“You look really bloated.”
I don’t need to dig up a scientific study from Harvard to prove that telling someone they look fat is offensive (at best) and hurtful (at worst). And yet, that’s exactly what my friend recently said after meeting me for dinner an hour after I’d had an infusion.
She probably wasn’t wrong. After all, I’d just had a giant bag of liquid intravenously injected into my body to treat my rheumatoid arthritis. And it’s true that I’d mysteriously gained eight pounds since I started infusing and had been changing my anti-inflammatory NSAIDs like underwear, desperately trying to find one that didn’t make me retain water and feel like I was going to explode out of my skin.
So, yes, it’s definitely possible I looked like a pumpkin head at dinner. But that’s not the point. Who says that? Unfortunately, a lot of people say a lot of very inappropriate things to us folks with RA. Though many may have good intentions under the guise of worrying, they often don’t understand what it’s like to live with rheumatoid arthritis and why their words sting.
I talked with a group of people with rheumatoid arthritis for their take on the things it’s best to avoid saying — because we’ve heard them a gazillion times; because they’re offensive, judgmental, or dismissive; or just … because.
Share them with your friends, family, and even your doctors, so in the future they know what’s OK — and so not OK — to say.
1. Don’t say: “You’re too young to have arthritis!”
Rheumatoid arthritis (or psoriatic arthritis, or ankylosing spondylitis) is not that nagging pain your grandma complains about in her hip. RA is a very serious autoimmune disease, in which your immune system mistakenly attacks your own body’s tissues and causes severe joint pain, stiffness, severe fatigue, and sometimes deformity, usually in the hands, shoulders, knees, and/or feet. It affects men, women, and children of all ages.
RA is often confused for osteoarthritis, in which the protective cartilage on the ends of the bones wears down over time. OA affects millions of adults, and tends to occur with age. “I wish RA did not have the word arthritis in it,” says Mina Hartwell, 48, who was diagnosed with rheumatoid arthritis six years ago. “It’s awful that, because of that word, it is equated with an older person’s degenerative disease. There is a huge difference.”
Julie Anders, 55, has lived with RA for 12 years and is more forgiving when people say this to her. “I know it’s just coming from someone who really doesn’t know the difference or the fact that children suffer from it also,” she says. “It’s a complex disease so I don’t expect the general public to know that. I use it as an opportunity to share how RA can come on at any age and that it is an autoimmune disease.”
2. Don’t say: “At least you don’t have cancer. That would be worse. I mean, like, you won’t die from it.”
It’s not fair to compare RA to cancer because it’s apples to oranges. RA can be excruciating and is possibly life-threatening. Lea Dooley, 48, who was diagnosed with RA four years ago and fibromyalgia just last year, feels “fortunate to have been diagnosed during the golden age” of RA — during the recent emergence of biologic drugs that can help prevent long-term joint damage — but the truth is, if RA is left untreated, major organs can shut down. And research shows having RA does increase your risk of co-occuring diseases, such as heart disease, respiratory issues, and other problems that result from being under an assault of chronic inflammation.
3. Don’t say: “But you don’t look sick!”
There’s a reason #butyoudontlooksick is one of the more popular Instagram hashtags among the chronic illness community. While there is no cure for RA, patients can experience glorious periods of remission with little pain. Unfortunately, without warning or reason, RA can flare up from time to time and it can be painstaking to simply get out of bed or tie your shoes.
“When I am having a good day,” Hartwell explains, “you know like wearing makeup and a shirt with buttons, someone may says to me, ‘Oh, you must be better!’ Nope. Not better. Just feeling a little less miserable today but thank you for noticing!”
4. Don’t say: “You’re probably just stressed out. Stress kills.”
Research remains inconclusive as to what role stress plays in the onset of rheumatoid arthritis. Some studies confirm the link; others, like a recent Dutch study, found no correlation between psychological stress and early signs of joint pain. RA is thought to be caused by a number of factors, such as genetics, infection, or environmental factors like smoking, but nobody knows for sure yet.
When it comes to RA flares, stress can be a factor among a host of other triggers, but it doesn’t operate in a vacuum. So when people tell Briana Redulla, 33, she needs to “relax” to help control her disease, it really bugs her, especially because she lives in Hawaii, one of the most chill places on earth! Let’s not blame the victim, shall we?