When Our Strength Works Against Us
Last month, I called your attention to an article that truthfully presented the reality of Rheumatoid Disease, asking you to thank the site – and many of you commented there. One exchange reminded me of many I’ve seen over the years. Carly made a tricky point that seems like a catch-22 (no-win situation). Norma’s response seems right to me, and similar to what I’ve said thousands of times.
“I really hate to write such a negative post, and feel I’d be misrepresenting myself if I didn’t add that I am actually a very positive person. Although this has taken quite a bit of my spunk, I still do everything I can to enjoy life, I am still strong, I am still generally a happy person, I am still grateful for the things I have and appreciate life. But honestly, I believe this adds to the lack of support I receive. On top of looking fine, I don’t appear to be coming apart at the seams and I hide my pain the best I can, so it’s hard for anyone to understand how much I suffer. Thank you for giving me a voice.”
Norma Martinez: “Carly, I’m learning that a lot of us with RA are amazingly happy and positive people ..why spend our lives miserable, on top of everything else?! But, we need to be able to vent, complain and cry every once in a while, in order to keep smiling and living our lives as best as we can ..it makes it easier when there are others who truly understand.. One day at a time, painful step, by painful step.. 🙂 Peace..”
Think about this: As we fight to “hide the pain the best we can,” and press on to do “everything we can to enjoy life,” Carly is right that “it’s hard for anyone to understand how much we suffer” and “it adds to the lack of support.”In the privacy of my own house, I call the façade of RA, “The LIE.” It’s one more irony of this disease (see list of more, below).
Maybe one problem is the grace with which we fight Rheumatoid disease assures the world that it’s not that bad. The high pain tolerance we usually develop, along with our fighting spirit to overcome the disease and the stoic way most of us hide our struggles all contribute to the idea that RA is no big deal.
Is there a solution?
I want to see a cure and I think that would pretty much solve it. Do we think people would still waste money on studies to prove RA doesn’t hurt that bad? Or make a living writing silly articles that accuse patients of hypochondriasis? No, a cure would pretty much put that to rest.
Meanwhile… here are 3 more ideas while we fight for the cure.
1) Paint a clear picture of disease activity for our own doctors. This might mean taking the gloves off, even though it’s hard. I’m not all the way there yet.
2) Find at least one person that you can be totally honest with about how constant or bad it is. Tell them you’ll ask for help when you really need it and while you don’t want any pity, you need someone to know.
3) Plan to participate in the Rheumatoid Patient Foundation’s upcoming survey with Mayo Clinic to be sure your voice is heard. Together, we will be better understood.
How do you think we can help the world to get it?
More on the ironies of Rheumatoid disease
- A Rheum Full of Contradictions
- “You Look Fine” – a Wall of Confusion Surrounding Rheumatoid Disease
- If the Gloves Come Off, We Might See the Irony of Rheumatoid Disease
- 3 Myths about RA that are Rheumatoid Arthritis Facts
Postblog: You can stay up to date with current RPF events by subscribing to the weekly RPF blog (click here) and the new quarterly newsletter The Shield (click here). To join the RPF with a personal, professional, or corporate membership, click here.
Recommended reading
- Lipstick & Luck: Feeling Fabulous with Rheumatoid Autoimmune Disease
- “Fine Thanks, and You?” and 5 More Stupid Things I Say
- Living with (RA) Rheum Disease Is Already Multitasking
This is so true. I just went through my 7th medication with no success. I have only been diagnosed for about a year and a half. I am waiting for insurance approval to try my 8th drug. Meanwhile I am taking it day by day with no meds. I still work full time as a 911 dispatcher (a very stress free job hahaha)and I am a trainer. I call out sick as little as possible so I do not leave my trainee’s high and dry. I have those days where it is hard to put my feet out from under the covers and walk to the bathroom, much less shower and get ready for work. I live with my parents and do everything in my power not to complain about my pain in front of my mom because I can see it upsets her. I go to work and put on my brave, happy face so my trainee doesn’t feel bad. But I can’t hide the fact that my right hip and knee won’t move, my left ankle is frozen and I walk like a troll no matter how much I try to walk upright. Yesterday at work I kept getting pains in my chest, not a heart attack it is the RA in my intercostal muscles in my ribs. My supervisor (God Bless him) looked at me and said “do we need to call 911? I said no… it’s the RA but I’ll tell you if it’s really serious. Really?! I can barely walk and typing… which is a large part of my job is painful and my chest hurts like hell but I will let you know when it is serious!?!?! Hahaha that is the life of an RA patient I guess. Smiling, staying strong and hoping for the best. Keeping my fingers crossed that I find a medication that will keep me going with less pain and fewer sick days.
Smiling on the outside, trying to stay positive!
Thanks for the ear, the support I find here has been amazing, even if it is only to see that I am not the only one struggling day to day.
Michelle, I was only diagnosed with RA in May 2012, so am a newbie RAer like you, too. Ain’t it fun?? Not! Last year, I had to wear a brace on my left ankle for a while, and after it came off, both of my knees really flared up. I was walking down the hall one day at work, and another employee started lightly singing “Weebles wobble but they don’t fall down.” I wanted to scream! But I ignored her, held my head high as I walked, knowing I probably was wobbly, yet I was grateful to be able to still walk. There are so many rude and just plain ignorant people out there. I should have filed a complaint against that employee, but I didn’t feel like anyone would take it seriously (and in fact, I did mention it our office attorney, and she kind of laughed about it – though I didn’t see a thing funny about it). God bless you – I’ll keep you in my prayers.
Oh, and now my RA doc has me wearing arthritis gloves, the fabric kind (they feel wonderful, by the way). But now I can feel the eyes on me, as if I’m being overly dramatic. Really?!?! They can see my swollen fingers. Do they think they don’t hurt? Ugh. It is all so frustrating.
Carole, my hands sometimes become pretty painful at work when I am typing a lot. Do the gloves help? What sort of gloves do you have?
I enjoyed this article. I feel guilty when I complain about the pain and frustration of this disease. I don’t like to “burden” others with my troubles. Awhile ago I tried to talk to my family Dr and my rheumy about feeling tired of this disease. I told them I was tired of fighting to remain active and tired of being ill, etc. Their reaction? Neither one wanted to hear it. Both docs were not able to say a word of understanding or support. I guess being upbeat and positive was all they wanted to see from me.
Wow this post is so TRUE, it just confirms to me that my pain is that bad im just good at hiding as best I can so as not to seem so negative.good to know im not going mad.
Paula, you indeed are NOT mad – you are hurting. I pray every day that there will be a cure for this maddening illness. My heart breaks every time I read someone’s story here, about their aches and pains, problems with RA doctors, the list goes on and on. My thoughts and prayers are with you and everyone on the site – and beyond.
I can’t agree more… I am just now recovering from a surgery to repair a ruptured Achilles Tendon that I walked on for a full month. I did visit my family doctor three times but was told that it was probably just a case of tendonitis. Finally, my Rheumatologist examined me and ordered an ultra sound which helped to diagnose the “total tear”. Probably my reluctance to complain strongly and admit weakness was a major contributor to the missdiagnosis. Trying constantly to hide the daily struggle with all the physical factors of RA is exhausting in itself. I do not think I am alone when I say that I think there is a stigma attached to this illness that is as debilitating as the disease.
There are times when I want to be ten years old again so I can stamp my feet and cry out loud and scream.. “this is not my fault”
I think secretly we are blames for having Ra.
thanks for sharing Pat. I love that image of being 10 – good description.
Your use of the term “stigma” is interesting. I just saw an email from a woman in India who mentioned the “taboo” of RA and how her family hides hers.
Pat – that’s how I finally got diagnosed with RA. My left ankle hurt and continued to swell. After 3 misdiagnoses, I saw an orthopedic doc who said it was “tibialis tendonitis”. I was home for almost 2 months total. Finally, my family doc referred me to an RA doc who has literally saved my life. I take Enbrel injections once a week with methotrexate, and am much better than I was a year ago. But I still have so much pain. God bless you.
I’ve written about the same issue…its a catch 22. Even my closest friend doesn’t have any idea how bad things get…let alone others. Ultimately I try to remain positive for myself. I force myself to keep smiling, keep exercising (no matter how small) and keep trying new treatments. All of this means I get no support. Its easier to keep quiet than to get the eye-roll and the ‘yeah, I have some arthritis in my toe too’.
My doctor always say that to suffer from this kind of pain for so long can make a person go insane… When I am mad at my kids or wife, I cannot explain each time that it’s part of my pain… Anyway, I hate the questions and the queries: How do you feel today? Is it better? I don’t know how to answer these kind of questions…
Oh, Pat, I’m with you about wishing I could be 10 again and stamp my feet and scream “this is NOT MY FAULT!” This article, as are all of Kelly’s articles, is so to the point. People see me with my makeup on and my hair fixed, so they think I’m fine. Well, I’m NOT! And you can’t try to tell them about your aches and pains because they (most of them) just don’t really care. Thank God I have a dear friend at work who has fibromyalgia who I can talk to and she understands (although I’m not thankful she’s has fibro). I told someone the other day that I wished the parts of me that HURT would glow in neon colors, so people would pass by me and say, “wow! your knees are really hurting you today!”
Ha! I love the idea – and the visual – of all the painful areas lighting up in neon colors. Ah, the sympathy we would get….
rawarrior great post! Thank you for the powerful points
Yaron, I am that way too. I am like the frog in water that keeps getting hotter; I’m slow to recognize when my pain is getting worse. My daughter was the first to catch on. I’m normally even tempered, but pain makes me fretful and irritable. When nothing would please me, she would say she was sorry I was hurting, and suggested I do something nice for myself: a bath, a nap, or pain meds.
The other day I did too much laundry, and became irritated at inside out socks. I recognized the silliness and futility of being mad at clothing, and that my tolerance threshold was down because my level of pain was up.
rawarrior hi kelly! still here trying to live my life the best I can..painful step, by painful step! 🙂 thank you for being our voice!
As all of you, I tried to hide the pain as much as possible, but in my controlling and being tired all the time, my family fell apart :'( My husband has decided to get a divorce because of my “lack of e anissues; he wants to be with someone who can do the things that he wants to do. In my heart I call it selfish,but I don’t want to be with someone who doesn’t understand, he thinks that I don’t push myself hard.enough, or exercise enough. I do what I can and most of the time just make it worse thru my push to cover the pain. In the end, I want to be with someone who cares and tries to understand. Though this has been really hard for me and my 3 kids, as I have not worked in years, the idea scares the hell out of me. I am going to push on, with my head held high because I do have people who understand, I have my warriors 😉 And I only want people who understand and care in my life, I’m not wasting my time on people who are uncaring or selfish. I will grow stronger and my kids and I will be closer, and I have my warriors to stand by me, along with my family. So we push on, and hopefully someday people will understand.
Hi Megan.
I just wanted to say how sorry I am that your husband has decided to get a divorce. Please know that you will always be the wonderful person you’ve always been – husband or no husband, RA or no RA. I’m glad you have the support of other family members and friends. The support of the RA online community is pretty amazing too, eh? Hang in there !! Better days are ahead !
rawarrior Thank you so much for this post. While I wouldn’t give up my “humour” for RAD, sometimes I’d like to show my weakness. #Imhuman
Sometimes it is very tiresome dealing with this disease day in and day out and it is true that no one who isn’t living with it can truly understand how much. I sometimes think that part of our problem is the result of improvements in treatment. Before there was ANY effective treatments so many RA patients so quickly ended up in wheelchairs that the pain and disability was very evident. With improvements in treatment that slow the progress of the disease and stave off that wheelchair, the pain has become less obvious to outside observers. There are those who understand and empathize.
I think sometimes it is much easier to have a tolerance for pain that is of a limited duration. Even a low level of pain over a long period of time is very wearing. It is hard for anyone who doesn’t have constant pain to understand how that feels.
Fortunately, I work with people who accept that I show up later in the morning most mornings; I walk slower and they wait for me or offer to drop me at the door and park the car; I sometimes have an ice pack or a heating pad at my desk; if I can’t get the water bottle open, I only have to ask. They’re good people and I haven’t had any problems. They don’t always understand, but they try.
Great post Kelly and the replies are so understood! I’m not always the best at hiding how I feel and those close to me think I am mad at them when the pain/frustration overwhelm me. I think they try to understand but alas they cannot not because, thankfully, they do not have this disease. It’s just reassuring to know we can come here for support.
Kelly, is that Roo by Kylie’s car? We are Kylie’s fans too!
Sending best wishes and love to all the warriors!!!
Crazy iPad, it should say Kyle Bush’s car…:)
Yes, we are. He wanted to visit the M&M store in Orlando & they actually have that car INSIDE the store. What did you think of the scrap Denny & Joey got into the other day? Since we are from Va. & Redskins fans too, we’ve been Joe Gibbs Racing fans for a while. Visited the plant in Charlotte right before Roo was born.
This newsletter is a sanity saver for me. Everyone says I look good – I use make up to try and make me at least feel like I look good when deep inside I am in pain. I don’t understand when even my doctor says I look better than I have in a long time and my blood work is good, then why do I wake up several times a night with pain in my legs and ankles? Thanks to Kelly and all who contribute.
I too, struggle with this ugly pain every single minute! Every time i see the RA commercials with their smiling patients I want to grow something at the TV! It’s so true that our grace and strength do diminish how folks react to our pain. I’ve heard lots of comments like, ” but you are working, ” or ” it must not be that bad”.
It IS that bad! My fingers hurt as I type, my body hurts as I try to get dressed for work, I can barely move out of the car because I’ve gotten so stiff on the ride to work….and on and on!
As we move through our daily activities’ every action is a chore, a mountain to climb, and obstacle to overcome! Bushing teeth can wear me out, forget styling my hair! Up in the clip it goes!
It is so true that we have to find someone with whom we can be our transparent selves, that one person we don’t have to hide from. I can finally do that with my husband, but that’s pretty recent. Mostly he just “can’t hear about it.” “I worry too much about you all day!”
Those comments used to make me feel like just being quiet, now I know I need to share this pain, to give it a voice, to let it out and make it fly away!
Nicely said, Connie. Thanks for sharing.
Connie, My husband now automatically mutes the commercials for the RA meds. He decided that was better than listening to me yell at the TV. 🙂
Great blog article! I read all the comments and it all sounds so familiar. AND about hiding my pain? They say “the truth will set you free” BUT not for me lately….I have recently suffered a hard lesson regarding sharing information about RA with family…I made a New Years resolution to start an RA blog. Well, it has been put on hold for now….I have to get over my son’s reaction to my desire to start a blog, as well as his rude judgemental comments about my posts that I make about RA. He told me that “the reason my disease is out of control, is that I am not living my life the way God intended me to live it!” AND “he told me that I was wrong about sharing information about my RA and I should keep the information about RA to myself..(NOTE I do not post about my disease constantly) Then he went on and said that ” I should not start a blog because I am making my disease my identity” Well, first I cried…a lot! Then I realized my son was not only being spiritually arrogant, he was WAY of of line to claim I was making my disease my identity. Then I got angry….I called him out on it…and I said….”I pray you never have to wake up in the morning and have to crawl to the bathroom because you cannot walk…..and pray the whole way that you do not piss your pants before you get there” AND I also called him out on the arrogant spiritual comments…..It also confuses me for him to say that I was making my disease my identity…if anything I have been hiding the gory details from family because I was afraid of family reactions. This experience made me HIDE MY PAIN even more than I already do…family reactions have temporarily put duct tape over my mouth regarding anything having to do with RA. THEN…there is also the hiding the pain I was I’m with my own rheum….my rheum doc always pulls the fibro card out, when she feels I jump with pain too much when she does my joint exam. In other words, if I jump with too much pain and there is ” not enough swelling” she calls it fibro…even with a hand exam! I was thinking to myself…hmmm fibro in my hands? Really? Some of the hardest parts of RA, believe it or not, is the reactions from people, and it certainly makes me want to hide my pain,…the comments made by others both friends and family has caused me great pain….but hopefully the duck tape over my mouth will go away soon! This disease has taught me just who you can trust with information and who you can’t. I am by nature a truth teller…but I have learned that some people do not want to hear the truth. SO I have been conditioned by the reaction of others to HIDE my pain, both physical and emotional…I have got myself in the shower and cried so no one would hear way too many times…people just do not want to hear about pain, they would rather me nicely dressed, smiling, and saying oh I am just fine…but my heart knows I am not…
susan, I know how you feel. I find myself avoiding friends and family when I’m in a horrible flare. I am so glad kelly started RA warrior for us all to vent,read, cry and share with others who do understand. I have also been diagnosed with sclerederma, my fingers look terrible, I have more pain. I hide my hands when I’m with friends, I can’t stand any more reactions and diet change suggestions. I sometimes feel that friends and family think I’m faking and am just stupid, too stupid to take care of myself. I was always the one who ate right, exercised, never smoked, grew a garden etc.. how did they all forget?? Now they all tell me things like eat more berries, exercise, blah blah blah. So I now just smile and say I’m doing fine, gotta go.
I was diagnosed about a year ago and I agree with everyone on how our strength is our weakness. I have painful hands, wrists, ankles, feet and now my shoulders and my neck. My rheumy suggested that he doesn’t think I have RA any more because I test seronegative and he thinks because my hands aren’t swollen that they should not be painful. Good grief! I wasn’t aware that osteo arthritis attacked every joint in your body or that it could make someone so fatigued. I keep telling him after he says that he can’t detect any inflammation, that they (my hands) still hurt. His answer? “I don’t see any inflammation.” Like I am MAKING THE WHOLE THING UP!!! I am so frustrated right now and some days in so much pain, that it takes very little to set me off. The other day I started crying because I couldn’t get the garbage bag open. I work 37 hours a week and have to call in sick at least once a month. But don’t worry, I don’t have RA. I am beginning to think there is no such thing as a good rheumy. Thanks for letting me vent. This website is a Godsend.
Too common Marti. I wish people knew how many are in this same boat. Are you able to try another doc at this point?
I have one more option, there’s a rheumy about 60 miles from here. I haven’t heard good things about him either. The thing that bothers me too is, I hope my current rheumy isn’t putting in his charts that he thinks I am a baby. I am certainly not that. I actually thought a couple weeks ago when I saw him that maybe I had hypermobile joint disease. It would explain why 6 years ago I completely tore my acl in my left knee by swaying to music. I have a lot of the signs of it: I have curvature of the spine, I can touch the floor with my palms, and my thumb can touch my wrist (double jointedness is a major symptom). My rheumy said I wasn’t double jointed enough. I said to him it would certainly explain why my joints are getting all loosey goosey and making all kinds of noises (although I guess RA does the same thing). A healthy person with good joints does not tear their ACL by swaying to music. So frustrated right now.
I feel for you Marti. You can request copies of the doctor’s notes and let him know you want to make sure you’re on the same page. Hopefully he would listen. https://www.rawarrior.com/medical-records-tip-for-your-rheumatoid-arthritis-history-read-the-doctors-notes/
Thanks Kelly. As we speak (lol…I’m at work but my boss is on vacation), my right shoulder feels like a toothache. You know what sounds good right now? Sitting in a hot tub right up to my head. When so many of your joints hurt I bet that would feel just awesome. Speaking of awesome, you are exactly that. Thanks again.
This post brought me to tears. I have been struggling a lot recently with feelings of being alone, unsupported, invisible, and hopeless. Living in a tiny city in Montana does not provide a lot of avenues for support (there are zero support groups), so I have turned to the internet to find people who think and feel and speak like I do. What a relief to know I am not alone! Of course my husband and my family are wonderful, but if you don’t have RA, you just don’t understand. Life with RA is just plain horrible at times (man, it feels good to say that!) and it takes great strength to make it through the day in the midst of a difficult reality. So, thank you. Thank you for giving me community and giving me comfort in that.
I just want to again Thank you Kelly for all of your hard work and dedication for all of us warriors. I understand where everyone is coming from. I have had my RA for many years, yet only one test has proven that I have it. The percentage was low but still showed that I have RA. Once you have it diagnosed, no matter how small the percentage is, it just doesnt just go away! Right? Yet many tests, bloodwork, exrays since that small percentage have all been negative. Yet my pain, my fatique, have become worse. Its not everyday-or ive just learned to ignore it, that i dont realize its there anymore, my pain during the days. But sleeping has become a nightmare for me. Back pain, and neck pain constantly wake me. Day time actually for several konths, and i dont mean to contradict myself, but the neck pain and back have at points been unbearable. Pain in my neck and back and hips really have started to scare me. No one believes me, and so i rely on IB profen for pain. One doc said it was fibro and tried me on Lyrica, but it just made me loopy and feel drugged and scared of my shadow all of the time. Now i have a new rheumy this Thurs, and im a little afraid of what she wont find, even though my pain is right under her nose. Frustrated i am to tears.
good luck with the new rheumy Rosy. Hang in there – we’ve heard lots of stories of people finally finding a great doctor that made a big difference.
Ummm, this may sound crazy and dumb, but i just dont know. Is RA in any way simular to OsteoArthritis. All the women on my mothers side all have Osteo, except for myself, and possibly one cousin and my deceased grandmother. What is the differences between the two Arthris? I understand RA is An autoimmune disease, but is Osteo as well?
Hi Rosy, it’s not dumb. The name confuses people and that’s why we advocate saying “rheumatoid disease” instead, because it’s more accurate.
Here’s an older post about the difference between RD and arthritis (what’s now called OA): https://www.rawarrior.com/difference-between-osteoarthritis-rheumatoid-arthritis/
Pretty much everyone has some arthritis, and it’s a process of degeneration that comes with aging or over-use (like pro athletes). The short answer is that OA is not an immune disease.
My husband finally got it when he saw me dragging a chair into the bathroom so I could sit down while I did my hair and make-up in the morning. It was like a switch went on and he understood what it meant when I complained about waking up exhausted and with sore feet.
Hi,
Very interesting post, and so true. Personally, my fear of “complaining” about RA too much is that I don’t want to lose my job. And I don’t want people to face discrimination when looking for a job either. If you say you have RA and your future employer has a quick look on internet, will they hire you?
Of course we need people around us to understand, but there are some RA patients who are quite fine because they respond well to medication, and for them it’s important that people understand that having RA doesn’t necessarily mean you are handicapped and unable to work. It’s a complex question. What is the best way to communicate about RA?
Don’t get me wrong, I do want people to really understand the pain and suffering, but I also want them to understand that it’s more complex than that, and that some people are quite ok despite the RA.
I still work (4 days a week) and it’s a constant battle, and I’m really concerned about how to develop a career when you have RA. On the one hand you need your employer to know about it (it’s kinda difficult to hide), and on the other, you don’t want them to know “too much” (ie: how bad it really is).
I don’t have the solution. What do you guys think about this?
Yeah…so I missed work because of a flare last month. That’s never happened before. I’ve birthed big babies, had two knee replacements, lived through a myriad of other injuries and illnesses and just kept soldiering on because it’s what I do. Until last month.
I am SO TIRED of hearing a few people in my life say, “I don’t know how you do it. How can you keep going to work (cleaning house, doing the shopping, living, etc…)? I didn’t know I had a choice. I only sought treatment for the joint stiffness and pain in my hands when it began to disrupt my ability to type.
Yes, I’m very frustrated right now. I have the genetic markers, but not a positive rheumatoid factor test, so it’s difficult to refrain from feeling as if I’m attention seeking or crazy. I was off plaquenil for three months for medical test/surgical reasons. Back on, now, but still waiting for it to kick in fully. I’m at eight weeks and it’s still not there, yet. And I hurt. And I’ve had to ask my husband to just listen to me talk about what this is doing to me. And I’ve had to ask him and my daughters to do things for me that I’ve always insisted on doing for myself. And, and, and. And I want my life back.
Thanks for giving me a place to express this and for the information and narratives contained within the site.
thank you for sharing Robin. We are so much tougher than they realize.