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Comments (112)


112 Responses to “20 Replies to Things Not to Say to an RA Patient”

    1. misty says:

      Im 24 years old and was just diagnosed with ra. Its got my hips, wrists, hands, and sometimes my ankles. My thoughts go to anyone who has this pain!

    2. Caryn Sova says:

      My beloved late-husband Joe told me once that he thought RA must feel like getting “kicked in the (male genital region) each and every time you try to move”. God bless him, he really understood! Caryn Sova

    3. I love the answer #3!

    4. Shana Tallon says:

      This really brought some light into my day, &The answers had me laughing(which is great bc today’s a bad day all I’ve managed was to soak in an Epsom salt bath). Thank you! I LOVE this site, especially as a newly diagnosed patient!

    5. Liz says:

      What a great article and series of comments!

      When I told a friend about having developed RA (and Lupus, oh joy) she said “Oh yeah, I have a little arthritis too. It goes away later in the morning, you’ll see.” This was after I explained the difference between one being a disease and one being a condition. My response was something like “No, it’s not going to be going away in the mornings. It may have the term arthritis in it like your condition, but it’s a completely different animal.” I also told her I would presumably not develop a curved spine, which she had assumed.

      I do understand people’s good intentions, and their desire to minimize troubles we may be experiencing but sometimes it’s pretty goofy. I’d like do a shout out to those friends and family members of mine who’ve been genuinely curious and fully supportive. Their attentiveness and understanding means so much to me.

    6. Caryn Sova says:

      I couldn’t make it without Warrior! Most recent stupid and ignorant question posed to me…….After just being released from the hospital for discovery and treatment of Sarcoidosis and Granulomas (I had been in the hospital six months earlier for Felty’s Syndrome and Guillian Barre), my neighbor stopped over and said she hadn’t heard from me. I told her I had been in the hospital and she snorted and said, “for what THIS time???” The sarcasm dripped from her icy words. I said “for RA, it is always for RA… it is chronic and will always need treatment.” She just cannot understand.

    7. April says:

      Thank you. I am newly diagnosed and it’s hard to explain to others why I look fine but “act like” I’m in constant pain. Now I have some responses to hand back.

    8. Teresa says:

      Thank you for your posts. I have been reading your posts for months. It has helped me cope with my RA. At times I feel like I’m crazy because no one understands how I feel until I read the replies on this site. I get, “I have RA to.” When I ask what meds they are taking, they are not “BAD” enough to have to be on meds. So in my mind, I think, then you don’t have RA. Please keep posting because your helping people. Thank you

    9. Kay Mayer says:

      Thank you so much for this post. I will find the suggestions helpful in future response to questions. I know most people are asking out of care and concern but, there are times when it just seems too….much…. Especially, #3 is my favorite. I will use they reply. Who would take these drugs if they didn’t have to!!!

    10. chrystal says:

      I have fibromyalgia among other things, and I must confess I probably have been insensitive to others. I receive insensitive remarks myself so I should know better. Sometimes, words are out of your mouth before you realized what you said. I sincerely apologize.

    11. Christina says:

      I get questioned as to how one day I am “fine” but the next day cannot walk. I try to explain that I wasn’t fine, just not as bad. Plus, I have little to no control over when I will or won’t have a hard time, even with meds, rest, etc. It’s frustrating, but as we all do, I soldier on.

    12. Rachel says:

      No I’m not a hypochondriac, my doctor has diagnosed me with all these pains. But I’m happy that you’re healthy and have no idea of the pain I suffer daily. Please refrain from judging me.

    13. Maria says:

      I hate when I’m asked what is wrong with my hands…it’s bad enough RA has destroyed my confidence but when I’ve been asked that more than a handful of times, I just walk away crying. It’s only time that I’ll get more deformed but I don’t need reminders that I’ll never look the same

      • Theresa says:

        Hello, I’ve had RA for 26 years, started when I was 18 and my hands are a mess! I actually appreciate someone asking me about my hands rather than staring at them. I don’t find it rude, but look at it as caring. Don’t let RA destroy who you are as a person, keep on fighting! I’m to the point now when I can’t walk because my feet hurt so bad, instead of crying I just laugh it off. Of course the laughing turns to tears many times. Hang in there, just remember it could always be worse.

    14. kathy Milliner says:

      I had someone at church ask if I was in pain that day. She was shocked when I told her I am always in pain.

    15. ARob says:

      I’m new to RAWarrior – thanks to all for sharing your thoughts. When I was first diagnosed (about 5 months ago) even those close to me heard ‘arthritis’ and thought, ‘oh, aches and pains, everyone has them’ (particularly at my age, 60). Subtext, “Suck it up and quit complaining.” I was shocked at not just how insensitive people (notably, family members) were, but that they were downright intolerant. Help is hard enough to ask for without having to convince people you really need it. My rheumatologist says the word ‘arthritis’ in RA is a misnomer; he’s sorry it’s even in there. I now explain that RA isn’t a kind of arthritis; it’s a kind of autoimmune disease.

    16. Rich says:

      Its been interesting reading all the comments. Great top 20 list. I have recently been diagnosed with psoriatic arthritis. just to simplify explaining to people I just tell them I have RA. I could write several paragraphs of symptoms and what not. One of the problems with psoriatic arthritis is it is very hard to detect. So that itself brought on a long road. I actually had a Dr. once send me a letter saying I was crazy and should seek help and he did not want to be my Dr anymore. I was never one to go to the Dr. much but the RA hit hard about 47 and I had to seek help. I have had arthritis pain for many years in various joints and just accepted it. But when the Rheumatoid part hit I couldn’t function anymore. I think my most frustrating part of how others react is they think I am just in a bit of pain because of arthritis. Frustrating to me because Im sort of a workaholic, I have had to accept this Rheumatoid part to survive. Its not the pain of arthritis that brings me to a hault it is the Rheumatoid disease that brings me to my knees and leaves me with arthritis. I was doing fine with just arthritis. But RA hit me like a ton of bricks. Put me in the hospital twice before I realized I have to manage this, whatever it is. I could talk forever about my issues so I will cut it now. But I did want to tell everyone about something that helped me through my first bad summer. I swell bad in the heat and spent all last summer flared. I like to gold mine as a hobby and discovered working neck deep in a 50 deg river does wonders. Amazing results. I had one week I was stuck in bed. Ironically a self induced flare trying to prove to a Dr something was wrong. After 5 days I told my wife I cant just lay here and if I cant work in the gar Im just going to the river tomorrow. In one day of moving around in the cool river I felt so much better and after a second day I was about the best I could expect at that time. I believe the moving and digging I do in the river along with the cool water is therapeutic. It is amazingly helpful for me so maybe it can help others.

      Thanks
      Rich

    17. Mari Suriel says:

      I was diagnosed about a year and a half ago. It has been difficult to listen to ignorant people say all of the above mentioned things. The one I hear the most is probably the ‘just take glucosamine/vitamin’. I really enjoyed the replies. Thank you and have a good day. :-)

    18. michael debatto says:

      as an RA Sufferer, I can see, Now, that pain can be so bad as to KILL YOU, or cause you to kill yourself….my joints (wrists and shoulders) are KILLING ME, I think literally.
      My major Bitch is that, even paying for your narcotics IN CASH, no Insurance, ‘They’ just won’t let you LIVE-they denied me filling my MS30mg. ir/#180 at Safeway in Gallup, NM -and been w/them 5+yrs!!!
      And, are no Patient Outrennot kill yourself w/odern engineach or Hospice-Pain programs….wish ‘Dr K’ was still alive to help me with Carbon Monozide Canister-you cannot kill yourself w/modern Truck/2014…I’ve HAD IT!!!

    19. Dorothy says:

      I am 57 years old and was diagnosed with RA about 2 weeks ago. Had my first dose of methotrexate (10mg) yesterday. Will take same dose next Saturday and then double dose. Prednisone has helped tremendously with pain. My ACPA was 255, so Rheumatologist says we have to get to work now to get things under control.

    20. Cyndi says:

      HA! Yeah, I’ve heard 3 of these from my rheumy, and it made me feel like a weak sissy. I would love to change doctors, but the next closest is 70 miles away.

    21. Pam says:

      Has anyone ever experienced or read anything about Rheumatoid Disease and heat intolerance? The last 10 years as my RD has progressively worsened, my ability to tolerate heat has dramatically declined to the point where being outside for the least bit of time is unbearable.
      Welcome any thoughts or responses.

    22. Conrad says:

      The questions that makes me most aghast are (some even from my wife..):
      “are you better yet?”, “when will you get better?” and “when can you start exercising again?”

      Trying not to be sarcastic, my responses include:
      “no not yet…”
      “Oooh, have I died?”
      “when there is a cure”
      “when I die”
      “when i get bionic legs, elbows, shoulders etc..”
      “I am exercising, but it’s nice to be able to walk the day(s) after”

      PS I liked the “hold this it’s not heavy” comment. Found this hilarious recently when given a tray of food to carry…”Oh it’s not heavy, you’ll be fine”…can’t say I didn’t warn them…

    23. Shannon Lockhart says:

      Worst recent comments told to me…..I was told just to “suck it up and live a full life” And I was advised not to take any drugs that might be toxic, and just leave it untreated. So many people just don’t want to hear about it and I struggle with feeling very much alone. I have not been in remission yet, and am hoping methotrexate will be the magic drug. I just want to be an active, energetic, happy mom again…

    24. misty elliott says:

      I have ra and get sick very often from it with pain daily. I never know from day to day whether I will be in bed all day or half way capable. I was sick for about five years before they could even could tell me for sure what it was. even now with drastic weight loss, treatment efforts, physical therapy, remission has not been achieved and I got so sick from the methotrexate and them boosting my immune system last time tried I almost died. that is when they found the lymph node involvement and swore it was cancer a biopsy showed an infectious nature but they couldn’t find an infectious disease for a reason. the first thing I said is couldn’t the lymph node involvement be from ra, they said no this looks like cancer. nine months later the jury is in, lymph nodes are from the ra and now they want to give me the methotrexate again, they say they don’t know what else the lymph nodes could do or damage if I don’t treat, but nine months ago they were afraid to ever again give me chemo or any immunosuppresants. plaquenil helped for a little while but then it hit me full force again, and I lost so much hair and weight from it they won’t give me that again. to tell you the truth I am almost as scared of the meds as I am the disease, but you have no choice but to try to treat or they say debilitate worse quicker but it seems like with or without treatment you feel bad. then there is the fatigue, sickness, chills, flu like symptoms, depression, everything that goes along with this disease and other symptoms that they chalk up to it, even though you aren’t sure that it is from that or not. cancer has been thrown out there multiple times, then they come back full circle and chalk up to the inflammatory disease. then there Is the isolation that happens just from lack of normalcy and people’s ignorance, like phrases like just take antibiotics for a few weeks and itll go away, if that was the case it would have gone away five years ago, because they kept treating me for what they thought was infection initially with wbc being elevated until they finally figured out elevated blood work was from inflammation. then you hear chemo for arthritis? like you are lying! then I have had people who are Christians which I am as well, tell me do you want to be well? like it is a lack of faith that keeps me from healing! people can be so ignorant and cruel! there are no support groups locally, so I need something online. people hear arthritis and think a little pain, they don’t have a clue! I am only 35 and still trying to raise my kids in the midst of it. I cant work. the weather effects it to the point where when weather changes I am sick for days. stress effects it. colds, any new meds put into body like anesthesia, anything new put into body. it is such a weird disease and the emotional toll it takes on me is severe, and then when no one seems to understand, eventhough all you have to do is google the disease and it tells you right there. I have had eye, skin, heart, and lung symptoms already, even muscle. they couldn’t rule out lupus either, since I was seronegative. I developed iritis in the beginning and I am not convinced I don’t have some lymes as well, because lymph node tested infectious and I know enough to know without specialized testing you can test a false negative and I have everything from memory loss to neuropathy to cystitis stomach issues, basically every symptom of lymes there is I have they know I have ra from the mri, but im not convinced that is the whole picture either eventhough that is hard enough. I wouldn’t wish this disease on my worst enemy! yet I know it could always be worse, I could be in ICU battling for my life, so I try to stay positive and always look at im blessed beyond the curse, just wish people would really understand how sick I really am. they look at me and just can’t see how I could be so sick. first off people need to understand something before they speak on it. then they just need to come observe me for even 12 hours and they’d be a believer!!!

    25. Lori says:

      I get bad knee flares, current one has been going from June to present, 7 months so far.

      One gal at work keeps telling me after asking how I am doing, “Well at least you can still walk”. How would you reply to that?

    26. Barbara says:

      I all the time hear, you look very good, it does not look like your in pain, every time I see you, you appearance always looks good. How much pain are you in today, when I tell them how much my joints are hurting, they act like they don’t believe me, all because my outward appearance does not show, how much pain I am experiencing.

    27. Barbara says:

      I was diagnosed with RA in 2001, as time progressed, my RA continue to get worse, some days were good and some days I could hardly move, I started to miss work, and arriving late to work due to the stiffness I was experiencing, it was becoming difficult for me to perform my job, due to swelling of my hands and feet. The flares were terrible, and still is, I get so irritated with people because they look at me and tell me, well it don’t look like your in pain, you look well to me, I knew someone who had RA and you could tell she was in pain, her fingers were all bent in different directions and the toes on her feet were awful, every time I see you, you always look well. And I tell them that I may look well in my appearance but it is not how I am feeling on the inside. This website is great, it has help me to answer to questions what people ask me. I learned a lot on this site, thank you so much for having this website, it is a blessing.

    28. Valerie Qualich says:

      I recently got this comment: “You are just doing this for attention” REALLY! So now when people ask me how I am I say I’m fine.

    29. Charlene Hoscheid says:

      My mom was in her early twenties when she was diagnosed with RA at the time we didn’t realize how serious it really could be 30 years after Her diagnosis her RA attacked her lungs and made breathing difficult. She went on oxygen and even that was getting to the point she was having trouble breathing on her own. She spent nine months in the hospital after having surgery to put a stent in her windpipe to hold it open so she could breathe better. Yet at the age of just 58 she lost her battle with RA. It was listed the top reason on her death certificate, that she died. I try now when I hear of somebody with RA make them realize the severity, it’s not just arthritis. It is an autoimmune disorder not any different, really, than HIV. It’s not a question of IF, but WHEN you will lose your battle.

      • Dear Charlene, I was so sorry to read about your mom. Thank you for taking time to share about her here. It reminds me of something I wrote in my book about those of us who lost loved ones to RA / RD – it is like a special kinship and we understand.

    30. Semeli says:

      Hi,
      Thank you for this post. I am 28 yrs old and was diagnosed 1.5 years ago with RA and get many of these comments, especially various suggestions on what to eat and how to live from relatives, coworkers and friends. It makes me feel guilty, inadequate and upset for them not understanding what the disease means. I appreciate suggestions for answers to these comments!

    31. Minion says:

      Hi Semeli. I m 28 too, was diagnosed at 18. Dont worry, u’ll learn to ignore these people gradually. Stay strong n all the best!

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