20 Things Not to Say to a Rheumatoid Arthritis Patient
A list of things not to say to a Rheumatoid Arthritis patient
Another kind of Rheumatoid Arthritis Treatment: how people treat RA… Imagine treating a broken arm with a band-aid. How would it be if a heart attack were treated like the flu? What about telling someone with breast cancer to just go on a diet? Crazy.
However, people often minimize Rheumatoid Arthritis symptoms. When they do this to folks living with Rheumatoid Arthritis, they act like RA is a not a big deal. That would really be fine – if only it were true.
Recently, I asked people with RA / RD to tell me the most inappropriate things people say to them. I thought it might be funny if we looked at them all here at once. Of course, it might be a learning opportunity besides.
I’ve compiled the list of the top answers sent to me directly from people living with Rheumatoid Disease.
Top list of things not to say to a Rheumatoid Arthritis patient
- Aren’t you feeling better yet?
- You’re not old enough to have arthritis.
- Oh, I know; me too.
- Exercise would really help you feel better.
- You don’t look swollen, sick, or ______
- Have you tried counseling? Maybe you’re depressed.
- Why do you walk so funny?
- No, it’s not heavy. Here, hold this.
- Have you tried the blue stuff?
- You’re feeling achy. / The aches & pains of arthritis.
- Why didn’t you try glucosamine (or Omega3 or gluten-free…) before you tried that medication?
- Just drink this juice. (Or eat blueberries…)
- Is that your handicapped parking tag?
- You just need to lose some weight. (Or gain weight!)
- I’m glad you’re better now.
- At least it’s not cancer. It’s not like it will kill you.
- I read about a woman who cured hers with…vitamin supplements, antibiotics…
- You just have a low tolerance to pain.
- My Grandmother had that.
- I used Tylenol arthritis and mine went away.
Did I miss your favorite thing not to say to a Rheumatoid Arthritis patient?
How about you? What do people say to you?
Don’t miss the sequel: 20 Replies to Things Not to Say to an RA Patient
Note: A special treat coming up on the blog: an interview with a young lady who will inspire you.
Recommended reading:
- One more thing not to say: 3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis
- Send someone this video! Working and Rheumatoid Arthritis
- Finding a good doctor: 21 Things to Know About Finding a New Rheumatologist
- I’m out to destroy the mythical RA! To Tell the Truth: Will the Real Rheumatoid Arthritis Please Stand Up?
When I talk to people who obviously know not about RA… I mostly just smile and say I have good days and bad days … It’s just too complicated to explain any further . Talking to most people about RA disease is like trying to tell someone what it’s like to have a baby. Until you’ve done it you cannot even begin to understand. Fortunately I have amazing support from my husband . Even though I hear the top 20 things plus many more like them all the time… I know that it is a misunderstood disease and people know not what they say . How refreshing it is though to bond with someone who has RA or an invisible disease that causes chronic pain and symptoms. That brings a real smile to my face .
A guy once told me that I got RA because my soul got sad and it affected my body, hence RA. He added that I should not be taking MTX because it will poison my body even more and make my soul even sadder. Instead, he recommended krill oil to cure my sadness.
I think I just glared at him for a good minute after that.
Someone told me yesterday that I shouldn’t be on prednisone because didn’t I know my face would swell up like a pumpkin? Really? Who says that to someone? I said to them “imagine how happy I am about that?” I can’t imagine what they would have said if they knew what methotrexate would do to me. Maybe I should just live with the pain and baseball mits my hands had become…..
I recently discovered your website. I tried telling a friend about your website & T-shirts & basically got #16. I didn’t know how to respond except to say I’m grateful I don’t have cancer or diabetes. Recently, my brother told me “there are people out there worse off than you”. That should be #21. I wish I had some snappy comebacks, but I only feel worse when people say things like that.
My favorite is “I thought you were feeling better because you haven’t been complaining”!!
My doctor said “a few days of discomfort is better than being in the hospital.” Well, actually in the hospital there’s a better chance that my pain would be managed and I wouldn’t be labeled as a drug seeker. AND those few days of discomfort as you describe them would knock anyone else down and put them in the hospital! I don’t go because I know better, and I’ve been through more!
I’ve heard a number of these. I’ve also been accused of faking my pain to get sympathy or to get out of working.
My coworker told me that it was just wear & tear and I needed to just grin & bear it, that it was no big deal. Another told me I needed to go all natural and stay away from medications & doctors.
omg do other people get this too ? I am so glad to see I am not alone one of my favorites we all have something wrong with us, or if you go to bed earlier you won’t be so tired, also I use a cane because my balance is very bad people ask do you really need that ? thanks for listening
Just found your site and I wanted to say thank you. After reading all the posts, I don’t feel so alone. This is a great support network.
I haven’t been officially diagnosed with RA, my appointment with a rheumatologist is 6 months away and GPs wont diagnose me. I’ve been having symptoms for 10 years, but I ignored them because they weren’t constant and I have a terrible fear of Doctors. 6 months ago though it became constant, it moved to all my joints and became disabling, so my fear of Doctors became inconsequential.
I’ve had pretty much all the comments said to me and their extremely frustrating. The worst I had was from an internal medicine practitioner who diagnosed me with a viral infection (because 3 months earlier I’d had chicken pox.) He told me that it was just a viral infection and I shouldn’t be in too much pain. I was so shocked. I wanted to cry. There were other comments he said that basically amounted to him telling me I’m a wuss. I’m still seeing this doctor ’cause I have no other choice. Thankfully as he started to realize I have RA he became more compassionate, but he’s still fairly ignorant about how difficult and painful RA is.
On a happy note my friends are super supportive, and my husband is an absolute Rockstar when it comes to understanding and helping me. My family needs to catch up though, I get daily advice about how eating blueberries, salmon, (insert food here)…will cure me.
Thanks again for all your work, and for all the posts, I can’t tell you how great it feels to have people who get it.
I have heard many of those comments, and nobody seems to get how serious it is and the impact it has on my life.
I’ve heard most all of these. Funny thing is, these comments always come from my doctors and parents. My only support is my husband.
I LOVED this! I was diagnosed with RA when I was 26 years old. About 12 years ago. My grandmother passed away shortly after my diagnosis. She had battled RA for many many years. She was of the RA generation where the only treatment was Methotrexate and plastic joint replacement. Needless to say, after years of treatment with methotrexate she acquired lymphoma. She then underwent chemo and survived her cancer. However, the Chemo left her heart weakened. She suffered a heart attack and shortly thereafter a stroke. Within two years she had passed away from debility related complications. All in the span of two years my grandmother had gone from an active woman who daily “flipped her finger at RA” to dying. I was, and have been since, adamant that I will not have treatment with Biologics. I am an educated woman, a nurse. I know what I might be potentially doing to my body. However, I have young kids at home. I am just plain and simple unwilling to take the risk. Is part of my decision emotional? Absolutely. Am I going to pay for it at some point? Most definitely. But it is my decision to make. I have lots of acquaintances and friends that are medical and have RA. I am plum tired of validating my choices. I don’t complain with one breath and refuse treatment with the other. I just deal with it silently because I know it’s my cross to bear. Just please stop preaching at me about how great your drug is. I know some of them are great. I also know some of them are terrible. I will take treatment with them someday. Probably sooner versus later. Just let me come to it in my own time. If I wanna shoot shark piss up my nose until than, hey-it’s my nose!!
Here is one of my OTHER personal favorites. I have Reynauds as well as RA. This causes my hands to be some freakish colors at times and also causes busted blood vessel’s in my hands that can make purpleish kind of discolorations/ bruises. People are CONSTANTLY asking me, “Oh My Gosh, what’s wrong with your hands?? I, of course, explain to them that I have RA and I get multiple different answers **see the list above LOL** My favorite I think is “Oh bless your little heart.” The worst to me is that if someone was in the grocery store line, at the post office, or at the gas pump(yep, it’s happened) with a bald head from cancer treatment or bent over at the waist from kyphosis or osteoporosis people WOULD NOT DARE walk up to them and ask “Oh my goodness. What kind of cancer do you have?” or “Holy moly, what makes your back bend like that?” But because its different and maybe they’ve never seen it before they think it gives them carte blanch to ask whatever they want….you’re killing me Smalls…you’re really killing me.
I’m currently involved with a beautiful strong independent woman who has RA. I just wanted to thank you for all the information that you post. It is helping me greatly in understanding what she goes through on a daily basis. Thank you from a guy who is madly in love with a RA girl 🙂
I had a highly educated retired school administrator tell me he would rather have rheumatoid
arthritis anyday rather than osteo ayrthritis.I have had rheumatoid arthritis for 22 years I wish i could flip a switch and give him my pain for 1 day
I have had JRA since I was two. My left knee became so effected that the kneecap became instable. I get surgery on it in July. But I was thinking and realized that that only solves one problem. It doesn’t solve the problem that I will have JRA the rest of my life and no one can fix it. It solves one of two major problems in my life. I often don’t show my pain but I hate when people ask stupid questions like during P.E. classes, someone asks,”Why are you sitting out?” It annoys me. Anyone who says they know my pain I laugh in response because I know they don’t.
These are the most insensitive comments and suggestions I’ve received. 1. Have you tried meditation? 2. You need to do this exercise. 3. Day 1 of being down: So…are you going to be in bed all week? 4. Just woke up, in tears, can’t get out of bed: are you fixing dinner tonight? 5. You use your illness to manipulate. 6. Oh…that again. 7. Doctor, is it possible that my RA Meds could be causing these reoccurring sinus, bronchial and bladder infections? Doctor (not rheumatologist): you look fine. Me: but doesn’t my medication suppress my immune system? Doctor chuckles: I mean…you look fine…nooo. 8. Look at her, she’s drunk…she can’t even walk straight. 9. You need to get in a tub of water with onion slices and rubbing alcohol and soak for an hour each day. My thought: The last time I soaked in a tub I was stuck there for hours as it was too painful to lift myself out….I had to keep draining water as it cooled and refilling with warm water until my neighbor to came home so I could pound on the bathroom wall for help.
Hello! Thank you for this opportunity to vent. Here are the top insensitive comments or suggestions I have received: 1. Have you considered meditation? 2. You need to do this exercise. 3. Oh…that again! 4. You use your illness to manipulate. 5. Look at her…she’s drunk…she can’t even walk straight. 6. You need to soak in a tub with two sliced onions and rubbing alcohol for one hour each day. 7. Doctor, do you think my RA Meds could be responsible for the reoccurring bronchial, sinus, and bladder infections? Doctor (primary): but you look fine…just look at you…nooo.
I just found this website and have learned a great deal about RA. I am currently in a relationship with a man who has RA. He has invited me to his home a few times, we’ve bee seeing each other for a little over a month now. I would like to spend more time with him. He sort of keeps me at a distance especially when he doesn’t feel well. I tried to explain to him I would like to be there to help him with whatever he needs, but he seems so isolated. I’ve been researching all I can about RA. I even asked him if he would like me to go to his Dr appts with him. He told me he hasn’t been in a relationship in a long time. I don’t care that he has RA, I lke him. RA doesn’t define who he is. He’s a very sweet, kind, gentle, and funny man. I want a stronger relationship. Does anyone out there have any suggestions for me? I think I am falling in love with him.
You’re so negative! Meaning I am so “negative” because I am in pain. L
As I sit here on my heating pad pondering about trauma and stress as a trigger, I remember Like yesterday; mom was ill and I was driving 3 hrs. every day to be with her. After she passed and my son healed from mono I was home alone and that’s when RA introduced its ugly self
I remember feeling grateful that it hit me after the trauma and overwhelmingly sad for the young who also are inflicted.
Over the years I’ve had a lot of stress trickling on me from traumatic incidents…horrible trauma events and really had only one friend say to me “ I rather have my disease than yours. She had stage 4 Colin!
And as I pump medicine in me I am hopeful that the trauma of her loss is kinder….