This post appears as part of my Life with Rheumatoid Arthritis series, which features stories about people’s unique experiences with rheumatoid arthritis. Read more about their travels Here.
Written by Ryan Millikan
That i love Rheumatologist. He is kind and knowledgeable. He is patient. He spends time with me, listens to me, and answers all my questions. He knows the drugs and their side effects, and is familiar with treatments in the clinical trial pipeline. Provides encouragement and stimulation for healthy habits such as meditation and clean eating. It even tolerates my inquiries about the latest food fads or topical oil a friend brought in from a hiking trip through the jungles of South America. He is my lawyer and my partner in business with Rheumatoid arthritis (Outside).
He was not the first rheumatologist.
It was the first rheumatologist I saw almost the exact opposite of my current doctor. For nearly an hour straight I spoke in medical language complete with acronyms, Latin prefixes, and words that I could never begin to spell or pronounce. It was all this after I started the conversation with a hello and greeting, “My goal is to keep you out of the wheelchair.” What or what ?! I was there because my hand was abnormally sore and swollen, and we were starting to talk about a wheelchair?
My husband was with me to take notes and ask questions, but sat 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. Levlunomide. Age condition permanent damage to internal organs and joints; Enbrel, Humira, Ourense; Side effects include vision loss, liver failure, bone marrow suppression and severe lung infections. We got scared and confused, and then asked to make a treatment decision. I had no idea what to do, and it was clear that this doctor was not going to help make the decision. She was full of knowledge but she lacked sympathy and the ability to help me connect with that knowledge. I knew she wasn’t the partner I needed on my RA trip.
I immediately started looking for a new rheumatologist.
Rheumatoid arthritis is a chronic condition that I will live with for the rest of my life, and I knew I needed a doctor to patiently guide me through the steps of its management. Luckily, I was able to find this person through family and friends. I am grateful that I realized that my first rheumatologist was not the one for me, and I am even more grateful that I now have a rheumatologist working with me to manage my condition.
If you are looking for a rheumatologist, here are my tips for getting a good one:
1. Trust your intuition. It is difficult to hear your inner voice against a medical professional. He was the first doctor I saw who knew more about rheumatoid arthritis than I did, and I knew I needed a specialist, so at first, I fought the idea of finding a new rheumatologist. After two more visits, I knew that I had to listen to my instincts and find someone new. I encourage you to believe in yourself that you know what’s best for you!
2. Bring a friend. Invite your spouse, best friend, or trusted colleague to come to an appointment with the doctor to evaluate and interact with the doctor. The early stages of rheumatoid arthritis are frightening and confusing because you are agonizing and overwhelmed by the severity of the disease. So it pays to have a trusted source to influence it and help you determine whether or not your doctor is a good fit. They can give advice with a clear head and also keep you in check if needed.
3. Ask for help. Rheumatologist is difficult to find, so I have asked friends and family for help. I surveyed my primary care doctor, my pharma friends who called rheumatologists, and my medical friends. I also asked my close friends and family to ask their doctors who they would recommend. I compiled a list, searched for doctors, and picked one that I thought would be compatible. People want to help you, so seek their help in finding a rheumatologist.
Rain Millikan lives in Raleigh, North Carolina with her husband, son, and dog, Weezy. She has been learning to balance her professional and personal life with rheumatoid arthritis for the past five years. Through a combination of medications and lifestyle changes, she can maintain an active life with minimal disruption. Ryn’s passion includes travel, cheerleading for the Paladins and Tarheels, and everything related to politics.