This post appears as part of the My Life With RA series, which features stories about the unique experiences of people with rheumatoid arthritis. Read more about her travels 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 of my questions. He knows the drugs and their side effects and is aware of the treatments in the clinical trial pipeline. It encourages and motivates healthy habits like meditation and clean eating. He even tolerates my inquiries about the latest fashions or the latest oil a friend brought back from a hike through the jungles of South America. He is my attorney and partner in dealing with rheumatoid arthritis (RA).
He wasn’t my first rheumatologist.
The first rheumatologist I saw was almost the exact opposite of my current doctor. She spoke medical terminology for nearly an hour, using acronyms, Latin prefixes, and words I couldn’t spell or pronounce. All of this happened after she started the conversation with a flat hello and the welcoming phrase, “My goal is to get you out of the wheelchair.” What ?! I was there because my hands were sore and unusually swollen and we started talking about a wheelchair?
My husband was with me to take notes and ask questions, but sat dazed and unable to keep up with the lightning-fast review of blood tests, lab tests, and treatment options. We drowned in the words: disease-modifying anti-inflammatory drugs; Methotrexate; Leflunomide; Lifetime condition; permanent internal organ and joint damage; Enbrel, Humira, Orencia; and side effects such as 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 would be of no 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 wasn’t the partner I needed on 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 I needed a doctor to patiently walk me through the steps to treatment. Fortunately, I was able to find this person through family and friends. I’m grateful that I realized that the first rheumatologist wasn’t right for me, and even more grateful that I now have a rheumatologist to work with me to treat my condition.
If you’re looking for a rheumatologist, here are my tips for landing on a good one:
1. Trust your gut. It’s hard to listen to your inner voice against a medical professional. The first doctor I saw knew a lot more about RA than I did, and I knew I needed a specialist, so I first fought the idea of finding a new rheumatologist. After a few more visits, I knew I had to listen to my instincts and find someone new. I encourage you to believe in yourself that you know what is best for you!
2. Bring a buddy. Ask your spouse, best friend, or trusted coworker to schedule a doctor’s appointment with you to evaluate 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 severity of the disease. So it is helpful to have a trusted source to weigh up and decide whether your doctor is a good fit for you. They can advise with a clear head and keep you in check if necessary.
3. Ask for help. Finding a rheumatologist is difficult, so I enlisted the help of friends and family. I interviewed my family doctor, my friends in the pharmaceutical industry who see 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 made a list, researched the doctors, and picked one that I thought would be compatible. People want to help you so ask for help finding a rheumatologist.
Ryn Millican lives in Raleigh, NC with her husband, son, and dog Weezie. For five years she has been learning to reconcile her professional and personal life with rheumatoid arthritis. With a combination of medication and lifestyle changes, she is able to maintain an active life with minimal disruption. Ryn’s passions include traveling, cheering on her paladins and tarheels, and anything to do with politics.
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