Rheumatoid arthritis happens when your immune system attacks your joint linings. It causes swelling and intense pain, most often in your ankles, hands, and knees. It usually shows up in middle age, but young people get it, too.
Because RA isn’t like other types of arthritis, most people don’t understand it. Here’s what not to say to people with RA.
“A lot of people don’t understand that most of the time, their grandma’s arthritis is osteoarthritis,” the natural wearing away of cartilage around the joints, says Stacy Courtnay, 42, of Atlanta. “There are over 100 types of arthritis. The joint pain may be similar, but RA can also affect your organs, eyes, skin, and so on.”
Rick Phillips, 63, who lives near Indianapolis, has had RA for 20 years. He agrees this one’s annoying, even though he’s a grandfather now. “In my younger days, being compared to Grandma was a little bit disheartening. It can take the air right out of a person’s ego.”
“I am sick, but you can’t see it,” says Angela Lundberg, who is 42 and lives in Minneapolis. “I feel horrible. I’m in bad pain, which is affecting my life daily, but I don’t look like it.”
Courtnay recalls being on the New York subway in a packed train. She needed a seat, but people ignored her because they couldn’t tell she was ill. Phillips says this happens to him wherever he goes, too. “At one point I had to use one of those electric carts in the grocery. It looked like I was lazy — an old guy riding around in a cart because he was too lazy to walk. I heard the comments. ‘Hey, he can stand. Why can’t he walk?’ These comments were so upsetting.”
Lundberg was only 17 when she first started having RA symptoms. She was diagnosed at 18. I’ve heard that so many times, and it’s wrong, she says. “I’m already depressed and anxious, with severe pain as a young person. I think it’s a special kind of challenge when you get it when you’re young. Even babies can get RA. It’s not just for old people.”
Cathy Kramer, who’s 53 and lives in Naperville, IL, says this one’s super jarring. “I could barely lift my teacup to my mouth when a dad in our playgroup went into a long speech on if I would only work out — which I did when I could — my joints would move with a lot more ease.” His comments seemed to put down other things she was doing. “At that time, I was literally trying everything,” she says.
“People need to understand that the fatigue associated with RA can be just as bad or even worse than the pain,” Courtnay says. “My immune system is in overdrive and constantly fighting itself, so it takes a toll and makes me tired all of the time. I have to take time for myself every day to lay down and rest so I can make it through the day.”
“A healthy diet can certainly help with feeling better overall, but it’s not going to cure me,” Courtnay says. “I’ve heard so many times that my RA has been caused by something I did, or didn’t do — and that it’s an easy fix. That’s not the case. I can’t cure myself with a diet. I can help myself feel better by eating healthy and taking certain vitamins and supplements, but you can’t cure RA.”
This remark is even more annoying than ‘You’re too young,’ Lundberg says. “It’s putting me in a bad position, because how am I supposed to answer that? It’s a way of invalidating me and my condition, and I feel sort of disrespected.”
This is a friendship-breaker for Kramer, who cites several coffee dates that turned into sales pitches. “This one burns me up,” she says. “It’s tough to share your RA story. So when friends begin selling a product and come back to you, using a vulnerability, it really makes you feel used.”
Lundberg says she gets product-hawking emails. “I’m on top of taking care of my RA,” she says. “And I’ve tried many things. It’s stressful enough living with this disease, and dealing with my medications and my personal treatment plan with my doctor. … People with no clue telling me what to do is very irritating.”
Courtnay says this one really fires her up. “You can’t compare the disease to something else,” she says. “You don’t have the same thing at all. It feels like they’re not truly listening. A lot of times, you just want someone to listen. Not batter you with a bunch of advice.”
“There seem to always be folks who have stories of people who were on an RA drug and then got cancer,” Kramer says. “They say, ‘You could heal yourself because pharmaceutical companies are just trying to get your money.’”
Or sometimes people will advise them to change their meds. “I explain the medication regimen I use,” Phillips says. “Usually, I have told this person several times before. So it’s this never-ending conversation.”
This one can go way overboard, Phillips says. “‘You know, my dog or cat has hip arthritis.’ Or my worst one of all was, ‘You know, my hamster died of arthritis.’ Oh for heaven’s sakes, your hamster had arthritis? ‘Yes, he hurt so badly he stopped using his wheel. …’ Please do not tell me your hamster died of arthritis.”
“This really bothers my wife,” Phillips says. “She’s often asked, ‘When will he get better?’ Her response is always the same — never. In fact, just for fun, she’ll say, ‘He has three chronic diseases, he’s not getting better.’” Phillips has had diabetes most of his life and more recently was diagnosed with ankylosing spondylitis, a type of arthritis type that affects your spine.
Lundberg says thoughtful questions can make for a good conversation. “You might say, ‘I didn’t know young people could get arthritis.’ Or ask, ‘What is your condition really like?’”
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