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?
So, so very true!
“But you’re not laying in bed so you must be doing okay”
wth is that?! I get that alot. I’m a Mom to 2 boys and am trying to run a household. If I could, I WOULD be in bed all day. Some people think that just because I am up walking around, driving and doing laundry that I am okay. Now there are days I have to be in bed…sleeping, laying on a heating pad, medicating, etc. but sometimes a Mom just has to get up and do things no matter what. People can be so ignorant!
(Hugs to all of us Moms who struggle to raise kids while battling this awful disease)
I totally agree with you. I have 3 boys 🙂 They keep me on my toes 24/7
:skywalker: :soldier: :party: thx Michell. Moms still have to be moms.
you are so right! sometimes no matter how much you hurt,you still have to force yourself to do the things that just cant wait.people l have known many years still look puzzled when l explain why l didnt attend a certain event,like l never told them l have rheumatoid..and when l try again,l see an almost instant glazed,bored or uncomfortable reaction.lf they really cared,especially family,they would do some simple research on how to be supportive and helpful instead of ignorant judgement!
yep. 🙂
I refuse to tell anyone I’m dealing with this because of that exact look you are talking about…
Absolutely… I have two young boys myself. Its very hard sometimes.
So true. As moms, we have to walk around and be able to do things no matter what. Hugs back.
Yeah you got some of my favs in there. I have garnered a new one. Do you have any shoes you can walk in besides those crocs?
I agree with the your too young…I was 25 at onset and 28 at DX..41 now…and Oh, are you not better yet is my petpeeve…
Can I reply to that “Oh, you are not better yet?” with this:
“Oh, you don’t get it yet?” 😛
I got a little of that in my knee.
yep. seems everyone does… :-/
I have heard them all. The vitamins, exercising, losing wieght. Ironically, I did not become inactive until RA, and well techically, outside from not execerising enough, i have not stopped being active. :struggle: You have to have RA to actually understand what it is like.
Lana, ditto to all of it. I still do more than lots of people… (lazy people 😉 )
I just don’t get the “ironic” part: Most RA’ers I know were extremely active or athletic before RA stopped them in their tracks.
Hey, instead of thinking that laziness causes RA, maybe they should consider that it was athleticism. Haha. No, I know it isn’t anything we did…
that gave me a good laugh! thanks sweetie
I *hate* the at least its not cancer!!! Frankly I would rather have cancer (bone, a good friend suggested) because at least I know it’d be cured, cut off or I would die of it. Instead of spending half my weekends wishing my husband would take me out to the woods and put me out of my misery once and for all. Suffering is inhumane, but yeah, at least its not *cancer*…
sighhhhhhhh, yes. 😐
Heather:
Know that you are cared about, especially by people who read this blog. I know there is no magic pill that will take away the pain, but your life is important to someone…ME.
Heather, you are so sweet. You matter to me too <3
Cindy
Over a year ago I was diagnosed with breast cancer. After the mastectomy, I started chemo therapy. As an RA sufferer, the chemo drugs enhanced the joint pain. After chemo was over, my already compromised immune system went crazy. I ended up in the hospital for two months. I lost my ability to walk and I can only sit up for an hour at a time if i’m lucky. You want cancer? Really? You are speaking out of extreme ignorance. If you think cancer is easy and pain free, you’re WRONG. I’ve lost relatives to bone cancer. It was years of intense pain followed by death. Years of pain, treatments rewarded by death.
RA is awful–the pain is debilitating. So is cancer. I have both–I don’t want either!
I also don’t want to be angry, but I can’t help it. Your comment was thoughtless and insensitive. Those of us who battle our way thru everyday and try to remain positive wish you relief from your torture as we wish it for ourselves.
Barbara,
I’m sorry what we commented hurt you.
I don’t want to get into a contest about whether RA is worse or cancer is worse because there is no answer and no one could win. Last week, I wrote a post on Health Central about NOT one-upping with illness. You can read it at that link.
From seeing people I’ve know closely, I see some cancers worse than any RA could ever be… Some have RA worse than other cancers…
Of course none of us wants RA or cancer for ourselves or anyone else.
But all of that said: I really don’t believe that was Heather’s point. I don’t think she meant it that way. She hates being told: “At least it’s not cancer” while she is suffering with no relief and no end in sight. She hates that no one understands what RA is, while everyone seems to grasp cancer. I think that’s all.
I know these things get sticky. But we so much need to be able to get things out in the open. We need to be able to speak about these problems.
Barbara, I was afraid someone would get mad that I even put #16 , the cancer comment, on the list. But it is true. People do say that. And it’s wrong. Several people I’ve known with “minor” cancers have been cured in a matter of weeks or months. Those very people have no comprehension or sympathy for my painful RA which has disabled me permanently and will (statistics say) take 15 years off of my life. We are not asking for top billing over cancer. We are just asking for a little understanding that we are sick too. I hope this helps you see my thinking process anyway.
Barbara, Thanks for coming here and commenting. I know you have more experience on this subject than most. I was also upset when I read some of the comments.
Heather, I have often told my husband that sometimes I am just ready to die. I am not suicidal and never have been, but sometimes the incessant pain, fatigue and disability of it all is just overwhelming!
I have lived through a solid 17, maybe 18 of these. Lana is right, you have to have RA to understand it. No one gets it.
Thanks for the Monday morning laugh (it’s really sad but also funny). The one that kills me is the Grandma one…I’ve heard that so many times. I think this is the linking of RA with OA thing.
I have a friend who everytime he asks me how I’m doing, starts flexing his fingers and saying he has arthritis also!
))))))) So fun!)))
LOL. These are GREAT! I’ve heard almost all of them. I guess I’m glad that I don’t “look” sick but JEEZ…
I could have not said it any better. I love your web site it is great. I invite you to come and share what not to say in my forums chatter room. My members will love it. Feel free to join and place a link to your wonderful blog, so helpful !
If you share this with non-RAers, you might also want to share “13 Ways to Help People Living with Rheumatoid Arthritis” https://www.rawarrior.com/2009/11/13-ways-to-help-people-living-with-rheumatoid-arthritis/ . It’s a perfect lead-in to help people who don’t know what to do or say…
“Oh, you don’t get it yet?” Love that!
I usually put on my educator hat and use questions as a way to raise awareness. But having a snappy answer (that I don’t necessarily say out loud) certainly helps to restore my good humor.
How about we all brain storm up some more snappy answers for a follow up post? Remember, we don’t have it say them aloud. Unless of course, its really deserved!
Here’s a favorite of mine: “And what school of medicine (or you can fill in nursing, pharmacy) did you attend?
He he!
My persoanl favorite “oh yeah my brother has that….he can really feel it when he golfs.”
I was only 25 when I got diagnosed so I get “But you’re so young!!!” ALL THE TIME. I actually wrote a whole rant about it on my blog a few months agi!! ~;o) If you’re interested in that post: http://fromthispoint-forward.blogspot.com/2009/04/but-youre-so-young.html
Lately, when I get “But you’re so young!!” I’m leaning towards this response: “Hey! At least I’m younger than you!!”
Or a good friend of mine suggested: “and YOU’RE so ugly! But somehow you manage. So shall I.”
Thanks for collecting all these in this post! It made me smile.
All I have to say, blessings to you Barbara– blessings to all of us… one day at a time, that is all any of us can take, one breath- inhale to exhale… blessings to all of you….. in kindred spirits I send you the best of what is in all of us, life and living…. oh yeah, and HEY there Kelly- just me dropping off a hello and hug!
Oh yeah, I did want to add this one note Kelly, people dont get it when I say the weather makes my RA worse, it does in fact get worse when there is a sudden change in the weather.
As one Dr stated ((( To examine this point, many years ago at the University of Pennsylvania medical school, J. Hollander M.D. built a climate chamber and used volunteer patients as his study controls. He was able to prove with certainty, that the combination of high humidity and low barometric pressure definitely were associated with increased joint aching and stiffness. This makes sense. Rheumatoid arthritis joints are inflamed and under pressure because of increased joint fluid. If you lower the barometric pressure, the inflamed joint will swell, stretching the inflamed joint lining and capsule.
Of course people look at me twice when I say my RA is acting up more with the sudden change of weather
Kelly HUGE question here, have you ever read or researched this ? http://arthritis.about.com/cs/antibiotic/a/antibiotictreat.htm
I keep getting told variations of ‘its in your head’ particularly by people who have only seen my on prednisone (which works very well for reducing my swelling and finger use). My symptoms started suddenly less than 6 months ago and I was going through a rough time after the death of my grandmother. A cousin told me about a month ago after hearing about this that he ‘loved me and wished I did not make myself sick’. After not feeling well for a few weeks and then going out one night last weekend everyone I saw assumed I was ‘better’. I feel a tremendous pressure to seem fine for all of the above reasons and for work as well. My girlfriend last night told me she ‘cant keep up with all my health problems’ and i tried to explain they are all one and the same and got a little angry. Thanks for the post.
Francesca,
I am so sorry. I deal with the same things. I have a neighbor who sees me as a hypochondriac. And I’ve heard variations of what you describe. I have family members who are confused, too.
As I’ve said before, it’s aggravating, but we have to fight the war against ignorance and we have to fight the disease itself. No fair.
But at least we are all in it together. So we get it. :silly:
Oh Francesca,
I forgot to mention. Trauma often is a trigger for the latent RA to come out full force. Maybe we could get an article about this to show your cousin…
That sounds interesting and would make sense in my case. In addition to losing my grandmother there were 3 major events that occurred for my husband and I (one financial that we are still dealing wtih) that just had us spinning in all directions.
There is a lot of circumstancial evidence supporting trauma as a trigger for RA to begin. It’s just a typical story. However, I want to be clear: it’s not universal. It’s not a cause. Little children get RA. Calm, happy people like yours truly, too. RA is an equal opportunity offender. The cause is not known. This is not your fault. The last thing you need is to be told, “and by the way, this is your fault.” Just want to be clear.
Francesca,
My story is similar to yours . . . I’d been in a car accident that left me with permanent damage, lost my grandmother/had falling out with my mother, court issues and then 4 months before screening, fell (which resulted in a Grade III sprained ankle) . . . .
I have a family history of autoimmune disease,, but I think trauma/stress pushed me over the edge . . .
{gentle hugs}
HaHa!! Great Post! This is very true of people who do not understand what its like to live with rheumatoid arthritis. They always think they have the answers. My favorite one is you should exercise more.
Kelly –
I am RA SB – can’t remember if I introduced myself before or not. But either way, thanks for some really good posts!
I wanted to comment about what you said about the “irony” part of RA. I just said on Wren’s blog this past week that I have YET to meet an RAer that isn’t/wasn’t a TYPE A before/after the disease. I completely believe with all of my heart and soul that there is some kind of mind/body connection with which we’re all dealing, almost as if this is God’s way of saying, “You WILL slow down and enjoy life, if I have to cipple you to do it.”
Don’t get me wrong. I do not really think God works this way, but there does seem to be an almost interal alarm activated immune system trigger which works in those of us overly-achieving to say, “Sloooow Down!”
-RA SB
QUOTE from above: “this is God’s way of saying, ‘You WILL slow down and enjoy life, if I have to cipple you to do it.’”
I have no way of knowing exactly what God is thinking, but I did slow down & enjoy life plenty before RA. I have to enjoy it differently now, because I have unrelenting RA in every joint.
I agree we all need to take time to smell the flowers, as they say. I just don’t want anyone to read this & think they read on my site that RA is God teaching us a lesson. I know you didn’t mean that.
Super WOMAN! LOL! Loved your post about being Type A— can relate so very well.
And if God is telling me to slow down, I will accept that: I merely wish the instructions came with less pain/medication/social ignorance from others, etc….
Never give up! I say that now—I start MTX in two days—to quote Tori Amos…” we’ll see how brave you are….”
But this sit is amazing- bless you all
Nicole
Girl,
That is exactly my thinking in reflecting on all this. I ran around at top speed carrying the world, and now I am forced to appreciate a more contemplative life. lol But you Know, even with everything that I’m trying to cope with, even with the struggle for balance, i have joy. I pray for that for all of you my fellow sufferers. Joy will fight this disease.
You hit the nail right on the wall! I’m always hearing ‘you’re to young to have that’!! 😀
Yes, I know what you mean. But if you think about when and why flares happen, they always seem to be tied to stress, over-doing it, lack of sleep, etc… At least for me, I have discovered those consitent triggers.
To me – RA seems like the ultimate behavioral modification plan. As in, go ahead and stress over paying that bill, but then you’ll be stiff and achey later. Or, you can try praying, meditating, let God take over your worry and you’ll likely have less pain and suffering instead. Do you see what I mean about how all of us are being “directed” by our bodies to change the way we deal with stress?
-RA SB
P.S. Sorry I spelled “cripple” wrong – too much typing today!
I actually miss the comment, “But you’re so YOUNG!” I just realized the other day, it’s been years since I’ve heard it. I was dx at 27 and now am 41! I guess I’m old enough to have RA now.
RA SB, I may be the odd one out here, but I have had flares hit me out of nowhere. I have rearranged my life to make sure that I get a minimum of 7-8 hours of sleep everyday, I have learned to not worry or stress over the things that use to drive me crazy. Most everyone knows that I push myself pretty hard and bring on most of my flares by riding my dirt bike. I’m ok with a flare if I know that I caused it and had fun getting there. The ones that I don’t like are the ones that just hit me out of the blue.
Having RA is a constant learning process and learning to listen to my body has helped me a lot. Sometimes I can feel the early effects of a flare coming on and I just shut down what I’m doing, get some extra rest or catch up on my computer. After a day or so, I’m back to normal.
I’ve never looked at RA as a behavioral modification plan that God has bestowed upon us. I really don’t think much about why I have it at all. I just go out and do the best I can and enjoy life as much I can everyday. Some days that is no more than laying on the couch watching CSI reruns while other days I’m on my bike putting in 150 miles.
If stress or god is a trigger for RA. Then what stress could i have been dealing with when i was 8 that set this off and told me to slow down? my parents weren’t divorcing or anything major like that. And seeing as I don’t know how I feel about god in general I can’t say god gave me this either.
So I have RA, not sure how I got lucky enough to get it, can’t dwell on that. I can only move forward at whatever pace each day holds for me (even small steps, are steps forward). I choose to fight for funding, and lobby for health care reform & educate people who make comments like the ones stated in the blog. So no slowing down for me. I want all of us to have access to meds, doctors & a better life.
thanks
e
Thar-
You know. A lot of other RAers tell me the same thing, but I can honestly say that I have NEVER had a flare that was not triggered by stress or over-doing it. Now, I have pain that comes from nowhere. As in, I’m following a good routine, and my hip just went out for no reason. But as for those – knock me over and everything swells and I can’t move or speak flares, I have NEVER had one come from nowhere. Knock on wood.
I’m sorry for you guys that can’t connect them. It must seem very frustrating.
The frustrating thing for my RA is that I know very well why the flare has come on, but I can no more stop myself from worrying over my son’s ear infection than I could stop breathing. You know?
-RA SB
Gosh it would be so nice to get a question answered on here once in a while LOL
Viesta, I’m sorry I haven’t gotten to the antibiotics question yet. I have been working on a post about that. It is too big of a question for me to deal w/ in a comment. It is huge. I have some things in the works already.
Maybe I can explain why I am behind:
I spend about 2 hours per day helping people with questions like this. That is why I started the blog: to help people without killing myself re-writing the same answers. However, right now I have a backlog of 150 emails unopened, 30 comments to which I wish to reply and today’s post not begun. That is the tip of the iceberg. I’m in my car in Orlando with my kids for the dentist and stopped to get internet access just to moderate the blog. I work 12 hours a day on RA Warrior and it costs me financially to keep it online. Yes, I have trouble keeping up and sometimes I get behind. I have been very sick with chest congestion and went off my RA meds too since last time this led to pneumonia. I never talk about my own situation. I’m sorry if you felt that I ignored your question.
We appreciate you Kelly & the work that you do!
Keep the faith… What faith…………
Oh you mean George Micheal????? I say
My mother tells me its because I dont pray enough.
I need to repepent, What is wrong with people? and this is my mother, go figure.
Whoa, I am sorry Kelly, I did not mean to come across like that, just having some grump days here, sorry about that.
Viesta,
Forgiven! :beauty:
Sorry you are having a bad time. It was a really tough week here too as I was saying. Still have about 6 hours of work to do & its 8:30 here. I really do wish I could do more…
I am on your side. I appreciate you (and others) who engage, encourage, and inform here on the blog!
I had not realized that the way I expressed myself had caused such an uproar until Kelly emailed me about it yesterday. She has given me permission to post my reply to her on here and share it with you (all). Let me also state that my intentions and expressions were taken waaaayyyy out of context. Here is the email-word-for word.
Ok Kelly,
So here’s the deal. I think her voice is valid, but I don’t think it should trump my voice. I made a very personal comment on how I felt and it had *nothing* to do with her. I am sorry she feels that way and think she’s an awesome woman for surviving and keeping a positive attitude through all the really tough challenges (understatement of the century, I know) she has been through. I’m sure that my comment sort of had the same effect that my friend’s comment to me about bone cancer did. I am sorry for that but I am not going to take my own feelings away and hide them in a corner because I might hurt someone else’s feelings. That’s not fair either. I in no way was being flippant or minimizing the effects of cancer. I would venture to guess that most people these days have been personally touched by cancer, weather themselves or a family member. What I meant by my statement had to do with that, the powers that be, who are working very hard for a cure and treatment for cancer that has an very clear endsight. We know the causes of many cancers and treat it effectively and *CURE* it. RA does not have a cure, it only has treatments that take tolls on our bodies almost as much as the RA does. RAers don’t have hope for a cure in the same capacity as those with cancer do. That is pure fact.
You totally understood what I meant by what I said, and I thank you for that. Are we supposed to feel all upbeat and ‘positive’ all the time? That’s the rub I get from reading the internet about this (RA). The “just grin and bear it” attitude? Hide it in a corner and pretend its not a big white elephant in the room? I am sorry but I really am upset that I have this, its a huge deal to me to loose the ability to do the things I used to do. Its a huge deal for me to not be able to run anymore, to not be sure weather or not I’m being a ‘baby/whiner/pain in the butt/crazy’ complaining about migrating joint pain to my Dr., to not be able to follow my dreams and whims-because physically I can’t.
And not for nothing, but what if I really was depressed when I wrote that? What if someone posts on your blog the psychological pain they feel associated with RA? What if people with RA are feeling angry/upset/frustrated instead of happy go lucky…’oh well’ attitude? The way people define themselves has a huge effect on their personal outlook on life and their life with RA. Can they cope, or do they need help coping?
Again, just want to say I am sorry that she feels that way. It was by no means a personal attack.
I am also sorry that you have been putting so much energy into this ‘incident’. I hope that you don’t take it personally (what she said or what I said) either. I appreciate having a place to voice my thoughts and read about RA and learn more.
Please get back to me as soon as you can.
Heather
Heather,
Thanks for posting this clarification.
It’s a good idea to click the little subscribe to comments gagdet to see whether folks reply to you. Just a helpful suggestion. I hope it’s working correctly.
I am 36 years old and was diagnosed with severe RA just over a year ago.
I’ve been told I need to have more faith in God and less in medicine.
I’ve been asked if what I have can’t be cured with diet and exercise.
Sometimes I feel as if it’s all in my head and I was silly enough to stop taking my meds for a while to see if it was… The pain pretty much convinced me it’s not in my head.
So happy I found your blog. Thanks for sharing so much information.
Hi Ms. B, Welcome!
Unfortunately, I’ve experienced the same comments. It’s sad that even those who are close don’t seem to realize that this is a serious illness, even though it is invisible to them. I am becoming convinced it is the most misunderstood illness in the world. People either think that we are malingering or that we are being foolish when we take the most advanced medicines known to science. How far the truth is from what is generally believed about RA.
I am so happy you found us too!
Ok, for a newly dx RA’er these are my “favorites” — “I don’t want to talk about “it””; “I don’t want to “hear” about “it””; “You’ve always got something wrong with you”; “why are you always sick?”; “you just need to get out of that bed and start being a better mom and wife.”; “If you would just stop all that medication your on you would feel a lot better”; “your doctor said its “mild” so I have a hard time believing when you tell me you could die from this”; “you just need to cowbow up”; “pull yourself up by your bootstraps”; “my mom still cleaned and made dinner when she was feeling bad”; ——-Well I guess I put in a whole lot more than a “few” of my favorites but gee all of them are so good I would feel bad about leaving out any of them!! Kelly says you learn to become “private” about RA. Today I started telling my husband something I learned about the symptoms I have and he did not hear me and asked, “what” and suddenly I felt insecure and just said, “nothing, I said nothing.” I can already feel myself becoming “private” after only 1 month. Sad and pathetic.—them, not us. :cat2:
Oh, Irish-
That was so well said.
First,
I never heard someone else tell me so clearly that they understood what I meant about becoming “private” about RA. It only took me a couple of times of having EYES ROLLED AT ME or comments like this: COME ON, YOU AREN’T OLD ENOUGH… or HAVING SOMEONE IGNORE ME & CHANGE THE SUBJECT or SAY ONE OF THE THINGS ON THE LIST ABOVE TO TRY TO MAKE ME STOP TALKING ABOUT RA… yes, within a couple of weeks I became private as you say.
Second,
I am so sorry that anyone said any of those things to you. Isn’t it enough that you hurt physically… It may be typical, but it’s still wrong. And I hope you will be able to find ways to gently tell the truth to whoever will listen. We have to. No one can tell but us. We are the only ones who know. 😎
Literally NO JOKE was I told, “oh I know what you mean, I have a cold” I was speechless. G-d willing, one day, my AS will be as easy and simple as a cold but until that day… I’ll never get over that response. It was in response to me being in the hospital for my AS this spring! But the more I try and educate people and update them on how I am feeling and medical treatment is going the more they realize I am NOT KIDDING and this is NOT a cold but a serious medical condition that will plague me for the rest of my life and requires accommodations. I would never have realized that educating and updating people will be so helpful, your blog is what taught me!
Wow–I’ve heard almost all of these! Just had the “cancer” one the other day. “I know what you have is bad, but…”
(Safe to say you can ignore everything that come before “but”.)
I was also told not to think so much about it–think about that girl whose face was ripped off in that car accident. (Oh, thanks–I feel much better now, even ashamed for feeling anything about my RA.)
Great site–glad I found it!
Hi Mary,
Welcome. Nothing to be ashamed of. But we can feel embarrassed when RA is compared to serious life-threatening situations like that. RA is actually a killer too, just a very slow one. It was a factor in my own grandfather’s early death.
I don’t know why people react that way. I can only guess that they just don’t know what to say to what looks like an over-reaction on your part. Hopefully, education will change this eventually.
I used to work with a woman that would tell me all the time “Wait until you get older and things start hurting real bad…”
Yeah, she was there through my initial flare and diagnoses. She used to have to fill in my work because I literally could not do my job.
Sarah, I don’t know how far away you live, but could you hear me groan from there? :talktothehand:
Yup, I’ve heard “you’re too young for that” many a time. I’m 19 and have had RA for four years.
I also hate being asked how I feel every time it rains. And hearing any sort of joke about arthritis, even if it isn’t RA necessarily.
Hi Cari,
Yup. Wouldn’t it be nice to just be asked, “How do you feel today?” instead. 😎
When they say, “You’re too young for that,” I’m wondering: do they think we just lied or what? If you say you have RA, then you have RA… At 2ce your age, they still say that to me…
i get the …. have you ever thought the pain is all in your head ….. bs and the in 2 months you’ll be cured…. lol ha
That is all so true!! I heard you’re too young for that just earlier today! I also hear you should stop exercising, and the bags aren’t that heavy! I have to explain that it’s not like osteo arthritis!
I get told constantly to go slow and relax, but with two boys aged 7 seven and three, thats a little hard, I also find that keeping active stops me from stiffening up. x
“You’re not in a wheelchair, you’re not disabled”, and I also get the “Well if you were more active”… thing. I can remember a doctor telling me that I was overweight and my JRA would go away if I was skinnier. :pain: 🙁
Oh, ok, so thin people don’t get RA? Please! 😕 Weight is not relavant to RA status. I’m tired of reading that on websites that claim to help Rheumatoid Arthritis, too. (I weigh less than 120… COME ON folks – think!
My favorite thing to hear is “You’re ALWAYS tired”…
Some friends family said “Oh yeah, yada yada had that. I think she used gold and felt better.” Completely clueless about RA and it’s effects. And that’s ok, I would rather them be clueless than have this disease.
yes, I know. But can’t anyone “get it” without getting RA?
The things I hate to hear are:
“Oh, you just need to exercise more” (this is what my husband said before i was DX with pericarditis w/pleural effusion that was making me short of breath)
“You would feel so much better if you got out and walked”
“Don’t be so dramatic…..it isn’t a death sentence. Over a million people have it, and they are still around.”
“I think you just want people to wait on you.”
“I think you make it worse by going on the internet and reading all that crap!”
“You need to eat more.”
This is a good one from my husband…….
“You’re tired all the time because you stay up late and go on the internet, then sleep all day!” (This is when I am having a flare w/RA and Fibro,totally wiped out,and as always it causes pericarditis and exacerbates my Asthma especially when I lay down flat. I am forever using my rescue inhaler after I rise from a prone position…So, I sleep in my recliner in an upright position as to not accumulate so much leakage into my lungs.)
Whitetiger, I hate all of those. :no:
Number 2 is my fave. when i was diagnosed 5 years ago when i was 15 people really liked to combine the too young and the grandma one.
“You dont have arthritis your too young, that’s something my grandma has” can tell you how many times i heard different variations of that one!
Me too. I feel like asking, “Do you think I’m lying? Or what?” 😎
My aunt told my mom that I just wanted pain killers. I was so appauled. Pain killers are the LAST thing I want. Ughhh..
Juli, It is a shame that RA patients have to deal w/ that nonsense. I guess we can be appalled together at this stuff. 😛
Kelly —
I’ve been following your blog with great interest and admiration since that article appeared in the NYT about the voices of RA.
Recently, I’ve seen a number of blog posts on this same subject of “What Not to Say.” For example, there’s a blog post now at PsychologyToday.com about the “Toxic Ten” worst things to say to someone chronically ill.
A commenter there asked the blogger — no response yet — a great question, that I wonder if you might comment on, either here or by blog post. If there are 20 things NOT to say, or a “Toxic Ten,” what are the best five or ten things TO say to someone battling a chronic illness,? (And please take into account that one might be hearing these same things over and over, the same way that one hears the 20 Worst or “Toxic Ten.”
Thanks! Keep up the amazing work and amazing fight.
LOL!!! I woke up feeling lousy and I think God just directed me here! I’ve had a grand time laughing. i’m 26 and I’ve had RA for 3 years. The past two weeks have been an emotional and physical low for me. I’ve got the “you’re too young” one and the vitamins, omega 3 etc remedies (I’ve drunk some yucky stuff!)And, who said she hates being asked how she’s feeling every time it rains? Me TOO! Gosh, i have ceased to feel all alone in the world. It’s amazing how this not so-smart/sensitive comments are totally universal (I’m Kenyan).
Hi Daisy, thanks for the smile. I love to hear from Kenya! I have a friend from Kenya who married a guy from my church. 🙂