When you’re diagnosed with rheumatoid arthritis (RA), you and your doctor might talk about symptoms like joint pain and medications to manage your disease. But RA, an autoimmune disease that causes inflammation, can affect your body and lifestyle in unexpected ways and your doctor might not mention them. Sometimes you have to learn how RA will affect you and your life by trial and error.
“Your mind might be willing to do a project, but your body might not be,” says Dawn Smith-Popielski of St. Louis, MO. “Even though my RA is usually pretty well controlled, there are days when I’ve planned a project for the yard or around the house that ends up taking twice as long. Living on RA time sometimes means making modifications.”
Carolyn Amisano was diagnosed with RA in her early 30s with two young children. She expected pain, but not extreme fatigue or emotional ups and downs.
“You don’t realize how RA affects everything: getting in and out of your car, getting dressed, making a bottle for your baby. I remember just sitting on my couch and thinking, ‘I may not be able to do this,’” she says.
Amisano, who lives in Suwanee, GA, found it extremely painful just to button her blouse or grip her toothbrush. “Mornings are hard with RA. When I was invited to school meetings for my children, I had to say no and that I could only deal with things later in the day.”
Over the years, Amisano’s RA medications have included gold salts, prednisone, methotrexate, and newer biologics like adalimumab (Humira) and infliximab (Remicade). Each new drug came with new instructions and side effects.
That’s challenging because biologics for RA are usually mail-ordered through a specialty pharmacy, not filled at your corner drugstore, says Cheryl Crow, who’s had RA for 18 years and treats RA patients as an occupational therapist (OT) in Seattle.
Some medications require you to get an infusion, which requires an in-person visit to a clinic or hospital. Others require you to give yourself a shot at home and may need to be temperature-controlled in your refrigerator. These special needs can be challenging.
Smith-Popielski brings freezer packs on trips to keep her Humira injection pens cold. She was once on a trip when a snowstorm grounded all flights home. “I didn’t have enough medicine with me and missed injecting it on my designated day. Now, I always pack an extra pen in case of delays and a week’s worth of other medications.”
Doctor’s Visits and Insurance
Once you’re diagnosed with RA, you may need to see your rheumatologist every 3 months for exams and bloodwork at first, or schedule drug infusions every few weeks, Crow says. “This can be a steep learning curve for people who previously considered themselves healthy and only had to visit the doctor once a year for a physical.”
It’s often up to you to find out if your insurance company will cover your new prescription without requiring you to try out cheaper medicines first, she says. “Many people are surprised how hard it is to navigate the logistical side of care and learn a whole new language of insurance copays, coinsurance, special policies for their medications, or medical terms like flare.”
Come to each visit with questions for your rheumatologist about your disease course and any new treatment options, Amisano says. “Find out what you should expect from any new medication. My doctor was always good at explaining how every new drug worked. Read everything you can, so you can ask her, ‘Is this normal?’ Don’t be afraid of the unknown.”
Expect the Unexpected
After years of living with RA, you’ll find that it doesn’t just affect your joints, but it can put you at risk for other autoimmune diseases, says Smith-Popielski. She was later diagnosed with Sjögren’s syndrome, which causes eye inflammation and dryness.
“If your rheumatologist hasn’t recommended that you get a checkup with an ophthalmologist, do it,” she says.
People with RA are at higher risk to develop depression or anxiety as well, and uncertainty is a constant, says Crow.
“It’s been a painful but beautiful process for me to learn how to embrace what’s happening in the present moment, even if that includes discomfort and pain, and to learn that I can still live a meaningful, full life. Acceptance doesn’t mean resignation or giving up hope. I still hope for a better future, while I accept that the present moment is what it is.”
After having RA for more than 30 years and getting multiple joint replacement surgeries, Amye Leong survived an unprecedented crisis: her family’s home in Santa Barbara, CA, was destroyed in a mudslide in 2018. They ran from the house with nothing but the clothes they were wearing.
“My stress level went off the charts. My blood pressure went up, and I had never had that problem before. It turned my RA into a disease I didn’t recognize, flaring in joints where I’d never had it before, including TMJ [temporomandibular joint disorder] on both sides of my jaw,” says Leong, founder and CEO of Healthy Motivation, a health consulting and patient advocacy firm.
She began practicing meditation and yoga daily, often with her husband. These mind-body practices help her relax, stay centered, and cope with her RA. “You have to at least try something. After a week of doing yoga, ask yourself if you feel a difference. I did.”
Hacks to Make Life Easier
These hacks can make daily tasks easier and gentler on your joints:
Use jar-opening aids. “I have a multi-sized one I use often in my kitchen. Also, I have a foam built-up handle to widen the grip on small items like pens and eyeliner pencils,” Crow says. Use wide-handled kitchen gadgets for easier gripping and lever-style door handles versus knobs.
Document your current prescriptions in your smartphone when you travel, says frequent flier Smith-Popielski. “Travel bags with wheels and comfortable handles are essential for traveling. Always have outfits for your bad joint days: clothes, bras, or shoes that are easy to get in and out of,” she says. “Use health apps to manage doctor’s visits and medications. It’s easier to keep track of appointments, refills, and test results, and requesting refills is faster than calling the doctor’s office and playing phone tag.”
Regular exercise will help you feel and function better with RA. “It could be gardening or taking a walk, but do something to get your heart rate up every day. Invest in a good pair of walking shoes and walk!”
If RA symptoms make it too painful to do the hobbies you love, such as sewing or golfing, tell your rheumatologist, Crow says. They can refer you to a therapist to help you adapt tasks or movements so you can do them with less pain and strain. “Don’t afraid to be really specific about your goals for your unique life.”