RA: What Not to Say

Rheumatoid arthritis occurs when your immune system assaults your joint linings. It causes swelling and intense ache, most frequently in your ankles, palms, and knees. It normally reveals up in center age, however younger individuals get it, too.

Because RA isn’t like different forms of arthritis, most individuals don’t perceive it. Here’s what to not say to individuals with RA.

“Oh, you have arthritis? My grandma does too.”

“A lot of people don’t understand that most of the time, their grandma’s arthritis is osteoarthritis,” the pure sporting away of cartilage across 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 close to Indianapolis, has had RA for 20 years. He agrees this one’s annoying, despite the fact that 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.”

“You don’t look sick.”

“I am sick, but you can’t see it,” says Angela Lundberg, who’s 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 recollects being on the New York subway in a packed prepare. She wanted a seat, however individuals ignored her as a result of they couldn’t inform she was unwell. Phillips says this occurs 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.”

“You’re too young for that.”

Lundberg was solely 17 when she first began having RA signs. She was identified at 18. I’ve heard that so many instances, and it’s mistaken, 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.”

“Have you tried exercising?”

Cathy Kramer, who’s 53 and lives in Naperville, IL, says this one’s tremendous 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 feedback appeared to place down different issues she was doing. “At that time, I was literally trying everything,” she says.

“You need to take another nap? You can’t still be tired.”

“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.” 

“Have you narrow out gluten … sugar … processed meals … meat … and so forth.? It labored for my cousin.”

“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 comment is much more annoying than ‘You’re too younger,’ 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.”

“I’m selling … [essential oils, supplements, etc.] and knowing you have RA, I thought of you.”

This is a friendship-breaker for Kramer, who cites a number of espresso dates that became gross 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 will get 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.”

“I understand, I had tennis elbow [or other body condition] and it really hurt.”

Courtnay says this one actually 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.”

“Medications will kill you.”

“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 generally individuals will advise them to alter 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.”

“My pet has arthritis.”

This one can go method overboard, Phillips says. “‘You know, my canine or cat has hip arthritis.’ Or my worst one in all 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 don’t inform me your hamster died of arthritis.”

“When will you be cured?”

“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 extra just lately was identified with ankylosing spondylitis, a kind of arthritis sort that impacts your backbone.

What to Say

Lundberg says considerate questions could make for a superb dialog. “You might say, ‘I didn’t know young people could get arthritis.’ Or ask, ‘What is your condition really like?’”