Rheumatoid arthritis is often called a “silent disease.” Why? Unlike many other illnesses, you can’t always tell when a person with RA is feeling their worst.
That’s just one of the things people with the condition want you to know, whether you’re newly diagnosed with RA or someone close to you has it.
We asked people with the disease to speak out. Here’s what they had to say.
No. 1. “Just because I look fine doesn’t mean I am.”
“Even though I may look healthy and happy on the surface, [my RA means] I suffer with daily, often severe pain,” says Meredith Hutter Chamorro, 45, of Pennsylvania.
That’s because people with RA are always dealing with joint issues. Sometimes they get flare-ups, too. That’s when their symptoms get worse, with the disease causing painful, swollen joints and extreme fatigue.
“Some have gotten dirty looks, or worse, when they park in a handicapped spot or ask for assistance,” she says.
What the doubters don't realize is that rheumatoid arthritis flares can make it painful or impossible to do everyday tasks, like shopping or walking across a parking lot.
RA leads to joint damage, too. That can cause disability, and some people end up needing serious medical treatments like joint replacement surgery. It can hurt other parts of the body, too, like the eyes, heart, and lungs.
“Sometimes others just don’t understand what someone with RA is going through, and don’t offer support or empathy when they should,” says Rochelle Rosian, MD, a rheumatologist at the Cleveland Clinic.
If you have a friend or relative who has RA, it’s okay to talk with them about it. Ask how you can help them when they're feeling bad, and how you can tell when they could use help.
2. “It’s not ‘just’ arthritis.”
"Too often, people hear ‘arthritis’ and think minor aches and pains," says Dina Neils, 30, a CreakyJoints.com blogger living in California. Neils was diagnosed with RA 18 years ago.
“The truth is, living with RA means you will most likely be on a variety of medications for the rest of your life,” she says. “You may need multiple surgeries or joint replacements, too.”
Osteoarthritis, the most common form of arthritis, is typically caused by wear and tear. It's more common as people get older. Rheumatoid arthritis is an autoimmune disorder that can set in at any time in a person’s life.
“I’ve had so many people say, 'Oh, arthritis? Getting older sucks, doesn’t it?'” Chamorro says. “That’s really irksome.”
3. “A nap isn’t going to make me feel less tired.”
“Tired doesn’t begin to describe how I feel if I’m having a bad day or bad week,” says Barbara Searles, author of Kick Pain in the Kitchen. She was diagnosed with rheumatoid arthritis 5 years ago.
Chronic fatigue affects 89% of people who have the condition, and it can sap their strength, Rosian says. She tells her patients with RA to be realistic about how active they can be when fatigue sets in. She also suggests they share how they're feeling with their friends and family members.
“You can say, 'When I say I’m having a bad day, it’s like having the flu and a fever of 102. I may seem fine, but I am really struggling,'” Rosian says.
But if you have RA and you’re constantly exhausted, it can be a sign that your treatment isn’t working, and you should see your rheumatologist right away, she says.
4. “A pill or diet won’t cure me.”
“After I was first diagnosed, people would come up to me and say things like, 'You should go gluten-free!' or ‘You should try krill oil,’ like that would fix everything,” Searles says.
In reality, “cutting out gluten and most processed foods has eased my symptoms, but RA is a genetic disease. No lifestyle change will ever make it just go away,” she says.
5. "RA affects your whole family."
Joy Ross, 26, was diagnosed with juvenile rheumatoid arthritis and inflammation of the eye, or uveitis, at age 3. Along with joint problems, she had serious vision damage and went blind in 2008. That same year her two young daughters, now ages 9 and 12, were diagnosed with RA.
“It was so scary when I learned that they had the same genetic disease that cost me my vision,” says Ross, who lives in Portland, OR.
Today, though, Ross says she and her girls are thriving, thanks in part to help from her husband, George.
“He gives all three of us shots and helps out with, well, just about everything,” she says. “This disease takes a toll on every person in a family.”
It’s great to lend a hand to a person with RA, Ross says. But consider offering help to their partner or kids, too.