5. Don’t say: “I’ve read that turmeric can cure your arthritis.”
Bottom line: There is currently no cure for RA. Otherwise we’d all be mainlining the golden Asian spice like fiends. Many people with RA swear that turmeric has anti-inflammatory healing properties and that’s perfectly fine — it works for them. The problem arises when complete strangers start pushing it more aggressively than a drug dealer.
“Much of the advice I get is from people pushing this or that current fad, with plenty of anecdotal evidence to support the claims, but very little, if any, scientific evidence,” explains Kandice Seeber, 45, who was diagnosed with RA and fibromyalgia about five years ago. “Things like tart cherry juice, CBD oil, deep blue rub, joint supplements. I get frustrated when people offer unsolicited medical advice when they are not qualified to do that, they don’t know my medical history or me, and they only have their own experiences to talk about.”
6. Don’t say: “Go gluten free!” or “Stop eating sugar!”
This May, at the age of 15, Charlie Kaufmann was diagnosed with polyarticular juvenile idiopathic arthritis and hospitalized for six weeks. The unsolicited advice he received was immediate, in particular, about what not to eat. “I’m a teenager,” Charlie says. “So when people tell me to cut out gluten or red meat, I think, ‘I just want to eat pizza and burgers with my friends!’”
Many people in the arthritis community cut out gluten because they think it can help relieve their symptoms, but the relationship between RA and gluten is controversial. There seems to be a connection between people who have celiac disease — an autoimmune disorder in which your body cannot digest gluten — and other autoimmune diseases, but there isn’t good scientific proof that people with RA or other kinds of arthritis who don’t have celiac will necessarily benefit from avoiding gluten.
There is some evidence that too much sugar is bad for RA. For example, a 2014 study published in the American Journal of Clinical Nutrition found that women who drank one or more sugar-sweetened beverage a day had a 63 percent greater risk of developing RA than women who never or rarely consumed the stuff. A diet filled with excess sugar is also bad for weight management and is linked to an increased risk of heart disease and diabetes, which RA patients are more vulnerable to.
Indeed, Dooley has noticed that just eating a cookie at a conference “killed” her knees and made her foot drag. But sometimes she just wants that darn cookie. And we don’t want you to tell us how to change our diets, especially when the data on how food choices affects RA isn’t exactly conclusive.
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 RA, 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!”