Being Your Own Advocate with Rheumatoid Arthritis
Practical steps to advocate for yourself, questions to ask your rheumatologist, and how to build the right care team.
Rheumatoid arthritis is a chronic autoimmune disease that can cause joint pain, inflammation, and, untreated, joint destruction and disability. Finding the right doctor and being a strong self-advocate are both crucial. The physician-patient relationship is built on trust and open communication, just like any close relationship. I always encourage my patients to take an active role in their care to work toward remission and better daily function.
As a patient, you can do a lot. Keep a symptom journal. Bring an updated medication list to every visit. Bring outside lab and imaging results with you. Write your questions down beforehand. Bring a family member or friend for support. Be transparent about smoking, alcohol, diet, and how well you're following the plan. Ask for a longer visit if issues are complex. Ask about support groups. Request that your doctor write down the plan and next steps. And check with your insurance about coverage.
Great questions to ask: How severe is my disease? Which lab tests are positive (RF, anti-CCP)? Is there organ involvement beyond the joints? What treatment fits my history? What are the side effects, and how long until it works? Any medications to avoid if I'm planning a family? Will this affect my social life or intimacy? Do I need PT or OT? Are there support groups? How long will I be on therapy? What does remission mean? What is my insurance coverage? How often should I follow up?
Lifestyle changes matter: smoking cessation, regular dental visits (given the link to periodontal disease), maintaining a healthy weight, walking, yoga, swimming, and eating anti-inflammatory foods.
If you disagree or feel rushed, stay calm, focus on one or two problems per visit, and consider a short written note. To find a rheumatologist, use the Arthritis Foundation, CreakyJoints, Healthgrades, ZocDoc, the ACR website, your primary care doctor's referral, an academic hospital, or a trusted personal reference.
Dr. Maggie Cadet, MD