How to Advocate for Yourself
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To stay healthy and manage your rheumatoid arthritis (RA), itâs 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.
âRemember than you are at the center of your care,â 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.
Be Informed
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 youâll know what to expect and get what you need.
Choose the Right Rheumatologist
Find a doctor whoâs a good fit for you. âAsk your internist or primary care provider for personal suggestions,â 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.
Partner With Your Doctor
âLet your physician know that you want to work together as a team,â Cadet says. Instead of relying on your doctor to make all the decisions, approach it as a partnership.
Talk about whatâs 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.
âWithout your involvement and voice in all of this, your needs are unknown and unheard,â Batterman says.
Get to Know Your Entire Health Care Team
Try to build a relationship with everyone on your team, including your nurses, social workers, physical therapists, and occupational therapists. Theyâre all part of your team and can be a source of information and support.
âThe best way to advocate for yourself is to know who can be a resource and reach out to them,â Batterman says.
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Keep Track of Everything
Keep a journal to log your daily symptoms. âThis will help your rheumatologist get a sense of how your daily overall function is,â Cadet says.
Write down all your medications. Sometimes patient charts arenât 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 doctorâs visit if theyâre from an outside facility.
Get the facts from your insurance company. Ask about medications, lab tests, and imaging and find out whatâs covered by your plan.
Know Yourself
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.
Youâre 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 Open and Upfront With Your Doctor
âBe transparent and open with your doctor,â Cadet says. Donât leave information out, even if you feel shy or embarrassed.
Be honest about lifestyle choices like smoking, drinking, or eating poorly. If youâre not following your treatment regimen, tell your doctor. The more they know, the better care they can give you.
Make the Most of Doctor’s Visits
Keep a list of questions to ask at your next visit. Write them down so theyâre ready when itâs 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 donât 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 everyoneâs on the same page and you know what you need to do outside of the office.
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Speak Up for Yourself
âUse your voice,â Cadet says. If you feel like something isnât right, youâre being rushed, or your doctor isnât listening, speak up. If itâs a complex issue, request a longer visit so thereâs enough time to talk it through.
âIt can be helpful to speak with a social worker if thereâs one on staff,â 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.
Donât Be Afraid to Get a Second Opinion or a New Doctor
If youâre uncomfortable with your doctor, their diagnosis, or your treatment plan, tell your doctor. If it doesnât help, get a second opinion or look for a new doctor.
âUnderstand that your doctor is human,â Batterman says. âBut always expect that you should receive good care.â
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