So Glad Your Rheumatoid Arthritis Is Cured

RA cured hair dryer

“I am so glad to see that you are better now”

I get these comments frequently and I am trying to understand them. Often, it occurs after I have washed my hair. Someone will come up and say, “I am glad to see that you are finally better.”

It is awkward. And so are my reactions.

Should I answer, “Why, yes, isn’t it a miracle”? No, sarcasm is not the right approach.

Should I ask, “Is that your way of saying I look nice today”? No, too rude.

Shouldn’t I say, “No, I do not feel any better; I just managed to finally wash my hair”? Probably I should, but I don’t.

What I do is try to hide my stunned look. I feel embarrassed for both of us. I wrestle for an appropriate response.

Can I tell you what it feels like I hear being said to me? It sounds something like this: Thank you for not acting sick today… I knew you did not have an incurable disease… You can be alright if you want to be….

If I had actually gotten well in some way, they would be words of comfort and encouragement. But, I have very obviously not gotten better. The comments are said as I struggle to stand or walk. It feels like someone is belittling my suffering.

Hard facts of living with Rheumatoid Arthritis

Here are the cold facts: It is so hard to style my hair now that I only do it a few times a month. Hand, wrist, and shoulder dysfunction make mascara and nail polish a rarity too. My appearance has been one of the casualties of Rheumatoid Arthritis. That’s pretty typical from what I’ve observed.

I am doing my best to survive. I am still a woman and my appearance does matter to me. But living matters more.

I got a phone call last weekend while I was working on my son’s birthday cake. It took me almost all weekend to make the special cake, since my hands kept wearing out. The lady who called is a sweet lady. However, after a few moments she said, “Well, I am glad that you are better now.”

Dead silence.

Huh?

It wasn’t my hair. She couldn’t see me, but I had not even brushed my hair that day. I had to save all my strength for the cake. What did she mean? I can only guess. Either she is believing something that she wants to be true or is she sending me a gentle message to stop acting sick. I am still not sure.

I can only say that people have a lot of strange reactions to this misunderstood disease and this is one of the weirdest. Has anything like this ever happened to you?

Recommended reading:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

75 thoughts on “So Glad Your Rheumatoid Arthritis Is Cured

  • June 23, 2009 at 7:00 pm
    Permalink

    I have to laugh at this because it made me think of a woman I know who, when I told her I have RA, said, "That's crppling. One of the Temptations has that and he's in a wheelchair." That conversation happened in Octobet of 2008. Last week she said to me, "Well, that medicine they have you on worked well. How long after the arthritis is gone do you have to be on it? Yes, this is the same woman.

    Reply
  • June 23, 2009 at 7:09 pm
    Permalink

    OMG!Giants fan!
    EEEEeeeeeeeeeeeeech!
    Weirder and weirder, this thing.

    Reply
  • June 24, 2009 at 10:32 am
    Permalink

    People tend to not think before speaking, at least when it comes to dealing with a person and their illness. I get these comments a lot lately. I have taken the approach of just laughing (well, on the inside), because some people just will never understand. But I also realized, that most people, who are the "normal lucky ones", who never have had to deal with these illnesses, would have a hard time walking a day in my shoes.

    On the flip side, instead of a negative comment, I was told that I looked happier and was asked what had changed. Without thinking, I just blurted out "I am not in chronic pain this week". This is a good thing! Wow! You should have seen the look on their face. In retrospect, I should have said something else, but I went for honesty.

    Sometimes, you just can not win.

    Reply
    • January 14, 2014 at 3:10 pm
      Permalink

      I tend to be happy no matter how horrible my pain is…I found it just keeps everything about me at a nice ‘level ‘ playing field… I hurt everyday of my life…and even to myself I say …’what now?? What next!?? OMG!! A different day and a different pain!?! I am so tired of you(the RA)!!’ These or this is my life,so instead of being sad I choose to be as happy as I can be,not only for myself but people around me….
      Many just ask,so how are you today..and I will reply,Ive had better days or its not good,so am honest,but do try to keep a happy front going on……

      Reply
  • June 24, 2009 at 11:04 am
    Permalink

    People can be funny! I have had so many people tell me how good I look. Here I am swollen face, huge weight gain, walking with cane, and I look GOOD? I know, people just don't know how to react.

    Love this post Kelly. Made me smile.

    Reply
  • June 24, 2009 at 11:50 am
    Permalink

    Great idea for a post. I think all of us with RA can relate.

    In my experience, I think that some people think that I have been told I have RA and that I take some 10 days of antibiotics and then its gone. Like it is a virus that can go away!

    But from their prospective I am sure that is really hard to know what to say to people that have such a disease.

    Reply
  • June 25, 2009 at 9:47 am
    Permalink

    This is all relatively new to me…the RA diagnosis, not the pain. Just started taking Plaquenil a couple weeks ago and seem to tolerate it well. I'm not a complainer. My husband truly doesn't have any idea how much I hurt, even though he has seen the medicines (the anti-depressants, NSAID, anti-anxiety, anti-acid, muscle relaxers, etc…)ice packs and the heating pads, the excruciatingly painful shoulders, the buckling of my knees, and the really, really good days, etc… (you know the lists).
    I'm a little afraid and a little bit glad to finally have an answer after 12+ years and about 7-8 doctors making me feel like there's no reason for the pain. Why is it so hard to figure out!?

    Probably the best thing that has happened to me most recently is that his back has started hurting for the last 3-4 days…is that hateful of me to say?? I am a compassionate person who doesn't want him to hurt and I love him dearly and he loves me, but I have no patience in his whining and "borrowing" my muscle relaxers! I told him today to get his own!
    My discovery over the last years is to just suffer in silence unless I need some help because if I announced all my pain I would never say anything positive!
    Thanks for this site…it's been nice to know that I'm not "the lone ranger"! I'm doing a lot of reading and am learning much.

    Reply
    • October 24, 2009 at 4:57 pm
      Permalink

      No, i found out that people do not understand RA, AND the media is part of that, they see on tv take tyonol and feel better but RA is in a class of its own, it is serious and painful and people don’t understand, sorry but as it took my doctor to explain how serious this disease is, and as he learns he will understand,
      My best,
      Kevin

      Reply
    • November 22, 2009 at 1:39 pm
      Permalink

      Jenny,

      So sorry, but I had to laugh when you mentioned your husband’s backache. We had a similar situation in my house. Being a man he complained as though it was the end of the world. Meanwhile I was thinking, “There is divine justice!” From that point on he seemed to “appreciate” what I go through.

      Reply
  • June 25, 2009 at 2:30 pm
    Permalink

    Hi Jenny,

    I am so glad to read your comment! Your story echoes mine in many ways and – more importantly- a hundred others that I have read. doctors who said it's not anything… people don't realize how bad it is… you do not complain… years of undiagnosed pain…

    I hope your husband is helped by his own pain to get a big dose of compassion for you.

    Your "discovery" describes exactly how many of us survive. But, I am hoping we can change that together. No, neither of us will be the "lone ranger" if we can all stand – or limp- together.

    Awesome comment. Thank you.

    Reply
  • June 27, 2009 at 10:05 am
    Permalink

    It is funny how some people can speak first and think second. I had a guy once after not seeing me for a while ask me what I had done to myself. When I explained to him that I have RA he said oh yea my mother has arthritis too. He had no idea what he was talking about. I just had to get away from him before he continued down the uninformed path.

    Reply
    • May 16, 2010 at 12:08 am
      Permalink

      That’s probably my all-time favorite: someone says, “oh yeah, my uncle (or so and so) has arthritis… LETS CHANGE THE NAME OF RA TO NOT INCLUDE THE WORD ARTHRITIS! OMG that totally irritates me b/c it requires an assumption. If someone told me they had AS, or MS, or whatever disease, I wouldn’t assume to know what they dealt with…I’d ask what it was!

      Reply
      • May 19, 2010 at 8:43 am
        Permalink

        Michael, the changing the name thing is a big deal to most people w/RA. I hear it all the time. I think if there were a vote, the patients would change it. But the Arthritis Foundation would never go for that – since the A word that we want to get rid of is in their name. I have one friend w/ RA who keeps saying we “own RA” – not them. Haha.

        Reply
  • June 27, 2009 at 2:26 pm
    Permalink

    Jo-Ann, Ouch!
    :C
    That's what I do a lot too – walk away. I know we have to pick our battles carefully and sometimes we can change someone's mind. But, it's not easy with comments like that!

    Reply
    • June 27, 2015 at 5:23 pm
      Permalink

      Really Awful..that’s what RA should stand for…I have the most lovely friend in the world . But she,like so many…just doesn’t understand the disease ….I was finally diagnosed three weeks ago I told her and kinda believed that she understood !!!
      Two weeks ago I had a nerve test done for carpel tunnel and was told that I will need both hands operated on…I told my dear friend and she seemed delighted
      Saying.”oh that’s wonderful news..so you haven’t got RA at all then . It was just carpel tunnel! You must be so relieved!!”
      I felt guilty having to explain that it was caused by the RA as I limped home beside her?

      Reply
  • September 17, 2009 at 9:14 pm
    Permalink

    I agree that people often say the wrong things when talking to me about RA. I don’t think they’re mean, though. They just don’t know what RA is or how debilitating and painful it is, or that it’s incurable. I sure didn’t when I was first diagnosed.

    So now, when people tell me I look much better, I thank them. After all, that’s a nice compliment any time! When they say that I must be “over” the RA now, I tell them no, that it’s incurable, but meds help me cope. If they want to know more, then I’ll tell them more. I see no reason to get angry at people just because they don’t know what I do.

    Of course, there are people — loved ones, often, unfortunately — who just can’t seem to understand that the pain is real and is as inconvenient and frustration to me as it is to them. In these cases I just stand up for myself. I didn’t ask for this disease. It just is. I try to be honest and do my best to communicate.

    Really, what more can we do? And why internalize mental pain along with the physical pain? Patience, honesty and forthrightness, in my opinion, is much healthier all around.

    Reply
  • October 4, 2009 at 11:17 am
    Permalink

    I know how hard it’s been for me to face and accept the facts of my RA–I probably wouldn’t if it didn’t absolutely require it of me. I think it’s hard for us humans to accept that there are things that can’t be controlled—that sometimes people just plain suffer and never get better, and there’s nothing “to be done” that can correct it, save it, make it stop. I think a lot of insensitive things are said because of this deep insistence in us humans that we can always control life.

    Sometimes, I am rude when people say dumb or rude things; more often, I pass it off. Once in a great while, I can gather myself together to say something like, “Unfortunately, rheumatoid arthritis just doesn’t go away, even though every single one of us wants it gone, of course. But that’s life, isn’t it? And we do our best.” At least, it stops them talking and I feel better for having been accurate.

    Reply
  • October 4, 2009 at 11:40 am
    Permalink

    Patricia,
    Thank you for such an inspiring comment.
    Yes, we would not have faced these awful facts ourselves either if we had been given a choice. RA does not always permit denial.

    And, yes, accepting that we do not have all power is annoying to humans. Let’s all hope that someday we WILL have power over RA in the form of a cure.

    What I am realizing is that we won’t see that day until it is acknowledged that WE DO NOT HAVE THE ABILITY TO CURE RA YET. So, you are doing a service when you speak the truth. The sooner the world realizes that RA is not curable yet, the sooner they will see that a cure is still needed.

    Reply
  • October 24, 2009 at 4:48 pm
    Permalink

    Here is another example i just can”t stand, When i have a bad day people think you are a weather man, oh your hurting so its going to rain? What? i hurt because i have an autoimmune disease that like Pacman they chew away my joints,Why do people think i can predict the weather when my joints hurt, in fact i hurt on a nice summer day, a cool fall night, a sunny day at the beach,i say i hurt today and people say is it the weather? Ifeel like saying are you you stupid? will it rain today,

    Kevin

    Reply
  • December 8, 2009 at 7:18 pm
    Permalink

    I went to my 15 year class reunion a few weeks ago; I haven’t been to ANY of them since we graduated and actually did not even know for sure that I was going to go until about 10 minutes before it started. I’m glad that I went now, even though I was in bed all day the following day! Anyway, several classmates came up to me and the first comment was “I love your hair!”…which makes me laugh because I, in all honesty, HATE MY HAIR. I have kept it short simply because I cannot and do not have the ability to dry it when it’s long (and it was falling out when I was on mtx and again when I was on something else). And I really really really miss having long hair. And each time I heard that comment, I’m thinking to myself: are they wondering about the weight gain? (thank you Prednisone, by the way) Are they wondering about the limp? It was one of those nights where I wanted to wear a button that says “I have RA! Ask me about it!” and at the same time, I just wanted to be the girl with limitless energy like I was 15 years ago…and have long hair again.

    Reply
    • December 9, 2009 at 9:20 am
      Permalink

      Tina,
      Don’t you hate it when people act like you aren’t limping?
      You are so right about the button that says: ASK ME!! Or we should have a really gorgeous shirt with those words on the back… :chic:

      Reply
  • March 13, 2010 at 9:04 am
    Permalink

    I have RA in my right hip pretty bad, So I limp everyday…Everyday people ask me, is your hip hurting today? I tell them yes it hurts everyday…I guess they don’t hear my answer because a few days later “your hip must be hurting again, your limping” I give up and just say “yes”. People don’t understand that when you have RA you hurt all the time in some way…They think its like an old persons arthritis.

    Reply
    • March 13, 2010 at 4:59 pm
      Permalink

      Buffy, I understand what you are saying. I am reading you loud & clear.

      I have a similar problem. Sometimes, I want to ask those I know: “Did I speak German or something? I meant to say it is in every joint all the time, with no remissions or flares. Did you think I said ‘in no joint with every flare’?” :razzmad:

      Reply
  • March 29, 2010 at 10:01 pm
    Permalink

    I am newly diagnosed with RA after having symptoms for a few years that seemed more consistent with Sjoegrens…but paralleling the joint pain, fever and weakness are real flare-ups of inflammatory IBS as well. I am frequently fasting on fruit and vegetable juice as only then do my symptoms subside – and they subside completely. And when I’m feeling better, my family tends to feel that not only have I manufactured the illness and weakness for my own entertainment and convenience, but I actually enjoy indulging in internet research on my fictive ailments. I have so far refused to take anything stronger than Aleve, and prefer fasting & being hungry to the side effects of medications!

    Soldier on!!

    Reply
    • March 30, 2010 at 9:49 pm
      Permalink

      Hi Claire. Have you seen a Rheum. dr. yet? Maybe a family member could go with you & they could get an idea that it’s really a disease & you’re really sick. What kind of medicine are you worried about? There are so many. I understand what you mean. I sit here right tonight w/incredible pain & haven’t taken prescription for pain.

      I hope you’ll check back in a few days – I’ve been working hard on a newly diagnosed Mall Map to make it easier on the newly diagnosed.

      Reply
  • March 31, 2010 at 7:32 pm
    Permalink

    Hi Kelly

    I was diagnosed in December, and then the Dr. moved to Washington DC. She was puzzled because my symptoms are “atypical”. Although I’ve had horrible episodes of joint pain, they came and went until last Fall, when my feet got into the act and the joint pain became continuous. The primary sites are the index knuckle joint, both sides, though much more on the left side, and the corresponding joint on my feet (also worse on left side). But the joints aren’t red or very swollen, and no damage showed up on xray. In December my hips, knees, feet, wrists and hands were involved, and I took prednisone. It helped, but I paid the price when my guts caught fire!!

    The other thing is the stiffness, not so much in the morning, but all the time. I chalked it up to no running, weights or pilates for the past year, so what can a couch potato expect? But exercising is now followed by really exaggerated stiffening and a feeling that I’m “overheating”. Instead of well being, I’m just really sore and exhausted. Where did my endorphins go? This can’t happen. I’ve got to fight this. I’m seeing a new rheumatologist in a couple of weeks. Have you ever heard of Rheumatoid Arthritis being related to a bacterial infection or Candida? That’s one of the prevailing theories. If it’s genetic – my parents are getting off VERY lightly, thank goodness for them. My Dad is having his first twinges at 80+, and my mother had a bout in her early 40s, and then it went away and hasn’t come back. Like you, I have hypothyroidism, and I also have a host of stomach problems which I’m so sick of. My family is sick of my problems too, and my husband thinks I manufacture them by myself.

    I’m worried about all the medicines that suppress your immune system, and make stomach problems worse.

    Reply
  • April 6, 2010 at 9:35 am
    Permalink

    OMG. I sooo identify with this and feel absolutely the same

    Reply
  • May 15, 2010 at 11:51 pm
    Permalink

    very much so, I just don’t handle it as well as you probably. I will start trying to educate the person on the reality of RA (though they have no chance at actually understanding if they are at the point of making those comments). I want to say, “if you don’t know what it is, don’t comment” b/c I understand that those who don’t have it don’t get it, but then just don’t say anything…let it go. They are just so used to their normal lives that they can’t fathom how we can be sick everyday for the rest of our lives?

    Reply
    • May 19, 2010 at 8:38 am
      Permalink

      That is so true Michael, they cannot fathom that this is as bad as it is – and that it has no end.

      Reply
  • June 30, 2010 at 1:14 am
    Permalink

    i hear this a LOT! i literally spend 1-2 hours getting myself presentable to go anywhere socially or important. (and right now, with my right hand–yes my favorite hand!–in a cast, its closer to 2 hours! lol i havent cut my hair because i have more easy styling options with a little length(extremely fine hair, ugh) i have gadgets to help me wash, haidryer stand, etc. and although i’ve been on prednisone for years, i lose weight. i have very little appetite and lots of times eating makes me nauseaus. (but that’s considered ‘good’ in our society. i recall mentioning to my doctor’s nurse as she weighed me once,”gee, i’ve gone from 125 to 119 to 112 in 4 months!” and she goes, “oh yes!that’s terrific! GOOD for YOU!!” lol. i’m 5’4 and 112 is way too thin for me! time to break out the Ensure. just this week, a new phys. therapist told me i didn’t ‘look’ like i had ra….i asked her what ra looks like…i was just wondering if she was complementing me on my hair and makeup, or lack of deformity! as far as explaining to the uninformed, i try to make it as brief as possible and just say i have rheumatic disease. if they ask, then i explain that my immune system malfunctions and attacks random body systems, usually the bones in the earlier stages of the disease, but can also attack heart, lungs, etc. i say its progressive and incurable. if they tell me they know someone who ‘used’to have it and was cured, i usually say, “either they never had it, or they still do”. And i think this disease makes us constantly aware (though its mostly subconscious), that we are damaged goods. ra robs us of so many of the things with which we used to define our lives..our careers, our hobbies, our recreation, our looks, our health, our abilities and potential…things that were uniquely ours. in the process of loss however, we find out who our real friends and family are. you know, the true blue folks who are 110% on your side…i have 3! and in some wierd way we fear that ra will rob us of even those….so we try to not complain, try to not burden anyone and basically try to downplay our symptoms…it takes a long time for those close to us to understand ‘our’ individual disease, and observe how it affects us.

    Reply
    • June 30, 2010 at 9:01 am
      Permalink

      Oh Cindy, you said it so well. I wish that would all fit on a T-shirt. I don’t think it will? 😛

      Reply
  • June 30, 2010 at 11:03 am
    Permalink

    I don’t know exactly how to contact you, but hope this will do. I am new to this site and got it from info on WebMD. I don’t have anyone to talk to & my husband doesn’t really understand RA. I still have too much emotional & physical trauma. I can well relate to all you have to say on this site. Through tears and laughter and all those insensitive others. I finally found someone else who knows and is not afraid to share the RA life with others and I thank you for this.
    Whoever wrote that RA doesn’t affect one’s ability to type as posted on one site clearly doesn’t understand. I had a job and loved what I did and that was taken away. I need a job, but who wants a person that can’t hold onto anything, or stand, or sit or write or walk or type but for very short periods of time. No, I don’t look sick and I don’t even look my age. I don’t feel my age either, but RA has sure messed up my plans. I try to walk like I don’t have pain and a multitude of other things, but in all my pretense, behind closed doors I suffer and then I tell myself to keep doing all that is possible, because there are others that have it worse and I must be thankful for all I can do. Thank you Kelly for being informative and once again for sharing. suzy qt_2

    Reply
    • June 30, 2010 at 1:19 pm
      Permalink

      Hi there Robyn, you can comment anywhere you like here. Unfortunately I understand what you mean about family members who do not understand RA. It does help some to know we are not alone, but many others are in the same boat. It also helps me to know that there are those who DO have understanding family & friends, SO there IS hope! Sometimes, people use the email this post button on the bottom of pages of this website to send a post out to someone. Just a thought if you think they would read it. Thank you for sharing too. 🙂

      Reply
  • June 30, 2010 at 1:08 pm
    Permalink

    It has happened to me hundreds of times. I am hurting somewhere or every where while they are speaking. I certainly will not lie, but I have no clue how to respond. I am fully aware that people get tired of trying to figure out what to say and will avoid you if possible. Since I need a knee replacement and a back surgery along with the daily fevers and every joint taking turns hurting, it is impossible to hide all of what I feel. I usually use a cane, also. I know they mean well, but the daily trials are frustrating. I am sooooooooooooooo happy that God hears me every time I call, which is all of the time. (smile) The only people who know exactly what is happening are the patients. I also have Osteoarthritis. Blessings to all

    Reply
    • June 30, 2010 at 1:23 pm
      Permalink

      I agree Vern. Couldn’t say it better myself. Good luck w/ those surgeries too.

      Reply
  • August 10, 2010 at 4:25 pm
    Permalink

    I wish more people knew and understood what it is like to have RA, OA and Fibromylgia…

    Reply
  • October 18, 2010 at 7:09 pm
    Permalink

    Loved this blog. So sad, so true! My loving son is constantly saying (when I try to explain what may be happening internally) “don’t be so pessimistic. The next medicine you try might work!” It’s hard to be optimistic all the time so I don’t sound like a hypochondriac.

    Let’s see, I’ve been on the max dose of Methotrexate for 10 months. What I have seen is hair loss, lots of nausea, loss of my teeth, lots of mouth sores which make it impossible to wear my new dentures. I haven’t eaten solid food since April. I think back to what my primary care doc said to me in January, the day we determined that I definitely had RA. He said, “I’m so glad we found the answer. This is going to change your life!” He said this with a big smile and I, being the optimist was happy……for about a week. My Rheumatologist keeps saying about the next med, “you are going to feel so much better!” Ummmm, pardon me if I’m not convinced after trying several meds with the same non-positive outcome.

    Yes, it’s hard to be optimistic to please your friends and family.
    Trish

    Reply
    • October 18, 2010 at 9:45 pm
      Permalink

      That is so funny Trish. I went through the same thing with my first doc. Always telling me I’d soon be fine. When the RA only progressed, I finally tried to find a new doc. All I found at first were some bad doctors who told me I was fine / in remission (what I explained in my last video). Finally, my good smart doc now. And now that you mention it, this doc has never given me any pie in the sky baloney. One more reason to call this doc smart. (Did you see my reply to you the other day on another post?)

      Reply
  • January 31, 2011 at 11:01 am
    Permalink

    I have not encountered the exact same words but I get from my mom all the time “You look like you feel better.” And I wonder, exactly which part looks like it feels better, the swollen, red hands or the back, hip and knees that want me to stay in a sitting position all day. I have, however, gotten some pretty ridiculous comments given to me from my co-workers who happen to be healthcare professionals. My personal favorite was, “you don’t act like someone who has arthritis, you know complaining all the time about your pain issues.” I wanted to crawl into a hole.

    Reply
    • January 31, 2011 at 9:56 pm
      Permalink

      It’s incredible how little some healthcare professionals know about RA. I wish I could say I haven’t heard this before. Don’t go in a hole, Shantelle 🙂

      Reply
  • February 27, 2011 at 4:36 am
    Permalink

    I hate to say this because it makes him sound like an awful person but my husband of 1 1/2 years is one of those people who don’t believe in pain and disease. He does not tolerate illness well. For example, he was in a horrific car accident and broke a vertebra in his neck (no spinal cord injury) and was back at work the day after he got out of ICU.
    He sees “my pharmacy” and thinks I’m an addict b/c I have to take all this stuff to get through the day but I HAVE to take all that stuff to get through the day! The days I wake up with severe swelling I do get some sympathy but then 30 minutes later doesn’t understand why I’m not dressed and ready to go to the gym and “walk it off.” Ugh.
    I love him to pieces and I know he loves me but I truly wish he could walk a few weeks in my shoes. Be even better if he could take that walk now considering the months of prednisone have given me such brittle bones that I broke a bone in my foot wearing heels one night….

    Reply
    • February 27, 2011 at 10:21 am
      Permalink

      Hi Anna, I can tell how cheerfully you are facing it all. But it will probably also be more helpful down the road if he does have more of an understanding of RA and your needs & hopefully eventually he will. A lot of us live with spouses who haven’t lived with much pain & don’t have much understanding. I think that’s where a greater general RA Awareness could be helpful too. I hope your foot is better.

      Reply
  • April 22, 2011 at 12:10 am
    Permalink

    I completely feel this posting. I have had RA for 13 years, 10 of which I havebern with my husband. For the first 12 years I had four to five flares a year, I’d rub some dirt on it, and get through my day with few whimpers. Now that I have had a flare for the last year, lost my career, my passion in my career of chemistry, and am still struggling with depression; I can see a huge difference between the way people seen my disease now and then. My JRA is invisible therefore people just don’t understand or seem to equate it with having something like osteoarthritis. Now I walk with a cane and get treated like I’m not long for this world. I understand how awkward it is to interact with someone whose chronically ill or dying, you can be at a loss for words. But not knowing what to say doesn’t mean you have to find anything to blurt from your mouth.
    The human “condition”, I’m slowly learning that we are all guilty offoot in mouth syndrome or diarrhea of the mouth.

    Thanks for sharing! Nameste.

    Reply
    • June 27, 2015 at 5:59 pm
      Permalink

      I saw a gp the other day..He scanned thru my notes and talked about my meds …how they are going to gradually be increased I really went to get a new sick note to hand into work (I’m a hairdresser ) I love my work..but can’t see how I can ever go back to it…I mentioned this to the gp his cheery reply was…”oh yes you will ..as soon as your meds start working..you’ll get you’ll be back to normal ” …who am I to argue with a doctor!? Hmmmm my work are asking when I’m coming back..I’ve been off since February it’s now the end of June and I’m worse now than I was then..I’ve is just even more stressful not knowing what to do about work.

      Reply
  • July 2, 2011 at 4:34 pm
    Permalink

    I think I must be very lucky or have a damn good rheumatologist. When my RA first came on I became a mess very quickly. Couldn’t get out of bed or up off the toilet, frozen shoulders,total exhaustion,hands and ankles swollen so badly they looked like they belonged on someone weighing 300 pounds. Oh, and no insurance-couldn’t get it- even before my diagnosis. Long story short, I remarried, to someone with great group insurance and i went to a doctor then to a rheumatologist. She put me on prednisone for a few months and also methotrexate and hydroxychloroquine. Eventually i went to just methotrexate and hydroxychloroquine. This has been my regimen for 8 years now and I feel pretty good! I am a jeweler and my hands, back and shoulders take a lot of abuse but I rarely have flares. In the beginning I was afraid I was going to have to give up my profession! Why is it i am doing so well and you are suffering so much? Is it luck? Is your doctor giving you the right meds? I worry sometime my RA is marching along but I don’t know it and one day it will be back with a vengeance. Both my older sisters have RA and one has passed away from complications from her RA.

    Reply
    • July 2, 2011 at 4:47 pm
      Permalink

      Okay, so now I know that phrase complications from the disease bugs you, sorry. She died from a heart attack that was part of her RA.

      Reply
      • July 5, 2011 at 6:32 pm
        Permalink

        I’m not bugged by what patients say about it. I want the doctors to get it right. Too many doctors don’t even know that heart disease is usually part of RA.

        Reply
    • July 5, 2011 at 6:43 pm
      Permalink

      I guess you could call it luck, yeah. There are 3 things that affect how well we do or how poorly.
      1) How many joints are affected.
      2) How long or often our disease is active / flares.
      3) How well we respond to dmards.

      That’s basically it. So if you are lucky on all 3, you are very lucky. If you are unlucky on all 3 then you are with about 20% of patients like me. Most people are somewhere in the middle.
      I’m very sorry about your sister and I hope you can continue to have good care. Whether RA attacks the heart is not always correlated to how it affects the joints, so I’m glad you are getting treatment even though your symptoms are mild. i hope it stays this way for you.

      Reply
  • July 3, 2011 at 11:50 am
    Permalink

    People that know me have recently been saying “you’re walking much better”. I’m actually glad, because I really am walking better. I have been on Methotrexate for 2 months and have been slowly reducing Prednisone intake (now down to 2.5mg/day with no flare-ups, something I could not do before the Methotrexate started working). Prior to getting diagnosed with RA in Feb/March, I had a terrible flare that advil did nothing to reduce the extreme pain (getting up out of a chair was EXTREMELY painful). Before getting referred to my Rheumy, I was given a trial pack of Celebrex, which also did nothing to reduce the pain.
    I feel very, very fortunate that I am able to walk, especially reading about what others are going through. Stairs (especially going down) are still a problem. Sports activity is of course out of the question, and I still massively oversleep on weekends to compensate for the workweek. At my most recent appointment, my Rheumy said when fall (colder weather) comes in a few months we’ll know for sure if the Methotrexate is really working.

    Reply
    • September 14, 2011 at 8:38 pm
      Permalink

      I don’t know how many times I’ve had to explain the difference between OA and RA to family and friends (lucky me I have both) I have been on many different meds – started w/Arava, added methotrexate, then Humira, now I’ve been on Remicade w/ methotrexate “on the side”. People ask how long will I have to be on Remicade (already about 5 years every 6 weeks) my answer- till I die or it quits working and then I get the fun of trying something new. Sometimes people say they are amazed at how upbeat I am and how well I handle having RA – they must have caught me on a good day or a REAL bad one where I truly “Grin” and bear it. My hubby knows it’s going to be a bad day when I complain that my toes are hurting

      Reply
  • October 6, 2011 at 2:17 pm
    Permalink

    like so many of us, I get so tired of even trying to respond to people who say “oh you have arthritis? you’re too young for that.. my grandmother has that in her hands too.. do you take celebrex(insert new arthritis med here).. You’re looking much better today!…” Aargh! How in the world do you say yea, thanks but really I can barely stand, sit, get out of bed, lie in bed, etc because I’m in so much pain? No, my hands aren’t deformed, they are swollen in the mornings and I don’t look like a “typical” RA person- but who does? Even family members don’t acknowledge I have RA- they think it’s fibromyalgia (still serious!) but a different disease process. I don’t have muscle pain- I have joint pain & no, it is not manufactured in my head! The hysterical pain syndrome people like to comment on when you are feeling better (or worse) when they can’t see your pain is part of the frustration of trying to explain & educate people on RA. I try to stay optimistic & minimize my pain/complaining etc to my loved ones & especially friends- I hate being the downer all the time! I appreciate that I can be honest about my feelings & pain on here & find myself nodding my head & saying “oh my goodness yes” more times than I would like to- Not to mention the tears & heartache from the comments – what right do i have to complain when others have it so much worse than I do? God bless you all & thank you for sharing & for allowing me to vent/share as well

    Reply
    • October 6, 2011 at 2:23 pm
      Permalink

      Sorry – I am in a brain fog most of the time & if it seems my comments go off in a different direction -> they do! Now i can’t remember where i was headed when I started the first part of that.. maybe later. Another thanks to RA – the list is getting a little too long!

      Reply
  • January 24, 2012 at 9:08 pm
    Permalink

    I am typing through my tears. I have been sick two years now, diagnosed and trying different treatments for one year, and I am overwhelmed at the amount of “not getting it,” even from family and close friends. Why did I get a pixie cut (the only cut I can take care of)? On days I manage to put on make-up– “oh you’re all better now.” My cousin referred me to a website for bad housekeepers! (Maybe she could lend a hand!) Even treatment with methotrexate, which I recently started– “oh, it’s only a low dose, and you don’t even get a shot! It’s not like cancer treatment!”
    I am a single Mom and work full-time. I am heroic! And the feedback I get is that I’m a slacker and a whiner!
    Thanks for letting me vent. And thank you for this website. You are keeping me sane 🙂

    Reply
    • January 24, 2012 at 10:29 pm
      Permalink

      a single mom w/ RA and you still work full-time? YES, you are heroic!!
      I hope the methotrexate helps you feel stronger soon.

      Reply
  • January 26, 2012 at 7:33 am
    Permalink

    If it weren’t for this website I sometimes wonder if I wouldn’t give up on trying to fix or help my body. I’m not a depressed person. I have many hobbies and interests but the subtleties of this disease, it’s variations work heavily on my mind. I like my new rheumy. I truly believe he is trying to help me. He is kind, patient and caring. But living with this disease challenges my confidence. I’m not the typical patient. After 10 years with a high sed rate, the medicines have brought it down to normal. Am I cured? My GP acts like it and proudly announced how easily they fixed me because my sed rate was down. Is that the only measure of disease activity? I still hurt and the pains are getting worse; new joint issues are cropping up and the swelling getting worse. Is the diagnosis wrong; am I just not the typical patient? Almost daily I look at my xrays for validation of the diagnosis, for there right on the film all the bones of my feet and my fingers and my shoulders show little Pac Man bites; dozens of bone erosions; the type that are specific to RA I’m told.

    Reply
  • April 19, 2012 at 12:51 pm
    Permalink

    I get this all the time! I was diagnosed with RA shortly before my 20th birthday, so people don’t believe that I can have arthritis. It makes me so angry that people brush off my disease because I am young and active! I am very fortunate to have found a treatment that keeps me relatively symptom free, but I still have my bad days where I can’t even get out of bed.
    When people say stupid, uninformed things to me about RA, I educate them! Not in an angry or rude way (although sometimes I want to), but I make it clear that RA is no joke and I’m going to deal with it for the rest of my life. Just because I have a well controlled disease does not mean I am not sick or that I haven’t suffered!

    Reply
  • June 26, 2012 at 1:58 pm
    Permalink

    I wanted to thank you for a picture you published awhile ago. I was diagnosed with RA which answered questions I’ve had about my unexplained childhood pains. The picture I believe showed you in the middle of a flair and it seemed before that I was the only one on the planet that it happened to.
    Ron Plowman

    Reply
  • June 26, 2012 at 2:31 pm
    Permalink

    I have had RA for 23 years, and it’s an odd thing, but sometimes I am happy that my hands and wrists have started to look deformed over the last 5 years or so, because now people believe me that I am in pain.

    Reply
    • June 26, 2012 at 3:08 pm
      Permalink

      I’ve heard that so many times, Julie. What a sad state of affairs that we’d rather have the disease “show” in permanent ways so we can be believed. I don’t think other “invisible” conditions such as migraines always have this problem. There’s so little awareness of Rheumatoid.

      Reply
  • June 26, 2012 at 5:49 pm
    Permalink

    My rheumatologist has a fascination with my swollen wrists. He can’t wait to squeeze them and then he says that will never go away. On one occasion he had a visiting doctor with him, whom he did not bother to introduce, I saw her name tag, and he said you need surgery on your wrists befor your tendons get destroyed. He has never said that before or since. I felt like the magician’s assistant on a tv show because he was acting like the efficent physician for his visitor. Normally I get five minutes with him and he says okay go get your infusion. He acts like I am stupid if I ask him a question. I should remind him that I didn’t go to medical school. I would look for another doctor but I like his staff and he is ten minutes from home and it is just another complication to change docs. I think rude doctors are just as bad as insensitive people. Am I the only one with this problem? Thanks to you, Kelly and all the other RA Warriors who make me feel like I am not alone.

    Reply
  • June 26, 2012 at 11:52 pm
    Permalink

    OMG – THIS IS ME!!! I am a newbie with RA – only diagnosed about 2 months ago. I’m 49, and feel like my life is ending.

    I have tried to explain RA to my boss, and the fact that RA is NOT curable. I will live with this the REST OF MY LIFE. She still seems to take I’ll just take a few pills and be all better!! Geez. And this is supposed to be an intelligent woman. She is our HR Director. God help us.

    But, yeah – this article IS ME – 100% plus!

    Reply
  • October 5, 2012 at 3:36 pm
    Permalink

    I have to admit that when I get the ‘you are looking good’ comments I just say “this is better living through chemistry, you would not believe the pills I have to take to look this good’ LOL\

    I am on of the lucky ones, I have a husband who is an RN and very understanding. My sisters on the other hand I am ready to slap (or I would it I wasn’t sure my wrist would hurt”

    Reply
    • October 22, 2012 at 4:13 pm
      Permalink

      I just stumbled across this and found so many similarities to my life. It took me years to get even my wife to understand what I live with, friends and neighbors still have no clue. I have had people argue that I am imagining symptoms, to the point that it really affected our friendship. I’m moderate to severe, diagnosed after a long term back and forth with docs at about age 41. Till then I was a strong, active very physical male. I like many on this group also felt like my life was over, until I decided that it wasn’t. I’m fortunate to have fallen in with excellent medical help and my wife now understands, though she has to be reminded, but I also find that I need to tell her sometimes because this disease does not always appear evident to people which is the hard part for them to understand. I just plug away, educate those I care enough to let into my world, and pray for the day when I can leave this crap under a rock somewhere, and go forward free of pain, stiffness and the rest that comes with it…

      God bless all of you, sufferers, and friends alike…

      Glen

      Reply
  • November 1, 2012 at 1:56 pm
    Permalink

    I was diagnosed with RA 8 months ago, and I decided then not to tell anyone. This is the only way I can avoid the ignorant people, who do not know or care to know, anything about RA. With medication I am able to go to work and pretend I have an almost normal life.

    Reply
  • November 29, 2012 at 7:22 pm
    Permalink

    I seem to be isolating myself more each week. Most people think I should be FINE now, I’ve gone to the doctor and am on meds. The meds are making my joints feel some better, but you all know that’s only a small part of this awful disease. I stay so tired, and am getting worried about what will happen when I try to get a job soon. I have been volunteering for several months, at a state park,but I really need to get a job to pay for meds. Do I say “I have RA”, and lose any chance of getting a job, or not tell and risk getting fired for not being able to do the job when I flare. I look normal, I wish life were normal.

    Reply
  • November 29, 2012 at 7:24 pm
    Permalink

    Jan, I like your comment, I wish I had never told anyone I have RA, Most people make me feel like I am crazy, not sick.

    Reply
  • November 30, 2012 at 11:44 am
    Permalink

    Thanks to one of my other autoimmune disorders (alopecia universalis) I no longer have hair to worry about. Other things though, like dressing and putting on shoes are a challenge. My sister is one of those people who thinks I’m better when I can dress a little more nicely.

    Reply
  • December 29, 2012 at 2:05 am
    Permalink

    Well, it’s been 11 years for me and I’ve run through the whole list of meds. I pretty much diagnosed myself before seeing my GP and had to wait four months to see a rheumatolologist in a city 4 hours away. The first fellow was a “quack” who spent more time telling me that I needed to be on reliable birth control while on methotrexate than he did on anything else. He actually checked my axillary lymph nodes (armpit) while I was wearing a shirt, a sweater and a jacket!

    Rheumatologist #2 is a visiting Dr. from a larger city who comes every 6 months to see patients so each trial (and error) is at least 6 months long. It’s criminal the pain that I had to endure (and of course the permanent damage to my hands and feet) and the hoops that I had to jump through to finally get on Enbrel which worked until recently. This Rheumatoligist is pretty much universally hated by his patients due to his dismissive and condescending manner so I am basically just drug seeking when I see him.

    I am a Realtor & had 2 young kids when diagnosed. I didn’t talk about the RA at all and I actually found that helped. A few that did know would say things like “I have arthritis in my big toe” or “you need to try such & such diet”. If people in our town asked why I always wore Birkenstocks I just said that I had “very unhappy feet”. Needless to say, dressing professionally while wearing Birkenstocks is futile so I developed my own style (both in dress and as a high tech Realtor), ran my tail off working 12 – 15 hours a day when the markets were super hot, volunteered at my kids’ school, never missed a dance performance, soccer game or ski competition and collapsed at home until my calendar said that I had to be somewhere else. No energy for a social life at all. When I look back at it, I can’t believe what I was able to accomplish by refusing to listen to my body or talk about the pain.

    I think the social isolation (even when the Enbrel was working) is the worst part. I live in a very active small town that absolutely revolves around mountain biking in the Spring, Summer and Fall and skiing in the Winter. If you don’t participate, you are not included in any conversation or social activity.

    My husband is great for the most part and does a lot of the cooking and cleaning. He doesn’t fully get it (because I won’t talk about it I guess) unless he can see the swelling and sometimes if I want to do something that he doesn’t want me to do he’ll say “what about your hands and feet” yet I don’t see him doing all the grocery shopping and carrying two 4 liter milk jugs in each hand from the car into the house every time.

    So here I am “failing at Enbrel” as my not so sensitive Rheumy says, upping the methotrexate and NSAIDs, contemplating Prednisone (but scared of the side effects), waking every day with a different swollen body part and feeling more socially isolated (and grumpy) than ever. My kids are now 18 and 20 and the Real Estate market is soft so the demands on my time are far less than they were but I often wonder if the insanity (and having no time or desire to listen to my body) is what kept me sane for the past 11 years.

    Reply
    • December 29, 2012 at 9:42 am
      Permalink

      I want to thank you Mary for giving such a well-told account. Your experience has several threads that are extremely common to this disease.

      You’re right that doing as much as possible to sort of “ignore” our condition is one of our most useful methods for coping with the years of pain & progressing disease.

      Are they planning to help you find another treatment that works for you again? Living without one is so harsh and while it can’t be helped for over a third of us who are “non-responders” (ie: “failing at all”), there is NO excuse for them not trying every option of combination in order to help you get relief.

      Reply
  • May 16, 2013 at 4:11 pm
    Permalink

    Day 2 for me……..This is what I have to look forward to? Oh lord help the world!

    Reply
  • September 16, 2016 at 2:58 pm
    Permalink

    Well its 2016 and most people react the same. The other day I just pulled up my shorts and showed a friend my injection site bruises – yep that’s why I seem better- but I’m in pain everday and somedays are better than others. A big “OH’ then proceeded. I said there is NO cure this is my life now. Guess what? Silence.

    Reply
  • September 16, 2016 at 3:03 pm
    Permalink

    Wow, this really hit a nerve! I think one of the worst things about RA/RD is that it is “invisible” for the most part. You don’t have to have “deformed” hands etc to be in excruciating pain or to suffer from debilitating fatigue.

    I have had Sjogrens (eyes/mouth) for 20+years and had to quit my beloved contact lenses that gave me crystal clear vision for glasses that always seem smeared and cloudy. Not a huge deal but annoying. 8 yr ago I started getting bad hand pain and trigger fingers. I soldiered through my quasi-judicial gov’t job and thru my experience, knowledge and good reviews was able to move into positions that required no travel without having to use the “accommodating/disabled” card (the bosses hate us using that) I was lucky to work for a compassionate boss who protected me when I was less productive and found tasks that used my knowledge without taxing my joints. One week I had to take prednisone…soon after I was diagnosed but it was for asthma. I had been saying to physio/rheumy that I was “fine’. After a week on pred I knew I was NOT fine. Even my boss asked WTF? I had produced more files in one week than in the entire previous month! I told him it is the meds….he said I even walked different and I didn’t “groan” when I got out of my chair.

    It was a revelation and it made me more demanding of my rheumy…eg: I am NOT fine.

    Back to the post though….apart from that boss and my immediate friends who covered for me when I went and lay down in my car for a 20 min nap and saw how I struggled…colleagues and managers really didn’t notice and sure as hell didn’t care. I saw the managers of that department deliberately assign a desk far away from the ladies washroom to an MS sufferer, hoping she’d quit. We had a toothless union.

    I worked there 22 years and when I went back to work after having torn tendons in both shoulders(was denied disability as I could sit at a desk and type they said)because I could no longer afford to stay home with no pay. An “assessment” was done and I was back at work on “reduced” duties. With all my prior experience and education they gave me documents to scan, photocopying and saving documents on the computer. Fine…I thought if they want to pay me my salary to do clerical…fine. But then I noticed my new boss was at my desk at 8am each morning to ensure I wasn’t late, she was critical of how I scanned documents and saved documents. I was watched like a hawk. I developed trigger fingers and thumbs on both hands but they wouldn’t revise my duties as the “assessment” done three months previously made no mention of the issues with my hands. Their 3 month old assessment over-rode my own doctor’s advice. There was so much hateful behavior from managers/staff I had known for years that I finally threw in the towel and took early retirement. I had wanted to work another 3 years in order to have full pension and with all the bleeding in the organization from people who had retired or will retire soon I could have helped immensely with succession planning and training but no! They wanted to make a point. At this point my ankles were always swollen, I had gained 40 lb (on a 5ft tall frame!)and the fatigue was mind blowing.

    It was so hurtful to see that people thought I was “getting away” with something. The company doctor who did the assessment even said when he saw the ultrasounds that diagnosed the tears…”Well you certainly are not malingering”.

    I think education is the answer but how? Every time I tell someone what I have and they comment about their sore knee or Grandma’s “rheumatiz” I want to scream.

    Well done Kelly! BTW 7 months on from retirement I am getting sufficient sleep, taking a gentle rehab/exercise class at a senior centre (I am only 57) for my shoulders and getting on with it. But I do resent being forced to retire before I was ready.

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

“imaware™

    Welcome to RA Warrior!

    Welcome

    Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Disease. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.

    Advertisement

    View more gifts at Zazzle.

    Let's Pin Together!

Would You Like Free Email Updates?
Stay in touch with RA Warrior.
We respect your privacy. Your email address will never be shared.