctor I saw knew way more about RA than I did, and I knew I needed a specialist, so at first, I fought the idea of finding a new rheumatologist. After a couple more visits, I knew I had to listen my instincts and find someone new. I encourage you to have faith in yourself that you know what is best for you!
2. Bring a buddy. Invite your spouse, best friend, or trusted colleague to come to a doctor’s appointment with you to assess the doctor and your interaction with them. The early stages of RA are scary and confusing because you are in pain and overwhelmed by the seriousness of the disease. So it helps to have a trusted source to weigh in and help you decide if your doctor is a good fit. They can offer advice with a clear head and also keep you in check if needed.
3. Ask for help. It is hard to find a rheumatologist, so I enlisted the help of friends and family. I surveyed my primary care doctor, my friends in the pharmaceutical industry who call on rheumatologists, and my friends in the medical field. I also asked my close friends and family to ask their doctors who they would recommend. I compiled a list, researched the doctors, and chose one that I thought would be compatible. People want to help you, so ask for their help in finding a rheumatologist.
Ryn Millican lives in Raleigh, NC, with her husband, son, and dog, Weezie. She’s been learning to balance her professional and personal lives with rheumatoid arthritis for the past five years. With a combination of medication and lifestyle changes, she is able to maintain an active life with minimal disruptions. Ryn’s passions include traveling, cheering on her Paladins and Tarheels, and all things politics.