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?
How does one respond when your mother says to you: “If I knew then what I know now about the RA I probably would have aborted you,
I agree..The Your not better yet? really gets to me. I had onset at 24 and i was diagnosed 2 months ago at 28. Or the When are u going to get better really aggravates me. And those are only from family members. I never complain to and or around them for this purpose. I have two children, and they are a handful to keep up with. But SOmetimes i just want to scream with frustration when i hear what some people say to me.
“I mean, does it really hurt THAT badly?” or “Wow, why does your knee have so much ‘water’ in it?” The one with people trying to push their “miracle juices” is really annoying!
“You just need to cut back on the tea (or coffee or soda or whatever) and eating refined sugars.” This was from my old family doctor who was convinced the RA pain was becouse of my weight and my addiction to caffeine and sugar. BY the way, I only really drink green tea in the morning. LOL
Kelly Young Thank you so much for all you do. You are certainly appreciated for your effort to get out information to those of us that have RA!! I an 70 years old and read you post everyday.!! I have gained an enormous amount of education about RA from you and your site and facebook Keep up the good work and I would hope for others to have a little patience.
How does one respond when your own mother says to you:”If I knew then what I know now about the RA, I probably would have aborted you.”
I hope you will have other women in your life who will affirm that you are valuable just because God created you. You are. That has been a big help to me at different times.
My mom has said that to me also. I was struck speachless! She has RA also. The other comment that she’s given me that I didn’t know how to respond to is I think my RA is worse than yours!
irishbookfairy I have had RAD since 94 and it is so hard for my husband to understand any of it, If I mention a pain any where his comment is usually Oh Yea, my hand hurts here too or I have arthritis in my neck also. I try my best not to complain around anyone who “does not get it!!” Hopefully with Kelly’s and other sites like this to go to for knowledge people will eventually understand RAD more. Also taking the word “arthritis” out of our disease will help!!
I hear stuff all the time… I either have a mild RA( positive blood work) 3yrs ago. Or I’m just suffering from Osteo.
I hate when you are talking about it and your issues are compared to someone else’s issues not dealing with RA.
My daughter Megan is 11 and has JRA since the age of 6. She was in remission for 2 years, but had a bad flare up in Dec 2011 – current…we simply cannot get it under control…We live in South Africa and therefore Enbrel is no option as it is very strictly regulated here. As a mom it is so painful to watch her deal with this disease on a daily basis….She is the bravest person I know…We have had all the questions that is on your list. People just dont get what this disease is all about…
Thanks for your website it is very informative and i have learnt a lot.
Regards
Lindie Krug – South Africa
One more stupid question to add, What are you doing with that “stick”?
Just wanted you to know that my heart goes out to you, Shauna. There isn’t any response or excuse for something that cruel. Prayers.
That is true. It seems obvious such a statement comes out of the other person’s pain and a need to strike out at others, not having anything to do with the poor target, Shauna.
I was just asked today, “Aren’t you taking medicine for that?” Yes, but that doesn’t mean I am cured or that the meds even work. Then I am given suggestions of other things that I could have instead of the RA and UC. I have a diagnosis. I know what is wrong. There just isn’t a magic pill to make it go away. Instead of asking me if it could be this or that, how about researching what I’ve already told you I have. Sorry for the rant. Frustrated is an understatement.
Dear Miss Becky and Miss Kelly, I wish I could say I let this one roll off my back but even after a lifetime of emotional and physical abuse this one has haunted me ever since she said it. This coming from the woman who took it upon herself to tell MY nine year old daughter that abortion is “murder”. I have no idea what it is like to know or feel a “mother’s” love. To take comfort in the arms of unconditional love and support. When I was nine and told her my knees hurt she pushed me away accusing me of “just wanting attention”. I grew up lonely, isolated and fearful with a heart full of love to give. I kept it, somehow, somewhere safe and gave it all to my daughter that I wanted so much. In turn she is the most amazing, loving, compassionate and devoted daughter and young woman and I couldn’t be more grateful and proud. My daughter has a loving relationship with her grandmother which is why mother is still a part of my life but I have since decided that mother is much too toxic to remain a part of my life and my daughter understands. I have not told my daughter what her grandmother said, there would be no point.
I’m lucky in the sense that my family and co-workers got to see what Iritis and Episcleritis did to my eye. It was like something from a gory movie. There was so much edema on my eyeball that I could not close my swollen eye lids over it. And the redness on the white of my eye turned an almost purple color. I was swollen from the brow bone down to the top of my cheek bone.
When it comes time for me to tell people about RA I’m going to remind them about my eye and tell them that the same thing, inflammation and swelling, is now happening in different parts of my body. That will put things in perspective for them.
I have recently been diagnosed with RA, March 9th, 2012 and I have already had some of these responses at least 6. Very true that some people don’t understand. My first appointment with the ra doctor isn’t until June.
Sorry you have to wait so long Elaine. Did you ask them if they have a waiting list you could be on in case of cancellations?
Good morning Kelly,
Yes I called right away and I am on their cancellation list. I want to thank you for you this web site it has been so encouraging and informative. By reading the onset stories I realize that some people wait years before they are diagnosed. I dont’ feel that my ra has gone to some of the extent that others have. And I realize that I was fortunate to have a PCP that diagnosed me. When I get all my thoughts together hopefully I can write an onset story for the site.
Again, Thanks
Yup #3 is my favorite–“I have arthritis too, my wrist always bothers me when it rains” lol Really? You poor thing.
I heard a few new ones this week (I’m in a major flare):
-I had the same problem until I eliminated corn from my diet.
-you should really go see my doctor. He is not a rheumatologist, but he cured all my pain from food allergies.
-reflexology is great for things like that.
Ok, I will get right in that.
I was floored last night when I was telling my hubby about this site and all the wonderful info here and we got talking about the need for me to get stuff done ( ie dishes) and he looked right at me and said well my friend at works wife has RA and says she does great as long as keeps moving and that sitting down and resting is the worst for her so maybe I just need to push through the pain and everything will be better
Hi Imogene,
I’ve met people who have milder RA or respond to treatment and they feel like that, but what I wish others knew is that that has NOTHING to do with our RA. I’ve heard that more than once and it can hurt. I hope your hubby will read some of the many thousands of comments here to see the wide range of experiences w/ it.
Hi Kelly,
I recently had my 1st visit with the RA Specialist. When tested at my PCP’s office in March my ra factor was very high 237 I think. Today, after waiting 3 months, the RA Dr. said that test did not mean that I had RA. He thinks I have osteoarthritis, so he sent me for x rays. He said I probably had an antibody just floating around that caused the results to be high. I am very upset, because I know that I have not hurt in all my joints like this before. nor have i had fatique like this before. Because I have no swelling around my joints is my guess he said I probably may not have RA. No blood tests were taken. just sent for Xrays. Can you shed some light on this or anyone else, that has had this happen to them. I so confused.
The x-rays, may have showed OA, but that doesn’t mean you don’t have RA (it may be that it just hasn’t started deteriorating your joints yet). Get another opinion. The fatigue thing is a big flag. Is your pain symmetrical? I went to several doctors who told me I wasn’t swollen, even when I pointed it out to them. Good luck!
Hi Elaine,
I’m sorry you’re going through this. I’ve heard the same thing happen to many people. You may want to read the comments pages here: https://www.rawarrior.com/rheumatoid-arthritis-swelling-my-confession/ & https://www.rawarrior.com/rheumatoid-arthritis-swelling-take-two/ . You may also want to read through some of the RA Onset Stories.
Will you be able to get a 2nd opinion soon from a different doctor? There are obviously some that are much better than others. If it is RA, treating as early as possible is important. Good luck.
How about “You aren’t planning on having anymore children are you? It really isn’t fair to them if you end up in a wheelchair!”
Thanks!
I’m glad I found your website, I found out 2 weeks ago about my RA and up till now still struggling to accept it.
In your article it is indeed funny how other people react when they hear their friend has RA my experienced was varied, some giggle and said “Yeah, you’re too young to have RA are you sure doctors got that right?, some says, well, at least it’s not a big deal! and this really painful to hear from an ex saying hahaha… now you can apply for disabled badge! But what others don’t realised is the pain from RA felt like a living dead.
Going Monday finally to Rheumatologist! From my aunt: ” ” is so tired and she still goes to the gym at 4am, works 8hrs, then teaches a dance class; Also: ” ” has RA and Lupus and there are some days she cant get out of bed, and her husband helps her with the child, but she goes and does hair, she stands there all day, working without complaining! From my husband: you just need to feel better and get back to work (if only). From my sister: poor baby. I have realized that even finally, maybe, getting a diagnoses won’t help people understand 🙁
Probably two of the most irritating comments I’ve heard are:
1. You’re leaving already? It’s not that late! Before I was diagnosed, I slept 13 hours a night. I wasn’t getting to work late because I’d been up all night partying, or because I’m lazy or because I’m a poor worker. And when I have to leave somewhere early because I’m so tired, no one seems to understand it.
2. (this is probably my biggest pet peeve): You take too much medicine/those drugs are dangerous/do you know what those drugs could do to you/if I had RA I would try organic, natural remedies, etc. and not take the drugs? Basically, any comment that suggests I have not researched the drugs I’m taking or do not understand the dangers of them. I’m fighting like hell to put this into remission and keep it there. Yes, I know how dangerous these drugs are. Before RA, I didn’t even like taking Advil for a headache. I still dont’ like taking medicine, let alone up to 13 pills a day. But I had a good taste (10 months worth) of the dabilitating pain this disease causes and I’m going to do everything I can to get to live the remaining 60 years of my life.
3. You’re too young for arthritis, it’s probably _____. I’m young. I have RA. Why are you questioning me as if you know better than my doctor and myself?
Thanks for letting me rant 🙂 I firmly belive a saying I recently read about chronic diseases, “Until you get it, you just don’t get it.”
Have you tried running through the pain?
wow, Pennie. (and btw, yes I have.)
Oh AMEN, Michelle – meaning – I am so right there with you! A 41 Year old mother of two boys – and caretaker of my family (mom, grandparents) – I honestly don’t know HOW I do it sometimes. MOST times, truely. There just isn’t a choice. And I do my gosh darndest to make sure no one sees the pain – the limp, the swollen fingers or knees or ankles. I don’t want to deal with all the “comments” and helpful advice. But I am slowing now – in spite of everything. 🙂 I just try to keep finding a way to smile, to laugh now. It is all important…for me, anyway!
I identify so much with these. I have lupus but still… Great blog post. Thanks! ~Amy
This is one that I hate the most upon being asked “what’s wrong?” after explaining it, they say…yea “my knee was hurting so bad the other day, I think I have that too!” REALLY????? I don’t think so!
Or this…maybe you should move to a warmer climate…it will help your joint pain. Hmmmmm you obviously dont get it!
I did have a qualified nurse say to me … ‘You’re very young to have that’…. (and I’m in my 40s!!!!!) –
and a relative –
‘Oh yes, I’ve got that in my finger’ (Just the one!)
and a good friend –
‘Water retention. That’s why your hands are swollen. Water retention’.
Sense of humour required. Sometimes missing.
yes, humor required!
So much confusion. So little awareness!
Thank you for this information. In the last 6 months have become of 2 dear friends who suffer from this horrific disease. Education and awareness is powerful! Seems like there is no relief for the symptoms. This maybe a stupid question is there such a thing as remission? We “healthy community” need to help these patients by bringing this to the forefront of the minds of the NIH to get some additional funding for a cure! So many races for this cure and that cure but never once have I heard of any fundraising for this hideous disease. I am so sorry for the suffering. This is unacceptable and needs a change!
“You should just go to bed earlier” when I’m dealing with horrible fatigue. I also get a lot of “I have arthritis too” and when you ask them if it’s osteo or rheumatoid, you get “I don’t know”. Obviously not rheumatoid.
Thank you, thank you!
The comments that hurt me the most come from my 13yo daughter. RA and other problems have sidelined me for about 4 years now, and she is beginning to make clear that she regards her mother as a lazy bum. I knew these years would be hard, I have two older teens, but I just didn’t expect this.
Another one of my faves not on the list…. “oh, where do you have arthritis?” How bout, all over, how bout depends on the day, how bout, sometimes, my knees hurt worse than my shoulders, but the next day, my shoulders hurt worse than my hands…. The other fave is “You’re not old enough” I has 21 at onset, 23 at disgnoses, only 25 now…. Another reason we need to fight for Rheumatoid Disease, because the word “Arthritis” is misleading.
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Kelly Thanks for posting the 20 things not to say…I finally got the nerve up to like it and share it! Oh Boy! A person i know immediatly put up that i should fire my doctor and be careful of the support sites i talk to! Wow..I deleted it but probably is still out there. I just cant take ignorant comments from “friends”? Thanks for the space to find support.
The one that hurt me the most was from my husband a few weeks ago. I was having a really bad day, trying to do something in RA method. Meaning figuring out how to do it with no hands of knees. LOL. My husband (not understanding RA at all yet), said I was being stupid, and then said I was becomming such a needy-nanny. That hurt worse than the pain. I’ve always been one to do everything without ever whining or asking for help, never afraid to take on any project. I guess him seeing me struggle, he thinks I’ve cracked. Oh how I wish people understood. I HATE EVER BEING NEEDY!!!
of course you do!! It’s much easier to be the helper than one who needs help!
Maybe he needs to read through some of the comments here sometime.
The one that shocked me the most was a new OB/GYN dr that I was trying out told me that I should not be depressed about having RA because at least it’s not cancer.
I have also been told that I am too young to have this and yes, I need to change my diet to a green/gluten free/bread free/red meat free diet.
“You know, Dr. so and so says that there is a spiritual root to that. It’s self hatred, bitterness, and unforgiveness. You should go to his retreat and get help!”
No comment. I won’t answer a fool according to his own folly. :/
good, Kelly. Because that is the worst use of religion there is, to blame a victim. It is void of mercy, which is supposed to be the point.
I’m glad you know it’s not true. You did nothing to bring this on yourself.
Oh…you’re always sick. You just want me to feel sorry for you. My son said that to me. He works in healthcare at the University of Alberta Hospital. No kidding. I can’t make this stuff up
I’m 40 and recently diagnosed with RA. My blood level was very high and my doctor says that means I’ve had RA for awhile and I just did not know it. After speaking to him I”ve realized that I did have symptoms years ago and I just dismissed them as something else. It wasn’t until I went into the ER with severe pains that I started questioning what was really going on with me. Well never the less and back to the 20 things you should not say to an RA patient. Even after being diagnosed n speaking about it, I get this statement!!
You’re just getting old!!
#18 is my favorite –
The whole reason I wasn’t dx 4 yrs ago when I first became symptomatic was because I DO have a high pain tolerance. I wish I would have complained more….. now I have 4 yrs worth of damage on my joints that didn’t have to happen.
Hey all 🙂
I’d hidden myself from the online community quite diligently in regards to my RA due to… Self embarrassment and many of the reactions IRL (covering pretty much all the points in your list). I’d had my first onset of RA at 8yrs old and I’m 21 now. So utterly fed up with people’s ignorance and even from trained medical/allied professional staff (work colleagues). I had a nursing work colleague say to me, “Oh! So your immunosuppressant medication means your more likely to get ill?”. Le sigh~! It’s at the point that even my mother says, you’re just depressed… You need to put on weight… Try more homeopathy…. Why don’t you quit your job and live on benefits…. Etc. It gets me so riled up especially when I’m just trying to cope and carry on while pretending that I’m cheerful and happy (as I’m sure all you peeps have endured in a similar fashion).
Most recently my 16 year old son told me he learned in health class that if I became a vegetarian, it would help with the pain and maybe cure me and that I should juice everything. Of course I was happy he wanted to help, but I told him I preferred to let the doctor handle things.
I think my best quote would be” oh come on your just being lazy”. When in all seriousness , I just don’t have th energy to do things.
I am 26 years old and was diagnosed with RA last week. I am so happy I found your blog and have really enjoyed reading through your posts and all these amazing comments – what a wonderful community!
I’ve been getting “but you’re so young” a lot, but I’ve also been getting “maybe it’s a misdiagnosis” which is even worse. I’m not interested in false hope. I know I have RA and I’m ready to move forward with treatment and attempting to live the best life possible.
Thanks for sharing your wisdom, resources, and encouragement!
Good luck with treatment Julie. You have a great attitude. I’m sorry you were diagnosed with RA but glad you have found us so quickly.
Hi Kelly!
I’ve heard just about every comment that you had on your list, but I came across a real whopper recently and thought I might share it with you all. I had just started to get to know a colleague of a good friend of mine and had been explained to him, briefly, what RA is and how it affects my life. This new found ‘acquantaince’ listened quietly, and when I was done responded with “so, what else is wrong with you?”. I felt like smacking him over the head with the giant textbook I was holding @*#$#^@%!@#%&%$@!!!!!!!
Oh a horrible comment that I got today: “Be careful about what you eat so that you don’t put on weight!!” I have a thyroid condition, am eating healthy as (1335 kcal per day) and I just got diagnosed with RA last week after suffering for a year.
It seems that’s the only thing people can imagine is “unhealthy” is gaining weight. Unfortunately there are many worse things.
I have heard them all! Esp. the low pain threshold one. And I have also been told – “don’t you think you’re over-doing this a little? You don’t hurt that much!” and someone I know says “you should exercise more” EVERY TIME I can’t do something because of the pain. Its so frustrating sometimes!
I avoid telling people about my RA. People ask me what’s wrong when they see me taking a pill. I just say that I’m having a headache. And if I have to miss something because of an appointment with my Rheumatologist, I have to say its a routine check up. Same reason for the monthly blood tests. Life would be so much more easier if people weren’t so ignorant about RA.
I hear you, I had a very bad problem w/my back this past school year. People kept telling me, why don’t you do yoga! I don’t understand why you are still coming into work? Oh really, I can “keep” my job if I take off 50% of the time? Hm, nice to know!
I have had RA for 6 years now and I am so happy I found this website! I have been looking for something like this for years! And, I have heard many of the comments on the list. I have one response I give for a problem I have with my foot. I broke it in a car accident 2 years ago and it will not heal probably. (I’m not sure if that is due to being on biologics..I went off of Humira for a year to try and heal it but no luck and I couldn’t function anymore without it). Anyway, I am often in a walking cast or a boot and I work in a courthouse and I have dozens of total strangers everyday commenting on my foot like “ooh, that looks painful” or “How long do you have to be in that thing?” I got so sick of being asked “How did you do that?” that I answered one guy “I had kind of an accident. It is a long drop down off of that (stripper) pole.” Needless to say, his mouth dropped open and I walked away laughing a little for once! Sometimes, you have to get creative!