Singer-songwriter Rain Perry busted every RA myth out there to prove the disease can’t keep you down.
At age 22, musician Rain Perry thought life couldn’t get any better. Her burgeoning music career as a guitar-pickin’ singer-songwriter was taking off, and she seemed poised for super-stardom. But inexplicable pain in her hips, knees, wrists and hands sent Rain on a wild-goose chase through several doctors’ offices and multiple lab tests to find the source of her pain.
After a series of blood tests, X-rays and visits with a doctor who asked the right questions, she was diagnosed with rheumatoid arthritis (RA)—and the girl who was never without her guitar suddenly had to hang up her strings.
Unsure of what to do, Rain abandoned her dream of a music career and began raising a family. But she soon returned to her first love when a friend asked her to join his band on backup vocals, leading her to write songs again. That’s when she discovered that having RA came with a silver lining: It made her a better musician and songwriter. Here, she tells how to live with RA on your own terms—and how to dump these myths:
Myth No. 1: People with RA have to give up their work and hobbies—and lower their expectations.
Fact: You might have to change your expectations, but don’t automatically assume you’ll have to give up what you love.
“The diagnosis of RA has led to an interesting sort of blessing,” says Rain, now 44. In fact, she says, if it hadn’t been for developing RA, she might never have recorded the hit song “Beautiful Tree,” which became the theme song for the CW Network show Life Unexpected.
“I had to learn how to really be a musician and communicate things like the sound I wanted on my albums. RA has given me the gift of learning to really listen to music in order to understand how it’s made—and that helped me fine-tune my sound. I’m a better writer and performer now because I’m not constrained by what I can play on the guitar, only by what I can write in my head.”
Myth No. 2: Only old people get RA.
Fact: RA can occur at any age, and it often begins in middle age, according to the National Institutes of Health.
“If I had a dollar for every time someone said, ‘Isn’t that an old person’s disease?’ I’d be a very rich woman,” laughs Rain. So to fight the stereotypes, she’s very open about discussing her condition. “I’ve found if I talk about it and educate people, they’re more at ease and understand that osteoarthritis is what usually occurs in older people. RA can affect anyone.”
Myth No. 3: Most people with RA end up disabled or in a wheelchair.
Fact: Swedish researchers who did a long-term follow-up study of 183 RA patients reported that 94%—i.e., 172 of them—could still perform all their normal activities independently after 10 years with the disease, as published in the Annals of Rheumatic Diseases. And nearly half the group had either very little or only mild disability.
Sometimes Rain gets down because she’s unable to strum her guitar or do things other women her age can do, like go jogging. But her family keeps her honest. “My husband and family are wonderful. They help—but just enough. They won’t let me use RA as an excuse to not do something I really can do, like go to dinner, enjoy a movie, take a drive and so on. They won’t allow me to have a pity party for myself. They’re great at focusing on all the things I can do to remind me of all the wonderful things in my life.”
Myth No. 4: Because of stiff, painful joints, people with RA need to take it slow and rest most of the day.
Fact: Although rest is sometimes necessary, most people with RA will benefit by keeping active and trying to do their regular daily activities.
Just because swooshing down the slopes is tough for Rain doesn’t mean she skips out on family ski trips. “When my husband and kids go skiing, I recharge my batteries with a snowshoeing excursion. I do similar—yet different—things that are part of what everyone else might be doing. I’m there physically, even if it’s just to watch, so I’m part of the fun.” And if she’s not her best on certain days, “I let my family or friends know what’s going on, so they can understand I might be moving a little slower or feeling a bit sore.”
Myth No. 5: It’s too hard to raise a family if you have RA.
Fact: With proper treatment and the right attitude, folks with RA can still enjoy a happy home life.
Because Rain was diagnosed years before having her two daughters, RA was already a part of her everyday life when she became a mom. But even though she was used to having RA, she wasn’t prepared for the feelings of inadequacy that come from not always being “super mom.”
“It was tough, and I went through a few years of depression because I couldn’t always do things like play soccer or run around on field trips like other moms,” she says. Realizing that her husband, Bill, and daughters, Sarah and Stella, think she’s perfect just the way she is helped Rain snap out of it. “Instead of thinking I wish I could be like so-and-so or judging myself by another mom’s abilities, I threw myself into things I could do, like reading with them when they were little. Or being the loudest cheerleader instead of the one running up and down the sidelines.”