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?
Kelly, you’ll be hearing a lot from Kenya! I feel like I have so many new friends out there who don’t know me but cerainly know how I feel. I’ve just read about learning to become private. I think I have learnt to become private with my boyfriend. He sems to not want to face up to or hear about my RA. I feel that he pushes me away whenever I mention the RA or whenever I get terrible flares:-( So now I’m learning to “become private”…and not talk about it with him.
Dear Daisy, I know what you mean. But I will hope with you that he will eventually learn more about this RA and how it affects you. I hope to have a guest posting soon on this topic – written by the man. So check back with me on that. 😉
I am among the “too young, too athletic, and too healthy” group, having had to deal with the process of diagnosis since I was 24. I have my own list of things I hate to hear. I find that people tend to say them at the worst possible times, like when you are doing everything you can to treat RA and still experiencing a painful flare up. I work in a job where I interact with the public on a daily basis and am shocked at what people feel is okay to say. Walking with a slight limp on a good day last Summer I had a gentleman suggest, “You should just get a wheelchair so you don’t walk like a cripple.” I honestly was gobsmacked and could only turn and walk away.
Fortunately, I have an amazing and supportive man in my life to come home to. He just accepts me on my good and bad days, treats me like I am normal, does anything to help when I ask, and never has said any of the top 20. When we met we both had a slight limp, and I think I fell in love with him when he said he was relieved because we would make a good pair. These people are out there too. Have faith, have hope, and embrace the small moments that make life beautiful. Thank-you for your website!! It is one of the best I have found.
Thank you, Megg. It is wonderful to hear that encouraging story. …Not the bozo from last summer, but your spouse. 😉
Kelly,
What an awesome website…I can’t wait to start from the beginning and read all your blogs. So far–I am just so impressed with all the topics you have hit. The top 20 things people say…been there heard them. But I have to admit the worst one I ever had, was from my Primary Physician who when I made a comment my Rheumatologist wanted me to go on Methotrexate, but I was wanting to conceive and told her I needed time to think about it. She proceeded to tell me how I was “being extremely selfish to bring a child(ren) into the world when they would never have a mom who could be half the mom someone without RA could be!” I cried and left and never saw her again!!!
Unfortunately, I never was able to have children, but my husband was never one to think we shouldn’t try–he has been awesome! I married him, because he was so supportive about my illness (I have had a few other ones along with RA) — and I kissed a lot of frogs before I met him. There ARE wonderful men out there who can be great supportive caregivers!!!! I’m so glad I never settled for a frog!
Thanks for your info!
Nancy
Wow! Thanks, Nancy. Welcome aboard.
That is definitely the worst thing I’ve heard from a doc – outrageous. How sad that I can easily believe you… I’m so glad you have someone really special. :heart:
I think this is hilarious because they are sooooo true! I’m sure I’ve heard all of them already!!!
Yeah, laughter is our only “revenge.” LOL. :O
It just shows me that people in general either don’t really want to know, or don’t REALLY care. Sooooo when they ask…I just tell them…OH…about the same…you would be surprised at how many will take that for the answer…..anything in depth will go right over their head(s). They either listen but don’t hear, OR hear but don’t listen…take your pick! WE (patients) muddle along, out there by ourselves. We we do find someone (anyone) that seems to give a hoot-its like manna from heaven…goodness here is someone who is REALLY interested…Rheumy’s are not immune to this action/reaction either!
No, Joe, I wouldn’t be surprised… :-/ Funny how “oh about the same” is just fine w/ them even when “the same” is STILL really BAD…
are you ever dead on about your comments! l have had people interupt me in mid sentence to change the subject from rheumatoid.l could maybe understand if l was going on for even 30 minutes,but to not even allow 2 minutes!? l come from a huge family of 12 siblings,as well as my loving supportive hubby has 10 siblings.we could live 5000 miles away and it would make no difference,because we live within 30 minutes from all of them and we are as good as alone! just know that my husband and l support and care for all who suffer from RA,and any other affliction.sadly illness brings out your real friends and family.we rely on God and eachother.lm so glad we found this site!
I just have to tell you how I had to not & say “that’s right” out loud reading your comments Trudii. :heart:
Getting old is hell ay I get this a lot three years ago I was 57 and riding my bicycle 2miles each way to work. a month later I could not pick something off the floor.Age had nothing to do with it.I still feel fortunate compared to a lot of people.
No, youre right, age has nothing to do w/ it. I have friends who are 80 who move better than I can in my 40’s…
I HATE RA! 🙁 Today is one of those days when I just want to curl up and die. I’m in pain all the time, I’m EXHAUSTED, I’m constantly nauseated by methotraxate, I’ve put on weight because of the steroids, I’m having low self esteem, I’m lonely sad and TIRED! Did I mention that I HATE RA! I miss my pre-RA life; I almost don’t remember what that was like now:-( tears…
I hear you Daisy. I agree.
i have a friend with ra,just diagnosed,i have a serious illness ms and i hate it when people say u will be ok cause some times i am others im bloody not,same goes for people wih ra
I agree Sandra. It’s very unhelpful to say any “AT least it’s not _____!”
I think this site has saved my life. I really wass starting to think that no one was going through what I am. The worst comments for me are from my daughter, See a psychiatrist, if it wasnt in your head the doctors could help you. You always hurt when i need something. You like being sick or you would find a way to fix it.
Tanya, those are really rotten. I hope it helps a little to know you aren’t alone. :heart:
ps: maybe she could read a page or 2 from this site? there is an email link below each article.
RA is only one of my Dx’s, but the greatest one was:
“So, how’s your lupus today?”
#2 is probably “Quit saying you can’t, you can, you just need to have a positive attitude”
Haha. “so hows your lupus today” LOL :O
Funny you should mention #2 Mel. That one’s been bugging me – I’m working about a post on “saying I can’t” & what it really means w/ RA. Do you think people *hear* “I don’t want to”?
Just excersize more and loose weight
yes. Works perfectly, right? :-/
While traveling with a friend, I pulled into a handicapped parking spot. As I turned in she said, “oh let’s park over THERE, and save this spot for someone who actually needs it.”
That’s incredible. I want to hear what you said to her!
one i have gotten before from teachers at my school (and it REALLY makes me mad) is “well there are kids with cancer and other terminal illnesses that are sicker than you and they still get ALL of their work done and turned in on time”. how much more RUDE can you get?
Dear Lauren, Thank you for sharing that so others can learn from it. I wish I could give you an arm around the shoulder. I am just speechless that is so evil.
HI Kelly,
I said, “I don’t think you realize that pain, fatigue and weakness of a chronic nature are disabling”. She pulled in to the Handicapped spot. And Kelly, I have to tell you that somewhere on your site I read about your trip to Wal*Mart. You wrote about waning energy as you progressed through the store, sitting on the displays, etc. I laughed hysterically because I can SO relate. I only found your site about 6 weeks ago. It is now on my daily list of things to read. THANK YOU so much!
Thanks for the reply Phyllis. I hope she will learn more as time goes. Don’t know if it would be too much to email her this post about compassion with chronic pain.I’m glad you could laugh with me about this mess – sometimes that’s our best weapon. 🙂
I can’t tell you how many times these statements have been said to me. People think RA is just “arthritis” and that you “must be getting old”. RA is an autoimmune disease that attacks your joints and your organs. It is extrememly painful and very draining physically and mentally. If you know of someone with RA; instead… of saying some of these statements, just simply say, “Is there anything I can do to help?”.
Yes…I’ve been advised to “eat cherries” or “drink cherry juice”. She had read an article on the internet that cherry juice helped RA. She WAS one of those friends who researched “for me”. I really think she researched in order to prove to me that I didn’t have RA, or if I did, there were sooooo many worse things I could have! Ex-friend. And by the way, on the cancer discussion, I developed skin cancer after taking several RA drugs (they didn’t help), and ended up having surgery on my face to remove it. I am no very gun shy about the RA drugs. I haven’t found one that works yet, but have had MANY side effects. Just sayin’…
Have heard all of these—and more.
My “favorite” is: you have a disable parking plate? Funny; you don’t look sick”. That took a bit of restraint…..
Thank you for posting this—it helps us help our friends and family get a damned clue, and it helps us focus on treating ourselves, not kow-tow-ing to the ignorance that is spread daily.
I pray that those who are uninformed get a little does of learning- and to that end, I fired off an email to all of my friends and family, re: the RA process; the meds used to treat it; the risk/benefit calculus, etc. I used kind language and was ASTOUNDED at the replies I received. Clearly, people had looked some things up on Google/library books, etc. I think (for me, at least), it was putting my “pride” down, and telling people that this was the “real thing”, and we could discuss politics, religion, etc., later. I now have four friends flying in to help my husband and me for a while. Honesty- bright, glaring honesty, is the key. I’m no less important because I have RA. Life, however, IS more important. Big distinction!
This is an absolutly great list! I can relate to many of these. I have developed arthritis over the past 5 months but have been dealing with multiple sclerosis since ’94. Many of these comments are applicable to that as well.
Thanks so much for the good laugh!!! I especially like #8.
John
Thanks John. Aha, then it is a list for other invisible illnesses also. Good to know.
When someone asks what’s wrong with my hands I no longer say I have RA. Personally I don’t want to listen to their aches and pains and I’m sure they don’t want to hear about mine. So instead I smile and say: “I’m an ex bull rider”. I’m from Texas so it works. lol
Great one!
Well. I just got back from a walk that I was told I needed to take by my GP. He’s been my doc since 1993. He told me last time I went in that I was on a “death spiral”. So I decided to try to walk. I walked about 4 blocks tonight, and the pain is intense. I thought of this page as I sat here crying from the physical and mental pain. Actually the mental part is anguish. I remember who I used to be and how strong I was before RAID (my new name for RA is Rheumatoid Auto Immune Disease since Arthritis has very little to do with it), and think of all the loss in my life since my diagnosis 3 years ago. My job, the man I thought I would spend the rest of my life with, my self respect, my outlook on life etc…and I thought, of all people, my GP would understand. So “take a walk” is listed (for me) among the things not to say to an RAID patient. God bless you all.
Good points, Raini. I think you need to gauge how much of what makes you feel better & worse. You know more about that than he does.
“Well, be glad you don’t have osteoarthritis, because at least they can treat RA.” ~My Co-Irker, just yesterday.
Omg.
How did you keep your cool with that one Dawn??? (love the co-irker!!!) 2 funny. But does this co-irker not realize that osteo can go hand in hand with RA?? I have both as well. What a boob.
😀 LOL
OMG Yes to #4
When I had to use a cane someyrs ago, a good friend said to me “You know that’s your choice rigth!?” Here theory was excercise & yoga would help me. So I chose to use a cane. Really infuriated me.
:dog: @Michelle
oh come on you can do it. and anyway its not far to walk. grrr!!
agree: Grr. :no:
This is a response from my brother, “Is it the crippling kind? I got it too”. NO HE DOESN’T! OA can destroy joints but it does not cause severe fatigue, attack your organs, shorten your life expectancy and destroy what RA does. Grrrrrr!!!!!
yep. Grr. 😕
The one I hate is “You need to fast and use a good colonic for 2 weeks, that’ll cure anything!” I wanted to bite back with a really cutting remark, but was too tired to respond. With every encounter in the list over the past couple of years, I’ve been trying to come up with good responses. However, when it comes to the encounters, my memory gives out and I’m left tongue tied, but seething.
Ick. That’s spit out the coffee funny, Tanja. No one ever used that one on me yet. I never have a good comeback either. Maybe we should have a comback idea contest. 😉
I like the idea of a comeback contest as a Warrior must always be prepared and it would be nice to have at least 1 good zinger to respond with. Most times, after these encounters, I try to focus on the fact that we have bigger fish to fry than the insensitive comments of others.
Here is my 1st submission to the contest: “Break every bone in your body everyday and then bathe in acid. Go about your life with that and then come talk to me!” Not exactly the most pithy of retorts, but its a work in progress. :-))
good start, Tanja.
This really made me smile… I have heard quite a few of those!!
You look tired. Are you not sleeping well?
These – from my husband no less – “You look like you’re gaining some weight, we’ve got to get you off that Prednisone!”. Same husband, talking about my unbendable knee (in flare up and causing me to limp) “Why are you limping like that – don’t give in. You’ve got to exercise your joints – why don’t you try straightening out your knee and bending it more – don’t just give in.” Same husband, “Are you sure you didn’t cheat on your diet? That’s problably why you’re having a flare up. Did you have coffee or wheat or sugar or anything?” Same husband – “The rake’s not heavy. Just rake these leaves up and grab that corner of the tarp and we’ll drag this into the woods. The exercise is good for you.” Same husband “[Ex-girlfriend’s name] (who owns a health food store) says you need to go on a diet that changes the alkalinity of your blood — here’s the diet she recommended. She looked into this for you.” I’m fighting ignorance at home — wish my loved ones would have the desire to learn and not just take everyone else’s word but mine!! Very frustrating to always come up short against a ridiculous stream of pseudo-cures – and when I’m at my worst, I’m too distracted by pain and disabilitiy to fight off the ignorance.
Here are some of my “favorites”:
“You should consider eliminating meat.” Note: I have been a vegetarian for 20 years.
“It could be a gluten issue.” Note: I have been tested for celiac, and I am negative.
“You really should read this book _______(insert title) to find out how to cure your arthritis with diet. That’s the way I did it.”
“I cured my arthritis by drinking a bottle of cherry juice each day. You should try this.” Note: I really dislike cherries.
“I think glucosamine helps the most.”
“I’m sure there is a natural cure out there. Have you researched this yet?” Note: I have been a vegetarian for 20 years and started focusing on healthy, non-processed organic eating years ago. Additional note: I’ve spent what feels like half a lifetime researching RA.
Most of the time, these comments are coming from people who are trying to help. And often, they legitimately believe that ____________(insert natural cure) will help. However, the process of explaining that I may become permanently disabled if I discontinue the DMARDS in favor of __________(insert snake oil type) is becoming tiresome. I do not wish to ingest strong medicines any more than the next person, but it is a much more favorable option than developing permanent damage.
great list, Marie!
I have heard all of those from othere people, too… I really hate the looks I get when I get out of my vehicle when I park in the handicapped parking spot.. esp.. the older people, they think there is no way you should be using that plackard.. we live in Montana and esp. in the winter ice and snow is everywhere so I really appreciate being able to park closer.. my husband always goes and gets the cart so I have something to hang onto… I have really enjoyed this site..<3 I have had a really hard day, so I have been looking for sites to do with RA, Sjogrens and Fibromyalgia and Osteo arthritis… some days are hard..
Good to have you visit Rae. Many of us have that “collection” of diagnoses and its great to hear from each other. Helps us feel strong when we go out and get another “look.” Haha. 🙂
Hi. I love your list.
I too have heard a few of these, when I used a cane. I luckily have been able to transition away from medication and stabilize my condition to a large extent through behavior and physical therapy. When RA comes up, some don’t believe me and I get answer #5.
SOOO TRUE!!!!
add 21. I have a little of that in my knee.
have you tried praying? by the way I am a dedicated Christian and was asked anyway,haha
I get so tired of explaining RA when asked,esp when you can tell they didnt really mean it when they ask,how are you? my own sister tells me RA and migraines is just in my head and I believe the devil more than God.if I would call off satan,then God could and would heal me.a church member literally nags us every time in church that our treatment plan of mxt chemo for RA is sooo wrong.gotta go with natropathic healing like she did.oh yeah,shes still in some pain but way better.and I cant help noticing her hands are completely deformed since she went off antiimflamatories,drug anything.and we are the same age too.we told her to each their own treatment and wished her well with her chosen treatment and support us with our choice.she’s left us alone since.thank you!
I love your response Kelly,”oh,you don’t get it yet?
my response would be to add,”I see you still havent done any research on RA.if you really cared to help me,first of all,you’d educate yourself”
esp to the “youre not better yet?”
if people feel its ok to say such hurtful comments,why shouldnt we say only the truth and if they get their feelings hurt,say,”well at least theyre just your feelings,imagine having your feelings hurt while your entire body is hurting too?”
My favorite one people say to me is:
“You may be anemic, did you ever get that checked? Because you may not even have RA”
“But you don’t look sick”
“I know you don’t get up early but don’t understand why.”
“If you’re taking that medication no wonder you’re not better.”
“I found an Arthritis Cookbook on line and people have written in that it cured their RA.”
“Why don’t you go to homeopath and see if they can treat you better than a rheumatologist..?”
“Why don’t you get out more? A long hike in the hills would be good for you. You need to get more exercise. ”
“As soon as you take care of your emotional problems this will all go away.”
Hahahahaha!!!! Long hike! That’s a brand new one I haven’t heard before:-) I actually think I would laugh out loud in his/her face! I’ve been at the receiving end of the “emotional problems”, “medication” and “you don’t look sick” comments as well and it upsets me each time.
Oh my goodness, YES!!! with the you’re too young. After four years, (14-18) my cousin still does not believe I have arthritis. Flat out refuses to believe it. Kids just don’t get arthritis in his universe, and all evidence to the contrary is lying.
I really wish I could visit that universe Angie!
I’VE HAD RA SINCE SINCE 1997/98 FOLLOWING MY 2ND PREGNANCY. OVER THE YEARS,I HAVE BECOME USED TO THESE COMMENTS/QUESTIONS, AND THEY ARE ALL VERY TRUE. REALLY ENJOYED READING THIS PAGE, AS I HAVE FELT QUITE ALONE WITH THIS CONDITION, (DONT KNOW ANYONE IN MY AGE GROUP WITH RA), SO I JUST GET ON WITH IT.
I am 25 and I got dianosed at the age of 20 and I always get the your too young to have RA and my standard reponse now is I tried to tell the doctor I was too young but that didn’t change the dianosis. They usually shut up at that point.
But I have heard all of these before.
I know this is an old post, but I just stumbled upon it today.I really like your list of the “20 things..” and the ensuing comments. I can identify with everything. After reading, though, I thought I should add the worst comment I have ever received:
About 5 years ago I had to have my hip replaced for a second time due to a faulty part that was put in 10 years earlier. A few hours after the surgery (while I was still in intense pain from the procedure and disoriented/nauseous from the anesthesia) a family from my church came to visit (unasked). As the kids just gawked at me from the end of the bed, the father leans over and says to me, “I know exactly how you feel right now; I have kidney stones sometimes.”
Thank goodness for my mother who saw the look of rage on my face and quickly ushered them out, saying I needed rest.
I was diagnosed about 3-4 years ago. Because of various delays in treatment – everything from waiting for my insurance to OK the meds, to side effects I’ve experianced while taking them – the RA spread from my right knee to almost every joint. I’m one of the “lucky” one who don’t seem to get much relief. The last bout I had with side effects was 6 months ago when I had to stop taking Methotrexate. (my liver enzymes shot sky high). I’m now on my 4th different med. All along I kept thinking “What’s wrong with me? Why don’t people understand?”. I really thought I was the only one.
I’m very happy to say since stumbling accross your site I no longer feel that way. Thank-you!
Love the 20 things not to say!!! Like all of you, I’ve heard just about all of them. I’m 52 and I think the only ones who accept me as I am now are my grandchildren, ages 9, 10, and 11 yrs.
It is good to hear from you Corinne. You are definitely not the only one.
But people tell me all the time that they felt that way – RA can be isolating. I often feel that the only ones who can accept my RA are my children (mostly teenagers) so I think I know what you mean. Finding other people with RA has made a big difference in how it feels.
Oh my gosh, I think that I’ve heard nearly all of those during the life of my RA! One that I especially found offensive was in regard to my handicap placard, I hung it up and the person that I was with said “Oh, I wish I had one of those!” I felt like stating that I would be glad to give it to them if they would simply take the RA as well! 🙂 And that person is not the only person who has verbally envied my placard! I have also on more than one occasion been told of the liquid miracles, to not eat tomatoes and to eat more blueberries, and the miracle rubs and pills. Some of the things I actually tried in a desperate attempt at feeling better all to no avail. I understand that people are usually well meaning when they offer up thoughts or advice, but it’s almost maddening as though you’re not just sick, you’re kind of dumb that you didn’t think about it or research it enough. Countlessly I have been told that I am too young for arthritis. I am so glad that I found this website, I finally feel not so alone!
Just discovered RA Warrior and thrilled to discover others that “get it.”
At church yesterday someone stopped me to ask about my limp. After a short conversation, she ended it with “at least you’re not in a wheelchair.”
Hmmmm….yes, but not the most encouraging thing to say. It would be on my list of 20 things not to say….
God bless!!!
When I was first diagnosed with RA, my sister-in-law (who is a registered nurse) and her husband said 5 of the 20 things listed here. Plus 2 more things that I will now add.
21) At least you people get the better medications. (She has osteo)
22) When your better and are through taking that medicine you will be able to drink(wine&margaritas)again.
At this time I had been in so much constant pain that I was mentally and physically worn out. The comments they made were so hurtful and only added to the GIANT burden that I was facing. Now, as I see it in writting I can laugh at it.
I’m glad you can laugh now, Debra. That helps some. I can guess how you felt – family members said these things to me too.
Dear Kelly, I cannot even believe that I found you and this WONDERFUL web sight!! I was diagnosed with severe RA 2 months ago. I had no idea what this disease was about. One night I went to bed happy and healthy and in the morning I awoke feeling as though I had been run over by a Mack truck. As you well know, it has been a nightmare ever since. I have struggled to try to put into words how I feel, what I am thinking and going through. It took so much energy, that I didn’t have, to try to explain to those closest in my life. I did such an inadequate job that I would end in tears of frustration. Thank you for doing it for me, and so perfectly!!!
Did you know you can send a post to them with the email button below each article. If you think they’d read it. 🙂
No, I didn’t know that it could be done that easily. I will certainly try that. I sure hope that family and friends will take the time to look at the info. When I found RA Warrior early one morning last week, I read on for hours through tears of great joy and relief! Because I am newly diagnosed,I didn’t think that anyone knew or understood all that was happening to me. A VERY scary feeling! Thank You, more than I could ever say.
re: insensitive comments-has anyone heard this…”maybe you brought this on yourself because you’re too stressed;you should calm down and learn how to relax”- in essence, blaming the victim/i work in a healthcare field which implies we are the masters of our own immune system-those who don’t exercise correctly or think positively will get chronic diseases and/or cancer.
“What Not To Say” especially from your spouse! lol I love my husband with all my heart but I could just pull his head off when he says, “I walk like that when I first get up too!” I finally told him maybe he needs to get tested! Then I had another woman say to me, “Oh yeah, I’ve got arthritis in this finger so I know exactly how you feel!”