10 things every rheumatoidarthritis patient should know

By Mia James

1. Find a healthcare team you trust. With any chronic disease, your healthcare providers become your long-term partners in managing your health, so find a team you trust. Kelly Young, founder of the website rawarrior.com, a comprehensive resource about rheumatoid arthritis (RA), says that other patients can be helpful when you’re searching for providers. Local advocacy and support groups may be able to help you find other patients in your area. Kelly recommends asking another provider with whom you have a good relationship to recommend additional specialists.

2. Be comfortable asking questions. When it comes to your health, no question is too basic. Find doctors and other healthcare providers who listen to your questions and offer thoughtful answers. Kelly says that open communication between you and your doctor is a good sign that he or she is listening. For example, “You’ll know that they’re being open with you if you can have a copy of the doctor’s notes,” she says. Kelly also encourages patients to discuss all issues. She explains that when you’re managing RA, you may have many health concerns and that it’s important that they’re addressed. Make a list of what you want to discuss during appointments so that nothing is left out.

3. You’re not alone. A community of other people living with RA can be a source of comfort, support, and education. In-person support groups and online communities can help you connect with others facing similar challenges. As well, Kelly says that living with chronic disease can stress personal relationships. “The people around you can have a hard time understanding if they’re not living with [chronic disease],” she says. “It can take some of the stress off those relationships if you have someone whom you can talk to and let it out—who understands, who’s going through that, too.”

4. Understand that RA is more than a joint disorder. Because of the term arthritis, you may be prepared for RA to affect your joints. But be aware that RA is actually a systemic autoimmune disease that can affect a number of organs, including the eyes, heart, skin, and lungs. Kelly says that you can keep track of multiple symptoms by keeping a journal and taking care to report anything unusual. Because RA can affect the heart, she encourages newly diagnosed patients to see a cardiologist for a baseline report.

5. Know where to find reliable information. Accurate information about RA and available treatments will help you make informed decisions about your care. One reliable resource is rawarrior.com, and Kelly says that the site’s RA 101 page is a great source for background information on the disease. She recommends looking for resources that provide current, updated content and quote their sources. Be wary, she says, of websites and organizations making claims that sound too good to be true—such as claims to have found a cure for RA or one remedy for all symptoms.

6. Educate yourself about the disease. Reach out to other patients through support groups, online forums series, and blogs to learn what others experience, and seek information from trusted medical sources. “Don’t expect every symptom that others experience,” Kelly says, “and take one symptom at a time if it comes.”

7. Keep a record of your symptoms and any triggers that seem to make them worse. A written record of your symptoms and any side effects of medication can help you recognize patterns, such as events that make the symptoms worse, behaviors that make you feel better, and reactions to drugs. This information can help you and your doctors choose treatments and help you avoid triggers that make symptoms worse.

8. Be prepared for others not to understand what you’re going through. Many people may not understand RA and how it affects you. And because you may appear perfectly healthy, they may not understand the severity of the disease. Kelly recommends preparing yourself by realizing that people won’t always understand that you have limitations. With this in mind, ask for help when you need it and know that you may have to explain your condition. Kelly also says that you can be part of efforts to raise awareness about RA by joining organizations such as the Rheumatoid Patient Foundation (rheum4us.org).

9. You can live a full, active life with RA. There are a lot of resources available to help you live—and thrive—after a diagnosis of RA. Learn about the disease, work with your medical team to get appropriate care, and seek support. “We need to accept that we might not do everything we did before,” Kelly says, “but we might be able to do some of those things.” And, she explains, some days will be better than others. Surround yourself with people who understand the challenges you face and encourage you to care for yourself; these friends and loved ones will help you cope with the “down” days and celebrate the “up” days.

10. Research is making important advances. According to Eric Matteson, MD, chair of the rheumatology department at the Mayo Clinic in Rochester, Minnesota, there have been significant advances in RA research in the past 15 years. Treatment advances include drugs that more effectively control symptoms than did previous therapies. And he says that the search continues for even more effective drugs. “We’re making huge progress,” he says.