How to Advocate for Yourself When You Have Rheumatoid Arthritis

4 min read

To stay healthy and manage your rheumatoid arthritis (RA), it’s best to take an active role in your treatment.

Understanding your disease, weighing your options, and forming a partnership with your doctors will help you advocate for what you need.

“Remember than you are at the center of your care,” says Adena Batterman, a licensed social worker and senior manager of inflammatory arthritis support and education programs at the Hospital for Special Surgery in New York City.

Empower yourself by learning as much as you can about RA. Find out about symptoms, treatment options, medications, and management strategies.

Get information from online resources like the American College of Rheumatology, the Arthritis Foundation, and the Arthritis Society.

Talk to people living with RA. Join a support group where you can connect with others, share experiences, and get advice about managing RA.

The more you understand RA, the more you’ll know what to expect and get what you need.

Find a doctor who’s a good fit for you. “Ask your internist or primary care provider for personal suggestions,” says Magdalena Cadet, MD, a clinical rheumatologist in New York City. Get personal references from friends or online RA chat groups on social media platforms like Facebook.

Organizations like the American College of Rheumatology and the Arthritis Foundation have lists of doctors online. You can also contact your insurance company.

“Let your physician know that you want to work together as a team,” Cadet says. Instead of relying on your doctor to make all the decisions, approach it as a partnership.

Talk about what’s important to you and set goals together. Do you want to minimize flare-ups? Is it important that you can walk a certain distance and take part in social activities? Tell your doctor what you hope for so they can create a treatment plan that fits your goals.

“Without your involvement and voice in all of this, your needs are unknown and unheard,” Batterman says.

Try to build a relationship with everyone on your team, including your nurses, social workers, physical therapists, and occupational therapists. They’re all part of your team and can be a source of information and support.

“The best way to advocate for yourself is to know who can be a resource and reach out to them,” Batterman says.

Keep a journal to log your daily symptoms. “This will help your rheumatologist get a sense of how your daily overall function is,” Cadet says.

Write down all your medications. Sometimes patient charts aren’t updated, Cadet says. Keeping a list also helps team members spot possible drug interactions.

Keep your lab and test results and bring them to your doctor’s visit if they’re from an outside facility.

Get the facts from your insurance company. Ask about medications, lab tests, and imaging and find out what’s covered by your plan.

Pay attention to how you feel. What are your symptoms, pain levels, and medication side effects? Knowing your body and how it responds to different treatments can help your doctor understand what works best for you.

You’re the expert in what living with RA is like for you, Batterman says. Nobody knows your pain, fatigue, stiffness, and side effects better than you.

“Be transparent and open with your doctor,” Cadet says. Don’t leave information out, even if you feel shy or embarrassed.

Be honest about lifestyle choices like smoking, drinking, or eating poorly. If you’re not following your treatment regimen, tell your doctor. The more they know, the better care they can give you.

Keep a list of questions to ask at your next visit. Write them down so they’re ready when it’s time to see your doctor.

Ask your doctor to address your questions at the beginning or schedule a longer visit if you have a lot of questions. If you don’t understand something, ask for clarification.

Bring a family member or friend to support you and help you understand what your doctor tells you.

Ask your doctor to write down your treatment plan and a checklist of things to do after the visit, Cadet says. That way everyone’s on the same page and you know what you need to do outside of the office.

“Use your voice,” Cadet says. If you feel like something isn’t right, you’re being rushed, or your doctor isn’t listening, speak up. If it’s a complex issue, request a longer visit so there’s enough time to talk it through.

“It can be helpful to speak with a social worker if there’s one on staff,” Batterman says. They may help you navigate difficult conversations and find the right language and tone. Bring a trusted friend or family member for support.

If you’re uncomfortable with your doctor, their diagnosis, or your treatment plan, tell your doctor. If it doesn’t help, get a second opinion or look for a new doctor.

“Understand that your doctor is human,” Batterman says. “But always expect that you should receive good care.”