8 Things I Didn’t Know About Rheumatoid Arthritis Until It Happened to Me

5. Wise Use of Social Media and Online Support Can Help

One thing that Deb Constien, 51, of Sun Prairie, Wisconsin, learned is that you can post a message on social media and get help — sometimes instantly. Constien, who was diagnosed with RA at age 14, might say, “Hey, I’m trying this new medication, anyone have experience with it?” 

Fritz agrees. She often goes on the CreakyJoints website, an online community of millions of people with all forms of arthritis and their caregivers worldwide. “My family is very empathetic, but sometimes they don’t know what I should do,” she says. Her online friends, on the other hand, speak from experience.

6. Rheumatoid Arthritis Affects Your Friends and Family, Too

“I didn’t anticipate how much RA would impact my family and friends,” Fritz says. “A lot of the impact is related to my fatigue.”

Instead of soldiering through painful RA flares like she used to, she says she’s become more honest. If she’s having a flare or is very fatigued, she begs off social events and reschedules. She also tries to space out events requiring her physical energy like hikes. And her honesty is lovingly repaid in other ways: Her husband, for example, knowing she’s having a flare, will help her out by cooking, cleaning, or picking up groceries.

7. Setting Limits Is Crucial for Your Health and Well-Being

Like many with RA, Constien has work and family responsibilities. She’s found that learning when to limit requests on your time and energy can help in the long run. Her son’s high school has a huge benefit each year, for instance, and when they asked her to chair the procurement committee — which involves a lot of work in soliciting donations from merchants and others — she compromised.

“I said, ‘I’ll help, but not chair it,'” she says. And she did much of the work online — another energy saver. “I made my role smaller than what they asked,” she says, yet she had the satisfaction of helping, and they had one more willing worker.

8. Trust Yourself and Your Instincts

Dr. Manno has some helpful hints for the newly diagnosed: ”Everyone is going to offer you free advice about RA,” she says, but you shouldn’t “assume the rest of the world knows anything about RA.” Instead, work with your healthcare team to get the best advice.

She also offers this bottom-line advice: Trust yourself and your instincts. “If you have RA, you’re already an expert. You know a whole lot more than most of the population.”

8 Things I Didn’t Know About Rheumatoid Arthritis Until It Happened to Me

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