RA: What Not to Say
Rheumatoid arthritis occurs when your immune system attacks your joint linings. It causes swelling and severe pain, most often in the ankles, hands and knees. It usually appears in middle age, but young people understand it too.
Because RA is not like other types of arthritis, most people don’t understand it. Here’s what not to tell people with RA.
“Oh, do you have arthritis?” My grandmother too.
“A lot of people don’t understand that most of the time their grandmother’s arthritis is osteoarthritis,” the natural wear and tear of the cartilage around the joints, says Stacy Courtnay, 42, of Atlanta. “There are over 100 types of arthritis. Joint pain can be similar, but RA can also affect your organs, eyes, skin, etc.
Rick Phillips, 63, who lives near Indianapolis, has suffered from RA for 20 years. He agrees that this one is boring, even though he is now a grandfather. “When I was young, being compared to Grandma was a bit daunting. It can take the air of a person’s ego.
“You don’t look sick.”
“I a m sick, but you can’t see it, ”says Angela Lundberg, who is 42 and lives in Minneapolis. “I feel horrible. I have great pain, which affects my daily life, but I don’t look like it.
Courtnay remembers being on the New York subway on a crowded train. She needed a seat, but people ignored her because they couldn’t tell she was sick. Phillips says it happens to him everywhere he goes, too. “At one point I had to use one of those electric carts in the grocery store. I looked like I was lazy – an old man who rode in a cart because he was too lazy to walk. I heard the comments. “Hey, he can stand up. Why can’t he walk? These comments were so upsetting.
“You’re too young for that.
Lundberg was only 17 when she first started having symptoms of RA. She was diagnosed at 18. I’ve heard this so many times, and it’s wrong, she said. “I am already depressed and anxious, with severe pain as a youngster. I think it’s a particular challenge when you take it up when you’re young. Even babies can get RA. It’s not just for the elderly.
“Have you tried exercising?”
Cathy Kramer, who is 53 and lives in Naperville, IL, says it’s super shocking. “I could barely raise my cup of tea to my mouth when a dad in our playgroup gave a long speech about if I just wanted to practice – which I did when I could – my joints would move much easier. . Her comments seemed to highlight other things she was doing. “At that time, I was literally trying all,” she says.
“Do you need to take another nap?” You cannot be tired yet.
“People need to understand that the fatigue associated with RA can be just as bad, if not worse, than the pain,” says Courtnay. “My immune system is overdrive and constantly fighting against itself so it takes its toll and tires me out.” all time. I have to make time for myself each day to lie down and rest so that I can get through the day.
“Did you eliminate gluten … sugar … processed foods … meat … etc? It worked for my cousin.”
“Healthy eating can certainly help you feel better overall, but it’s do not will heal me, ”says Courtnay. “I’ve heard so many times that my PR was caused by something I did or didn’t do – and it’s an easy fix. This is not the case. I cannot cure myself on 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 are too young,” Lundberg says. “It puts me in a bad position because how am I supposed to respond to this?” It’s a way of invalidating myself and my condition, and I kind of feel disrespected.
“I sell … [essential oils, supplements, etc.] and knowing you have RA, i thought of you.
It’s a friendship breaker for Kramer, who cites several coffee dates that turned into sales pitches. “This one is burning me,” she said. “It’s hard to share your AR story. So when friends start selling a product and come back to you, using a vulnerability, you really feel used up. “
Lundberg says she receives product sales emails. “I’m taking care of my RA,” she says. “And I tried a lot of things. It’s stressful enough living with this disease and managing my medications and personal treatment plan with my doctor. … People who have no idea what to do are very irritating.
“I understand, I had a tennis elbow [or other body condition] and it really hurts.
Courtnay says this one really sets her on fire. “You can’t compare the disease to anything else,” she says. “You don’t have the same thing at all. We have the impression that they are not really listening. Often times you just want someone to listen to you. Don’t fight with a bunch of tips.
“The drugs will kill you.”
“There always seem to be people who have stories of people taking rheumatoid arthritis medication and then getting cancer,” Kramer says. “They say, ‘You could cure yourself because the drug companies are just trying to get your money back.’”
Or sometimes people will advise them to change their medications. “I explain the drug regimen I am using,” says Phillips. “Usually I have told this person several times before. So it’s this endless conversation.
“My pet has arthritis.”
This one can go way too far, says Phillips. “’You know my dog or my cat has arthritis in the hip.’ Or my worst of all was, “You know my hamster died of arthritis. Oh for heaven’s sake, did your hamster have arthritis? “Yes, he was in so much pain that he stopped using his wheel.…” Please don’t tell me your hamster died of arthritis. “
“When will you be healed?”
“It really bothers my wife,” says Phillips. “He is often asked, ‘When is he going to get better?’ His answer is always the same – never. In fact, just for fun she’ll say, ‘He has three chronic illnesses, he’s not getting better. ”” Phillips has had diabetes most of his life and most recently was diagnosed with ankylosing spondylitis, a type of arthritis that affects your spine.
What to say
Lundberg says thoughtful questions can make for a good conversation. “You might say, ‘I didn’t know kids could get arthritis.’ Or ask, “What is your condition?”
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