7. Don’t say: “You shouldn’t take so many drugs!”
Using natural remedies to help manage chronic illness is certainly having a cultural moment right now (thanks to the popularity of sites like Goop and TV shows like Dr. Oz’s, alongside the rise of cold-pressed juice chains and Paleo-inspired food brands), but many RA patients don’t want to be pressured into going the holistic route.
“I love the drugs that facilitate my health, so it bugs me when people are skeptical of drugs,” notes Patricia Flynn, 52. Medical choices are personal, so mind your own beeswax! (Unless, of course, beeswax is found to cure RA.)
8. Don’t say: “This would go away if you’d just lose weight”
“People seem to think that because I am a large person, I brought RA on myself,” says Seeber. “While this might be true, it’s incredibly dismissive. Weight loss is certainly a good idea and would help solve a lot of my health issues. The thing is, doing so while one is in a great deal of pain on a daily basis is very difficult if not impossible. I’ve lost weight many times — usually in short bursts when my pain is better — but always gain it back when I am in pain and can’t move as much. So it’s kind of a catch-22. If I could lose weight, my RA would improve. If I could just get rid of some of this RA pain, I could exercise more and lose weight. When people point out weight loss as an easy solution to RA, they don’t have the whole picture.”
9. Don’t say: “You should try yoga!”
In addition to their vociferous diet opinions, the peanut gallery has too many opinions about how people with RA should get exercise. A very common misconception is that yoga would be good for all people with rheumatoid arthritis, because of the stretching. This may be true for some, but not others.
When Jennifer, 44, was diagnosed three years ago, “everyone was always telling me I should do yoga,” despite the fact that her wrists were tender and sore. “‘No, I shouldn’t. Putting all of my weight on my inflamed joints is not helpful,’” she’d reply. “They’d say, ‘You need to strengthen your wrists.’” To which she would respond, “No, I don’t. I have a disease that’s in my blood and attacks my joints. I don’t have weak joints!”
10. Don’t say: “Just rest up and you’ll feel better”
“Wrong!” insists Stefanie Foster Freeman, a holistic health coach and author of Life’s a Journey, Are You Packed? Living and Thriving with Juvenile Rheumatoid Arthritis. “You definitely don’t want to stiffen up. Moving actually helps my joints to feel better.” Every patient has different limits when it comes to exercise, but the research is pretty clear that for most people with RA, it’s important to move as much as possible to maintain flexibility, get good sleep, and keep that heart healthy.
My doctor told me I’d never run a marathon, and he’s right, I’m not going to run a marathon. (I never wanted to anyway!)
Though my friend called me bloated at dinner, she didn’t know that I work out four to five times per week and do intense HIIT training. I can’t run or jump but I modify the circuits and do as much as I can. Other RA patients find Pilates, walking, swimming, tai chi, weight lifting, or even cross country skiing, to be easiest on the joints. How RA patients choose to exercise is between them and their doctor.
11. Don’t say: “You can’t do that, you’ll hurt yourself!”
After Charlie’s hospital stay, his parents didn’t allow him to help out around the house anymore, doing chores like mowing the lawn; his coaches didn’t want him to play hockey. That upset him. “I don’t like when people say I can’t do the things I used to be able to do or put limits on me,” says Charlie. “They think everything hurts.” Like many people with RA, he has good days and bad days, where something new hurts and he can’t walk well or open doors. Nevertheless, he persists. “I’m playing hockey. I fix things around the house. I still want to help and I can depending on the day.”
12. Don’t say: “Are you sure you aren’t depressed? You sleep a lot.”
Lea Dooley’s husband Ted has always been supportive, but as a clinical psychologist, he worried about the number of naps she was taking, and it caused some issues between them. Chronic fatigue is a real issue for patients with rheumatoid arthritis, but research also backs up Ted’s concerns. One 2014 study found that nearly three-quarters of RA patients had some degree of depression; their symptoms correlated with the severity of their RA disease.
But mental health is a sensitive subject. It’s important to express concern about how a loved one is doing emotionally, but make sure you choose your words and tone carefully. You want to sound like you’re coming from a place of love and concern, not judgment.
13. Don’t say: “You always flake out on plans!”
One of the worst things about RA is its unpredictability. “You never know if it’s going to be a good day or a bad day,” says Eric Kops, 48, who’s one of the “super rare/unlucky” people who has both rheumatoid and psoriatic arthritis. “You can try to eat well and take care of yourself but there are no guarantees.” People without RA don’t understand that when you have a flare, you need to stay in, rest, and recover. “Even going to a movie can be too much when you are just sitting there and some parts of your body are just throbbing in constant pain.”
14. Don’t say: “Tough it out”
Kops has heard “push through it” more times than wants to, and it’s not just because he’s a guy. Redulla has also been lectured with “mind over matter” by well-meaning but ill-informed people. The power of positive thinking is lovely but let’s not overstate its ability to help people with RA feel less pain. Rheumatoid arthritis is a lifelong disease that is currently incurable. Friends and family, the best way to be an ally to someone with rheumatoid arthritis is to practice kindness, understanding, and patience. And, please, take a moment to think before you speak!
15. Do say: “Wanna read this?”
Instead of insisting that something — whether a so-called superfood, a new lifestyle tweak, or a breakthrough medication — will treat someone’s RA, you’re better off asking they’re interested in learning more. You can say, “Hey, I read a cool article about something related to RA. Can I send it to you?” Give us the option to look into it if and when we want to.
16. Do say: “Do you feel up to doing _____?”
“Ask me if I want to do something instead of assuming that I can’t,” Charlie explains. “Let me decide for myself what I can do. When people are overprotective, I know it’s coming from a good place of caring and love, but they don’t realize how upsetting it is. Even though I’m young, I need to make decisions for myself about my own health and body. I need to test myself and it’s going to change day by day.”
17. Do say: “I can see you’re struggling today. What can I do to help?”
This is a simple way of expressing sympathy for what someone else is going through, as well as compassion, by letting them know you want to help if they need it.
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