How to Advocate for Yourself

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

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

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

To be informed

Strengthen yourself by learning as much as you can about RA. Learn 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 with RA. Join a support group where you can connect with other people, share experiences, and get advice on managing AR.

The more you understand AR, the more you will know what to expect and get what you need.

Choose the right rheumatologist

Find a doctor who is right 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 referrals from friends or RA discussion groups online on social media platforms like Facebook.

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

Team up with your doctor

“Let your doctor know you want to work as a team,” says Cadet. 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 participate in social activities? Tell your doctor what you hope so they can create a treatment plan that matches your goals.

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

Get to know your entire healthcare team

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

“The best way to defend yourself is to find out who can be a resource and to contact them,” says Batterman.

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Keep track of everything

Keep a journal to record your daily symptoms. “This will help your rheumatologist get a feel for your overall daily function,” says Cadet.

Write down all of your medications. Sometimes patient records 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 if they are from an outside facility.

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

To know itself

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

You are the expert on what life with RA is like for you, says Batterman. No one knows your pain, fatigue, stiffness, and side effects better than you do.

Be open and candid with your doctor

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

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

Get the most out of doctor visits

Keep a list of questions to ask on your next visit. Write them down so they are ready when you see your doctor.

Ask your doctor to answer your questions early, 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 is telling you.

Have your doctor write down your treatment plan and a checklist of things to do after the visit, Cadet says. This way everyone is on the same page and you know what to do outside of the office.

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Speak for yourself

“Use your voice,” says Cadet. If you think something is wrong, in a hurry, or your doctor is not listening to you, speak up. If this is a complex issue, ask for a longer visit so you have enough time to discuss it.

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

Don’t be afraid to get a second opinion or a new doctor

If you’re not comfortable with your doctor, diagnosis, or treatment plan, talk to your doctor. If that doesn’t help, get a second opinion or find a new doctor.

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

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Sources

SOURCES:

Adena Batterman, LCSW, MSW, Hospital for Special Surgery, New York.

Magdalena Cadet, MD, clinical rheumatologist; participating partner, NYU Langone Medical Center, New York.

Arthritis Foundation: “Self-Management: What You Need to Know.”

Arthritis Society: “Guide to Self-Advocacy”, “Actively Participate in Planning Your Treatment”.

Joint health: “Self-advocacy tips”.

Rheumatoid Arthritis Support Network: “Rheumatoid Arthritis Resources”.


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