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?
21.) Can’t you get cured with bee stings?
Something that got my blood boiling recently, a friend on facebook posted that a different friend has RA and is looking for natural remedies. Although these responses come from nice and decent people that mean well, these are some of the responses:
“Anything that will relieve inflammation…Often it may be diet.”
“I have a DVD to give them about reversing it.”
“chiropractors are amazing”
“Fish oil and green tea….I’ve started using both for my arthritis”
Hi, I was diagnosed R.A and Sjgrons Syndrome about 3yrs ago but suffered with it undiagnosed for six yrs before that. I just had a little story of how family and friends do not understand how very hard it is to live with this disease. One afternoon my mother called and left a message on my phone saying that it was very important that I call her back as soon as possibe because she needed to discuss something about my sister. I was very concerned when i got the message because i knew my sister was having some problems similiar to mine with achy joints and she just was not feeling good lately. I called my mother back and she told me that my sister had seen the dr. and had gotten a diagnosis on what was going on, i said what does she have mom? My mom began ranting on how bad she had it and i was getting more and more concerned and asked her if she had what i had and my mom said no worse, what i said? My mom said she has fibromyalga. My first reaction was i felt like i had been slapped in the face . Since when is Fibromyalga worse than R.A? Dont get me wrong im not saying i dont feel bad for my sister and anyone else who has been diagnosed with fibromyalga including myself. This is just one example how people just do not know enough about Rhuematoid Athritis.
Dear Doris,
That is such a typical story! Public awareness & education are so needed. I wonder whether your mom might be willing to read some posts here on the blog to help her learn about RA?
And by the way, fibromyalgia syndrome (FMS) diagnoses often eventually turn out to be RA. There are a couple of posts here on FMS & it might be something your sister should watch since the two of you share some genes. I hope your sister doesn’t get RA or turn out to have RA, but she should probably watch for it. Wonder what your mom would say then!?
You are so right Kelly that people just do not know enough about this disease. I have often suggested that they go online and read what R.A is exactly because sometimes I really do get tired of trying to educate people over and over about this disease. I am definetly praying for my sister that she will not end up getting R.A because it is a very serious and scary disease to have. Thanks for all the great work you do on this website because it is nice to feel like I am not alone. God Bless!! Doris
Dumbest comment I’ve ever got..it can’t be that bad if you can still work!
I live in California so have the benefit of being able to access all kinds of “alternative” treatments. The down side is the occasional ignorance and outright arrogance of new age/holistic practitioners. The most annoying is “You just need to work on your anger. RA is caused by anger turned inward.” My fantasy response, if I didn’t have plastic knuckles, is to punch them in the face and say “Wow, I just expressed it outwardly. Thank you, I feel much better.”
I have not seen this one yet but I get asked this CONSTANTLY!!!! “Why are you always so tired? You get more sleep than I do.” SERIOUSLY!? And it is more than true– nobody will understand until they have it. My sister says “Oh yeah, me too” alot, but she does not have it. She may have pain in a couple of joints from overuse, but it doesn’t measure up to the frustration of not being able to open a can, jar, door, or hold your daughter. I was diagnosed at 18 years old but had been having the pain in my hip since I was 14. Who knows how long I’ve had this? I am now 20.
I was working full time, involved in several charities, 3 day a week taekwondo yellow belt with green stripe, traveling, 18-19 hour days. My hands started bothering, I thought I was doing too many arts and crafters. Then one week I started having pain everywhere and quickly became unable to brush my own hair or dress my self. I went to Mayo -waste of my time, money, and hope. My RA dr gave me NSAIDs and methotrexate. I took the pills for one month and then threw it away. Right after I got my prescription, a friend with MS mentioned reading about someone with a food allergy that got better. I cut back milk (casein) because I have had stomach problems for the last 8 years and milk was the worst. To my surprise, I got a little better, I cut it out completely and after a few weeks, I got A LOT better. I stay away from artificial sweeteners etc and try not to get stressed. After a year, I am almost back to normal. I’m still full time working, driving my manual car, getting scuba certified this month and hoping to rejoin taekwondo in the fall after I get some of my muscle back. Unless I accidentally eat some casein (it’s in EVERYTHING), then I’d say I’m doing pretty well. I figure I got lucky, but I’m hoping that others will read this and give it a try, there could be someone else out there that could get better too, RA can’t be the same for everyone. Oh, and wine helps too, a glass in the evening is fantastic.
My boss likes to say “we’re all tired, it’s no excuse to stay home” . . . this was after 3 days with less than 2 total hours of sleep.
Just ignore the pain and move anyway
move away from where? how nice is that?
Wish I could move away from the pain!
I had
at least it won’t kill you…
I was diagnosed yesterday and I’ve heard many of the same comments from well-meaning friends and family. The number one comment I’m hearing is that I’m “lucky.” As in, “You are so lucky that it isn’t lupus.” Seriously? The doctor wondered if I had lupus but it turns out I have RA. I’m not sure getting either one of the diseases counts as lucky. Or, “You’re lucky it isn’t a severe form of RA.” Oh, really? Define severe because I consider a chemo drug to be severe. I’m not feeling very lucky right now so it is hard to hear other people say that I am. I think lucky would be not having RA but what do I know?
that’s right Michelle – lucky would be no RA.
I hope you’ll look thru the RA Map on the menu if you haven’t yet. RA diagnosis can be overwhelming – how impressive that you are already here! Please let us know if we can help – ask questions & read – the 2 best weapons you’ll have right now – and your dmard.
There’s actually a post here about “lucky it’s not lupus” – but you can guess how I feel about that – the reason RA patients get that response? Becuase lupus (SLE) has had organizations & lots of money & support & Public Service Announcements & The Ad Council etc to help everyone think of it as a serious disease (RA has had none of that) – the mortality rate for RA is jsut as bad. RA is not less serious and is unfortunately more crippling and may be less responsive to current treatments from what I’ve heard. Comparing is not kind or polite & I wish it didn’t happen.
When I told my sister the day I was diagnosed she interrupted me and said. ‘OH! lots of people have that, you should see all the old people I’m around at work that have it.” She’s a not to sensitive person anyway and I dreaded telling her at all due to knowing ahead of time I’d get some dismissive response. When I replied that actually it’s more rare than OA which I also have and isn’t the same thing she scoffed again.
I don’t think people without this get it at all. The ads on t.v. don’t help because they make it look like we are all skipping through daisies with no issues. God forbid I say anything about the fatigue.
The kicker here? She a social worker for a hospice! In her private life though she’s totally insensitive to those around her. So just because someone is in the medical field in some capacity doesn’t mean in any measure they understand or have empathy for another persons pain.
I find generally in society many are clueless about what RA is, what it does and what it means to live with it.
Last weekend I met a very annoying lady at a dinner party who said, “You’re too young and pretty to have RA!” I said RA is an equal opportunity disease!
My husband has had the worst time trying to understand. Thanks to his mom having OA in her knee, they both hound me all the time to exercise.
Everytime my husband see me researching or reading about RA he tells me to “Get a life” it’s so frustrating. I tell him I’m trying to get a life by learning how to feel better.
My kids are the most understanding and helpful. They yell at me when I try to reach up to get something out of the cupboard or try to lift something. They are great about coming to my aid. I couldn’t get thru my day without them. 🙂
The worst thing someone ever said to me was…I know exactly how you feel, I have Arthritis in my pinky! I have severe pain in almost every joint in my body but you nailed it with the pinky pain.
This isn’t a “worst”, but rather a best. My wife was just diagnosed a week ago and at church on Sunday morning our pastor came up to her, gave her a hug, and said, “I’m so sorry.” She said it was the nicest thing that anyone has said to her so far.
Wonderful example, Eric. It doesn’t take much. Thanks.
I got a note early on that said “I’m sorry.” and I could tell she knew what RA was. It meant so much.
Kelly my dearest, I read your blog today and am so saddened that people are so mean… Mean maybe a pretty harsh word, but I think STUPID is worse. Honestly, people don’t care when they don’t understand. My kids don’t get it. and they are adults now. My husband says he gets it but I am not sure. It is almost as if we don’t talk about it then it is not real. Kelly you know I swim, but there are days I drag myself out of bed to get to the pool. I push and push, because I am so afraid of waking up and not be able to move….but I suffer for days when I push. So what is good about exercising if you suffer from it days later?? YOu have to do what is best for you and not what others can or can’t do should matter. That is what I have learned from you and your blog. You are right, strive for best you can be in one day. Tomorrow may be harder…..
Love you Miss Kelly
And so do many others with RA
I bought my first RA Sweatshirt. I wear it hoping others will ask me about it. And if they ask I tell them how different it is for those with arthritis (OA) I am not disputing the OA hurts, but it is different. NOne of us want crippling fingers, toes and backs. But it seems that’s the only way the nay sayers get what it can do to you?
So Kelly, I wish you were in Illinois, my rhuemy is the best.
Steph
I have had two “dumb” things said to me recently that have both stung and stuck. One was from a State Health Plan nurse. She informed me that my weight had caused my R.A. I told her that my rheumatologist has never mentioned my weight. She said that didn’t matter. My weight had definitely CAUSED the disease. Can you spell ignorant????
Secondly, I had someone tell me that “everyone” in my age group (54) has arthritis and that it didn’t matter how many joints that I have swollen, I just need to “suck it up” and take some Advil. Hum, shall we trade elbows for a day that hurt so bad that I am in tears????? Once again, can you spell ignorant?????
As I told my rheumatologist. I have been very grateful for a diagnosis. I had hurt for a long time and what a needed was a “plan of action”. I am now on medication. Somedays it helps more than others. Prayer helps everyday. Thank you for your hard work and listening ear.
Me: Good morning Mom, how are you
Mom: Grunt
Me: I feel like I have been hit by a truck.
Mom: You feel like that every morning, what makes today any different?
ARRRGGGGGG!!!!
The one I hear a lot is “Oh I have some of that in my knee.” Or “You should try some of that______. (insert inane product name here.) It cured all my aches and pains.” Well bully for you. The one that always stumps me is “So what now?” What do you mean what now?
Like any one has that answer.
What happens now is I take more pills, Get poked with more needles, and go to more appointments…. and take more naps. FOR. THE. REST. OF. MY. LIFE. Just so you can feel better. I have become very private. I barley want to even talk about it all when asked because I get so annoyed. No one wants to listen. Its like asking me about my pain is a gateway into them diving into a story about themselves. I hate to think that way but its soooo true. I only give one word answers now. Because I refuse to subject myself to this any longer. The problem is when I was diagnosed I talked about it a lot and gave updates frequently so every one I see knows but doesn’t want to devote to much attention span to it. I can understand to a point. People want to hear about Babies and Birthdays, Weddings and Graduations, Cupcakes and Glitter. I get it! My diagnosis is very dismal and bleak but give me a break. The one I hear the most that absolutely makes me want to just violently shake people is. “Well at least you can adopt.” Oh yes thank you for that. Because RA affects my brain noodle to and I never thunk a’ that befer. Hayuck. sigh…. being angry makes me tired. Thanks for letting me rant.
I hope it helps to let it out, Nanette. You have a funny way with words – but I wish more friends could handle the truth about RA along with the glitter stuff. Life is full of both kinds of news and friendship is only good when we can share both.
Becoming private about it is what most of us do. It is a double edged sword because no body gets it & sometimes it seems they never will – but I am the same way – as a survival mechanism.
I’m so glad I found this blog! I have heard almost all of the statements listed. What I don’t say is, “Do you think I WANT to feel like this? Don’t you think I would eat/drink/take the pill or potion that would make it all go away?” After 18 years of this I am sure the next person will hear my thoughts spoken!
Thanks for blogging.
That’s all funny! I get #17 all the time or I get told “Oh, I know so and so that has RA, but they have it WAY worse than you”. Maybe that’s because on my worst days I don’t even leave my house!
Or when people shake my husband hand and I see my husband cringe because a man measures respect from the way men shake hands and he now fails in this because his RA causes him not to be able to grip. Or when men have to be men and squeeze a handshake and it’s hurt my husband hand. I’ve changes the way I shake hands (even though I am a girl) because I don’t know what the person has when I shake… make sense?
You look great why are you in bed. Go for a walk. I would love to be able to go for a walk. I have the same thing and they show me their fingers they have osteo. I just agree with them now because i get tired of trying to explain r/a is different
Why are you tired all the time.
If you gave up all them tablets your taking you would be better off. And the list goes on and on.
I get these all the time. I was 21 at onset/diagnosis(about 2 years ago), so the most common ones I hear are “you’re not old enough” or “my grandma had that” Way to be offensive.
I also have people hound me about their magical juice. Sorry folks, if it were only that easy I wouldn’t be on all these nasty meds.
What really bothers me is when someone tells me I have a low tolerance for pain and I show up to work every day, regardless if I can walk or not.
“I’m sorry, I can’t drink alcohol”
“YOU CAN’T DRINK?!?! What, recovering alcoholic?”
“No, I’m on medication for RA.”
“That’s too bad, I’d be so bummed if I couldn’t drink…”
(“I’d rather not have RA too, but it’s not because I can’t drink…)
This is so very true for the ignorance of people. Not only living with this also Fibromyalgia. They say all these stupid hurtful things and more. Oh because I combed my hair and got dressed today you think I am all better?? AWFUL.These are devastating diseases that are irreversible people. EDUCATE yourself so you do not isolate that person 😀
Here’s the best. I go for my first visit with my rheumatologist. My mom came with me. The rheumatologist looks at my mom and thinks she’s the one having problems! When she corrects him, he looks at me and tells me that I’m too young for RA. (I was 22)
How about – Really?? Where??
I love this post. Have you ever thought of writing a post with how to respond to these comments? I don’t just mean the snarky replies we want to say, but reasonable answers that will hopefully shut people up?
Hi Erin, I do believe there are dozens of posts here meant to do that. There is a Category called “For Non-RA’ers” https://www.rawarrior.com/category/information-to-understand-rheumatoid-arthritis/
However, I’ll see what I can do to create something easily used by us when we are “victims” of such nonsense.
Ive decided…..the next person that says one of these 20, is getting slapped across the face.
Iv had all sorts of things said to me, and its frustrating as I never seem to be able to tell people how awful the pain is without sounding like I am constantly moaning, I take leflunomide plus anti Inflamitories and pain Killers and sometimes I am so tired I cannot function physicaly, the joints on my hands are enlarged and my little toes are starting to fold under my other toes, my left shoulder is in constant pain infact I cant remember it ever being mormal my lower and upper back are causing me a huge amount of pain which gives me headaces, these are all the reasons I carry on to the outside world that Im ok because unless you have the debilitating disease nobody will understand Iv been told “just keep taking the pills” and “you look ok” and “your to young to have arthritis” etc, etc, thankyou for letting me have a wee arthritis rant.
Thanks for helping me to not feel so alone. I was having a “good” day until a loved one came in and more or less said that if I would only have a positive attitude and have faith that I could be cured. Translation: They think I am negative and dwell too much on the pain. Translation: I don’t believe in God or that my faith isn’t strong enough. Made me feel like a failure, that I must “enjoy” being sick. Maybe I want attention or I am just lazy. I understand why we become private. If we don’t, we subject ourselves to judgement. Along with the RA, I have ulcerative colitis. I was sympathizing with a relative about their stomach ulcer and was informed that there was no way that I could understand their pain. Hello! I have been in the hospital for weeks at a time on IV nutrition with nothing by mouth to eat because of bleeding ulcers. I didn’t want to compare and didn’t even bring up my experiences. Just wanted to offer sympathy. I don’t want sympathy or pity. I just don’t want to be judged. Understanding is what I need. Just a gentle hug and an I’m sorry you aren’t feeling well today would do. Hang in there everyone. At least we aren’t alone. Prayers for all the warriors.
Thank You for this post Becky. I can so relate to the “you’d be fine if you were more positive” insult. So hurtful and ignorant. It’s my positive attitude and strength that keep me going despite this horrible disease (I’ve had it for 32 yrs now) … and then someone blames me for it!…ah! As if I’m weak and mentally flawed. ARGH! Prayers to you too!
“Oh no you don’t have RA in your knees. It is probably OA, you’re just fat. Your knees can’t take all that weight.” -from the nurse administering my Remicade Infusion
Yes it still makes me angry. I am actually considering changing offices at this point. Where does one find a good, NON-sexist, NON-fat-hater Rheumatologist office?
That infusion nurse might need some job training. Or a different job! Please let your Rheumatologist know. If you don’t tell them,how else would they ever know?
You can’t be in pain now – said when I went swimming and gentle ‘exercising’ in the warm water!
I appreciate the time and effort for this blog. One concerning comment I won’t forget is from my cousin’s new husband saying “Yea, my ex wife had ‘that’ disease”.
My husband had the nerve to come home one night to tell me that he had talked some one, that happened to know some one, who had RA and they got acupuncture and it all went away at and it never came back… Really, is that all it took. I better get online now to spread the word that your buddies friend found the cure, and we all just missed out on it. You would think out of any one, my spouse would at least try to get it.
yep.
It makes me crazy when people say “You’ll feel better when the weather warms up”.
#17 and #19 are the most common ones i hear. my friends and family are kind and understanding but they still don’t always “get it”.
my biggest problem right now is NOT wanting to shake hands – i have developed a self-protecting handshake that keeps folks from crushing my hand and then i don’t have to “explain” why i don’t want to shake their hand. (when i do to perfect strangers even, they always have one of the lines from your above list – i’d rather not bring it up) i am concerned about being on an immune suppressant now where i shouldn’t be exposed to so many germs unneccessarily! i thought maybe a mannequin hand on a pole might be the solution!
Oh, it can’t be that bad.
grr
Well I guess I am one of those that believe a healthier diet can’t hurt, even my RA doc believes it. Also I believe that the right vitamins and supplement can help. I’ve dealt with this RA since my early 20’s and I’d have to say my healthy is when I watched my weight, what I ate and my vitamins and supplements and exercise while in my 40’s. Then I got married in my late 40’s, my whole diet change, married a southern guy. I didn’t exercise like I was, I gained weight, the pain start up, the joints started getting stiff, had to go on steroids, weight got worse, now I am working on changing everything back to what I was doing. Except the hubby, think I will keep him, lol/ I’d never tell anyone not to eat healthier, or not to keep moving, or not to take vitamin and supplements. Yes it can all help… Never say never and never give up or stop trying…
3, 4, 13, 14, 16 & best of all 19!!!
One thing I hate to hear is, put your big girl panties on, or suck it up and be big a girl. Or go get a job, there are people out there worse off then you. I have good days and bad days. I will be glad to finally get back with a RA doc next month. I am going to ask him to put me on minocycline or doxycycline, I have heard really good results with this antibiotics, that it works really good fighting the inflammation.
My favorite is being told “you look fine to me”. They don’t see me at home not doing much so that I can go somewhere. Or when I get home and everything from my toes on up hurts.
My PCP used to tell me the pains in my chest were from gaining weight from quitting smoking. She would not check me for anything. Good thing I had the sense enough to keep going to different doctors to find out more when the pain kept spreading to other areas. But my favorite is, “I want the old Barb back.” I keep telling them she ain’t coming back but nobody seems to get it.
You’re right Barb. Where is the compassion in that? I wish it could be more of, “Gee, I’m sorry this happened. How can I help?”
while standing in a check out line in the grocery, a man behind me said: “Oh it’s not an auto immune disease, it’s nutritional.” (BTW he is a vitamin pusher)
Some days I am in so much pain and so fatigued, I must rest. I don’t ask anyone to do anything for me, I just need to rest. I am told I should drink coffee to get going. Then once I get moving my joints will get lubricated and I will be fine. If it was that easy don’t they think I would do it rather than sit around in pain…..duh
My two personal favourites:
“You don’t LOOK ill”, and “Someone is always worst off than you”
Put me down for #11. I admit it.
MY LIFE! Urgg. I am only eighteen and people really don’t understand how serious it is. I like the cancer one a lot because I always use it to help explain RA and they look at me like an idiot and think that I am exaggerating. The juice/supplement/exercise ones are thrown at me a lot too.