Skip to Accessibility Tools Skip to Content Skip to Footer
Pain and Silence

Pain and Silence

Anyone who knows me would say I talk a lot. I’m friendly, loquacious, extroverted, and open. I always received full participation points in every high school and college class I took, my hand shooting into the air when a question was asked or a debate initiated. I have in-depth discussions with people I’ve just met and three-hour phone conversations with old friends. At a party or community event it can take me an hour to make my way across a room, so frequent are the chats I have along the way.

Unless, that is, I’m in a lot of pain.

Pain: A personality changer

Most people wouldn’t relate their core personality traits with the level of pain they’re in, as most people don’t experience high levels of pain on an ongoing basis. However, living with rheumatoid arthritis (RA), I am always in pain. On a good day, there is mild achiness in my joints that I’m able to push outside of my focus. During a flare of symptoms, the pain can be so intense I’m unable to make a movement without keenly feeling the weight of gravity on my aggrieved body. Just as my levels of pain, inflammation, and fatigue vary according to the whims of RA, so too does my talkativeness.

When I’m in pain, my extroverted nature folds in on itself. I cease seeking the energy I get from being around others, instead reserving the dregs of fuel remaining to tend to my body. I want to be shut away from others, buffered and separate. The social butterfly I typically am seeks a return to the cocoon. Pain changes my very nature.

Socializing during a flare

Recently I had the opportunity to spend time with two college friends I rarely see, one of whom lives on the other side of the country. I didn’t want to talk about the flare I was having and how much it hurt to move, to sit, just to be. I wanted to instead focus on catching up on their jobs, children, and current interests. However, avoiding discussing the flare wasn’t making it easier to talk about more pleasant subjects. I tried to summon up the energy to follow the conversation, make at least a few contributions, and ask questions about their lives. However, my brain felt wrapped in fog and gauze, my focus kept shifting to how much I hurt, and I felt zapped of all energy.

After a while, the difference in my demeanor became obvious to my friend, who asked, “Are you okay? You’re not talking very much.” I briefly explained that I was having a flare, and then returned to following along their conversation. With RA being an invisible disability, my old friends weren’t able to readily tell from my outward appearance that rheumatoid arthritis was heavily impacting me that day; however the change in my personality and behavior was a telltale sign to these old friends that something was wrong.

In situations where I’m in pain and in the company of people who don’t know me well, such as colleagues and acquaintances, they may not notice a difference in my demeanor. I worry that they’ll mistake my pain-flattened affect as a flat personality, not knowing that it’s really due to contending with pain. At work, when pain initiates reticence I worry this will be mistaken for a lack of expertise or passion about my work. Long term, I’m able to be excellent at my job. However, if you catch me on a bad day you may think I’m mediocre, solely because I pull into myself when I’m in pain.

When I’m feeling this way, I’m reminded of the typically friendly dog who, when injured, goes to a quiet corner or under a porch to nurse its wounds. Although my urge to retreat is as temporary as the flare, life’s responsibilities don’t always allow me to take the solitude I crave until my symptoms have eased. Rheumatoid arthritis takes so much away from us. Stealing away our energy to talk, engage, and be lively with those around us, this disease can, even if temporarily, change our very natures. This disease can literally take the words right out of our mouths.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • JBehr
    1 month ago

    Unfortunately this happens to me also. It is very frustrating because those who dont know me or what I deal with think I’m just whiner or attention seeker. That couldn’t be further from the truth. I feel like a burden to others. Now I know I’m not but it sure feels that way.

  • Kelly Dabel moderator
    1 month ago

    Thank you for sharing JBehr. You are not alone here. I hope that this article was helpful and encouraging to you. Please reach out anytime, we’re here to support you. Best, Kelly, Rheumatoidarthritis.net Team Member

  • Warriormom
    3 months ago

    I have just recently found this group and I am so thankful! I finally have someone who understands. I was diagnosed when my oldest child was three months old. He is now 22. I have been blessed to have had very minimal issues until my youngest was 16. I was able to essentially raise my children before my life revolved entirely around RA. I find that stress is my biggest trigger. My job is stressful by nature. I am an insurance Claim Specialist. This job is stressful just by the nature of it but about four years ago the nature of the company changed drastically with much micro managing. It now takes everything I have to get through the day. I have no quality of life. I work during the week and spend all week sleeping. This article nails exactly what I feel and go through. I have been with my company almost 30 years and have had the conversation with my immediate manager about RA, she doesn’t care, and her manager. He understands when I a having bad days and the anxiety that goes with it. I apologize for the rambling but i am so excited to find people that are going through the same things I am.

  • Tamara Haag moderator author
    3 months ago

    Hey Warriormom,

    I’m so glad you found our group and that you are finding it helpful and validating! I’m sorry that you are having such a rough go of it. I certainly understand what you mean about low energy and about having a supervisor who doesn’t understand (fortunately that is not my current situation, but I experienced that in my previous job).

    As you mention stress being such a trigger for you, I thought you might find you relate to these articles I wrote, as I too find stress to be a major factor in my disease activity level: https://rheumatoidarthritis.net/living/stressing-about-stress/ and https://rheumatoidarthritis.net/living/like-gasoline-on-a-fire/.

    Here’s another article about fatigue: https://rheumatoidarthritis.net/living/tired-of-tired/.

    We’re glad to have you in our online community! Please continue to reach out any time you have questions, comments, or experiences you want to share, or if you just need to vent. We get it! And when we share our stories, we all feel less alone.

    Wishing you comfort and better days ahead,
    Tamara

  • HeatherAnnie
    3 months ago

    Tamara, thank you for this article. I am new to RA (11/18) and find others are able to capture how I feel better than I can. Please keep sharing you strength and experience. It’s the kind of remedy money can’t buy.

  • Tamara Haag moderator author
    3 months ago

    Hi HeatherAnnie,

    Thank you for your kind words! I am feeling for you, as I will never forget how I felt after my diagnosis, even though it was almost 19 years ago. There was so much fear and worry. I have certainly had plenty of bad times since, but there’s something about the first year after diagnosis that is particularly challenging as one assimilates this information and processes it in a “new normal.”

    Please know that we are here any time you have questions or concerns. Thank you for being in our online community!

    Gentle hugs,
    Tamara

  • starscream
    4 months ago

    Have you noticed if some RA medications change your personality? Prednisone made me furious and violent. Cortisone makes me distrustful. If I’m ever on either I have to take a sick day from work and lock myself up alone. So I avoid both medications as much as possible: always trying first claritin then cortisone cream then a cortisone shot right into the joint before anything stronger. If I take a 6 day pack of prednisolone I am cautious with people on the first few days. Worst of all is the depression I get during a brain fog or while withdrawing from prednisone. I remind myself again and again there are good days coming. But sometimes I just cry. I have to be careful not to do something irrevocable like quitting my job. Luckily my boss considers me valuable enough that if I do quit he’s likely to request I take a short vacation and just come back. He doesn’t even know I have RA but he senses I get stressed out and overtired from working too much.

  • Richard Faust moderator
    3 months ago

    Hi Starscream. Sorry you are having mood issues. There is absolutely a history of RA impacting moods and cognitive functioning. One of our contributors goes into some detail on the science here: https://rheumatoidarthritis.net/living/just-head-impact-ra-mental-functioning/. There is absolutely the potential for medication to also have an impact and your doctor should be able to give you more information and work with you in that area.

    Concerning communicating with your boss about your RA, I just wanted to follow up a little on Tamara’s comment. As she said, if you have a good relationship and trust your boss, a discussion could be helpful. Of course, the decision on how to handle the work situation is yours. Only you know the dynamics of the office and the individual relationships. In this article one of our contributors looks at the question of what to tell others, including in the workplace: https://rheumatoidarthritis.net/living/what-tell/. In addition, this article compiled thoughts from the community on how much to share: https://rheumatoidarthritis.net/living/community-thoughts-how-much-to-share/. Hope this information is helpful and please feel free, if you like, to keep us posted on how you are doing. Best, Richard (RheumatoidArthritis.net Team)

  • Tamara Haag moderator author
    3 months ago

    Hi starscream,

    Thanks for sharing the challenges of emotional side effects you experience. You may relate to some portions of this article: https://rheumatoidarthritis.net/living/the-predni-zone/ . . . and I imagine you would have some emotions to add to the list!

    I’m glad you are valued at work. Do you think disclosing to your boss about RA and the side effects of the medications that you sometimes have to take might help you both when you do have to miss? I know disclosing this at work has pros and cons, and every person’s situation is different. It’s possible that having a better understanding of what you’re experiencing, that it’s so much more than work stress, could be helpful. But of course not everyone is understanding about chronic health conditions.

    Thank you for sharing your experience with us!

    Wishing you all the best,
    Tamara

  • beckyw
    4 months ago

    Don’t no about you guys but when people ask how I am , I just say I’m ok as I feel like I’m on a record of repeat! I’m sure I must get on certain friends / family nerves as I’m always saying I don’t feel great! It’s sad but I feel like that’s all my conversations are about ! Sometimes I feel I get funny looks from people as the don’t understand when I say I’m in pain ! So hard so I just keep it to myself now. X

  • Tamara Haag moderator author
    4 months ago

    Hey beckyw,

    Yes, I do understand what you mean! In fact, I have an article that will be published in upcoming weeks entitled “‘How Are You Today?’ and Other Hard Questions” that addresses some of that. Here’s an article I wrote a few years ago about the discomfort when people don’t understand what we’re going through: https://rheumatoidarthritis.net/living/the-divide/

    You are right that not only can the pain of RA/RD cause us to be silent, but so can the fear of being a pain in the neck! Yes, it would be convenient if we didn’t have our complaints, but no one would like the source of our complaints to disappear more than we would!

    Please know that we get it in this online community, so continue to share any time you feel inclined.

    Gentle hugs,
    Tamara

  • B.Hughes
    4 months ago

    I can relate to this article. On my bad days I just want to retreat to my bed and not have to talk to anyone or have to deal with anything . I’m kind of a quiet person anyway .I would love to be a more social person but when im in pain it just comes out as complaining . People just don’t understand . They see us trying to function as a normal person but in reality we just want to scream.

  • Richard Faust moderator
    3 months ago

    Hi B. Hughes. I think a lot of people in community have the same issue you do with not wanting to be seen as complaining. It really is a difficult question of how much to share and with whom. In this recent article our contributor Angela looked at some thoughts on complaining and tips from a psychologist on how to complain productively: https://rheumatoidarthritis.net/living/complaining-sharing-with-others/. One key component is certainly to know your audience. On that front, know that you are always welcome here to discuss and even vent. Best, Richard (RheumatoidArtrhtis.net Team)

  • Tamara Haag moderator author
    4 months ago

    Thank you for sharing, B.Hughes! Yes, I completely know what you mean, just wanting to be alone in bed away from everyone and everything. I appreciate you sharing, as it helps us all know we’re not alone.

    Gentle hugs,
    Tamara

  • lanikai13
    5 months ago

    I had the very problem at my job. I am an educator, when I was 1st diagnosed the doc had a hard time finding a medication that worked. I was in constant pain and fatigue. This left me in a fog now and again.

    People around me “tattled” to my principal. I found myself moved to a lower class level. No one asked me if that would help, just lets get her out of there.

    It was embaressing and humiliating. Yup, people don’t get it.

  • Tamara Haag moderator author
    5 months ago

    Hi lanikai13,

    I’m so sorry you had such a horrible experience. That is awful. I work in education as well, and I just read an article yesterday about discipline and how students are rarely asked what will help; in turn much of the time the consequence is a punishment that doesn’t meet the student’s underlying need, improve the student’s situation, or change behavior. I thought of that when I read your post, even though you are an adult who would be far more able to speak to your needs than a child could, because there is so often a top-down approach in education where the one at the top “knows best” and doesn’t try to get at the underlying needs of behavior. The result is alienation.

    Had your coworkers and principal talked with you, I’m sure a much better solution could have been determined. Perhaps they could have decreased your work load or you could have taken a temporary leave of absence until you found medication that worked for you or been moved to a co-taught classroom. Regardless of the “solution,” having some say in what happened with your job would have felt far more dignified than being treated like a child in a way that educational experts say we shouldn’t even be treating children!

    Thank you for sharing this painful story. It brought back a bad experience I had with a principal (I reference it briefly in this article: https://rheumatoidarthritis.net/living/disabled-hear-roar/), and I know other people in this community have had bad RA-reactions from supervisors and colleagues. It does help to know we’re not alone, so thank you for sharing.

    Thank you for being here, and for sharing a little of what you’ve gone through.

    Wishing you all the best,
    Tamara

  • Tamara Haag moderator author
    3 months ago

    I wish there were more options for flexibility in many jobs. With teaching, obviously there will be students there every day so there have to be teachers. But even with jobs that don’t actually require people to be in a specific physical location at a certain time, many employers don’t allow flex days or include adequate sick leave, and so we just have to save sick days for the worst flare days. I wish that more employers allowed for some flexibility.

  • starscream
    4 months ago

    I don’t dare work on a brain fog day as I could make a serious mistake. I have to call in sick. I work weekends to catch up. It must be incredibly hard to teach during a brain fog. I hope you can find a situation that enables you to take days off when you are sick.

  • Leslie914
    6 months ago

    Well stated! The dog analogy is exactly the one I use when thinking about RA. I’ve battled this disease for over 25 years. Until about 6 years ago, I rarely talked about it because it is nearly impossible to explain. How can you wake up nearly immobile, make it to work, function for hours & end up exhausted, in pain & wanting to be left alone…every day? The joint replacements, infections, poisonous medications, fatigue, etc. are just so far removed from what is normal. I try to keep weekends free so I can try to rejuvenate but we all know how difficult that can be. I talk about it a bit more these days but this dog still prefers quiet time under the porch.

  • Tamara Haag moderator author
    6 months ago

    Hey Leslie914,

    Yes, I can result to all of that, and how hard it is to explain to others, especially when all we want is to retreat. Thank you for sharing your experience – it helps to know we’re not alone!

    All the best,
    Tamara

  • KarenG.
    6 months ago

    Thanks for another great article! My biggest problem seems to be communication – I cannot get the words out right (does that make sense?) so I just don’t talk. It has been the cause of many heated discussions. I need to figure out how to remedy this…..

  • Monica Y. Sengupta moderator
    6 months ago

    Hey @kareng! I think I know what you mean. It’s hard to explain what we’re going through without complaining and minimizing someone else (if you know what I mean).

    I try to talk about it more so I get practice explaining myself! ~Monica

  • Kim Thomae
    1 year ago

    I am the very articles you write! My family and friends understand the “dog under the porch syndrome” that hits me , now on a regular basis! My RA/FM flares are the kind that are as regular as the emotional roller coaster of my life.

    Sometimes the child in me, (I’m 62, but hey, age is just a number…unless you have RA!) wants others to know just how bad I feel. But the times I do fess up as to why I’m quiet and flat affected, I feel like a jerk. No one should have to feel bad because I do.

    Thanks for putting into words how RA sufferers feel!

  • Tamara Haag moderator author
    1 year ago

    Hey Kim,

    Thank you for sharing! I’m glad you find my articles helpful, and I’m so happy to hear that your family and friends understand when you need an RA retreat (under the porch). That is a blessing indeed, as I read so many comments from others in our online community who do not have a supportive network of friends and/or family.

    I certainly understand not wanting to drag down others when we don’t feel well. Picking and choosing when and with whom to share our RA experiences is so personal, and I find it’s so hard to know when to do (even after nearly two decades of experience with it). Sometimes I’ve reluctantly shared that I’m in pain and have had the person reply, “Oh, I thought you were mad at me!” and I was glad to have shared it. Likewise, every once in a while I connect with someone who has a loved one with RA or a similar condition, and it’s helpful to share information. Other times it doesn’t go so well, and I regret mentioning it. It’s so hard to know!

    Thank you for sharing your thoughts and experiences. You seem to have a very positive attitude in spite of the challenges you face, which is admirable and uplifting.

    Wishing you all the best,
    Tamara

  • kat-elton
    2 years ago

    Hi Tamara, great article! I so relate to this. It wasn’t until I was in my early 20’s that my disease finally calmed down enough and I discovered I was much more outgoing than I knew! I was a really shy kid and looking back I have to wonder how much of the shyness was pain induced. Thanks for talking about this.

  • Tamara Haag moderator author
    1 year ago

    Hey Kat-elton, What an interesting perspective you have as a person whose condition improved as you got older! That’s very interesting for me, as my RA didn’t get bad enough for me to persist through the misdiagnoses to get to an accurate diagnosis until my early 20s. That’s fascinating to hear that you have discovered new sides to yourself as you’ve found methods of managing RA (and that your experience seems to be the mirror image of what mine has been, which is validating). Thanks so much for sharing! All the best, Tamara

  • Weaselbum
    2 years ago

    This really chimes with my experience. Since developing RA two years ago I feel like I have lost a part of me. I too was bubbly, vivacious, sometimes too full on for some people. Now this side if me rarely comes to the surface as pain is always nagging at the edges of my consciousness, or on some days biting chunks out of wellbeing. I find I don’t like to bring it up as it gets a bit old…not everyone gets that this is my life now. Thanks for sharing, it helps to know I am not alone.

  • Tamara Haag moderator author
    1 year ago

    Hi Weaselbum, Thanks for reaching out with your comment! I’m sorry about your RA diagnosis. It is very difficult to assimilate RA as “the new normal,” and I know exactly what you mean about “not everyone gets that this is my life now.” I’ve been diagnosed for 17 years, and yet I still find that many people do not get that this is my life now. I am glad to hear this website helps you know you’re not alone. I have a close friend with a serious chronic condition, but most people I know do not understand what it’s like to have one’s health be so precarious, changing from day to day and never as good as we’d like it to be. I, too, have found it helpful to be a part of this online community, where I can read so many people’s stories, so similar to my own. Thank you for sharing your experience, as it is validating for the rest of us to know we are contending with the same disease and responding in similar ways. Please continue to share any time you feel inclined or ask questions any time you may have one. Wishing you all the best, Tamara

  • melmason
    2 years ago

    Yes! I can so relate to this! I tend to “hibernate” when I’m in a flare. I don’t want to talk to anyone or do anything. Totally opposite from my normal, very outgoing, talkative, friendly nature. It’s horrible, and depressing, and I hate it. I try to push through it and be my normal self, but it’s impossible when the pain is all I can see, hear or feel. I’m a SAHM, so fortunately, I don’t have a job to worry about, but I feel guilty constantly because I’m letting my husband and 13 yo daughter down. It’s not fun. All i can do is make the best of the “good” days, and pray they understand.

  • Tamara Haag moderator author
    2 years ago

    Hey Melmason,

    I think most of us can relate to that feeling that we’re letting others down. Whether that’s true that others feel let down or we’re just not meeting our own expectations, that sentiment is certainly familiar to me. Just remember that you are doing so much IN SPITE of having a painful chronic condition. RA/RD may keep us from doing as much as we’d like to do, but when factoring in the hurdles we’re jumping along the way, it’s pretty darn impressive how we keep carrying on in spite of the pain.

    I wish you all the best and as many flare-free days as possible,
    Tamara

  • Zoey
    2 years ago

    I am a bit of an introvert, but when in pain flare with RA, I try to counter it by getting out of myself. I go and spend time with a friend and fake it . I get animated and try to be in the moment with them. I hope I do not come across as phony.

  • Richard Faust moderator
    2 years ago

    Hi Zoey. When I saw your comment, I couldn’t help but think of this earlier article by Tamara on faking it: https://rheumatoidarthritis.net/living/faking-it/.

    Most people, when they say someone with RA is faking it are implying they are not as sick/fatigued/pain-filled as they say, but the reality is that many people with RA fake being o.k., so as to seem in better shape then they are.

    Know that you never have to fake it here and can share exactly how you are feeling. Best, Richard (RheumatoidArthritis.net Team)

  • Tamara Haag moderator author
    2 years ago

    Hi Zoey,

    Thank you for sharing your experience and perspective, as even though we all have the same disease we are all different, and the more voices in the choir the more likely everyone will hear one that resonates with them. While our challenges are similar, our responses may vary, and it’s always helpful to know what works for others. I hope you will continue to reach out with your comments.

    Wishing you the best,
    Tamara

  • CynthiaFarthing-Sayre
    2 years ago

    Tamara, I so understand! Fortunately, I live alone, which allows me to be that silent warrior. Children are grown, I’m widowed and retired, so I have the upper hand on RA in that I can choose to stay in bed or attack this with a vengeance on the better days. I was finally diagnosed two years ago during a flare, which is still active and has quickly aggressed into heart, throat, and deformity issues. I do have pity parties every once in a while, but mostly I look for new ways of doing things, discovering that I have many more talents then ever expected. My greatest fear is that one or more of my children (6) or grandchildren will experience RD. We can’t make RD go away but we can surely do what works best for each of us.<3

  • Tamara Haag moderator author
    2 years ago

    Hi Cynthia,

    Thank you so much for sharing your experience and your perspective. Some people might lament being alone, so I admire that you can see some benefits of being able to be on “your time” versus meeting others’ expectations when at home.

    I know exactly what you mean about worrying about passing RD on. My children are still young, and every time they have pain or immune system issues I worry. I wrote an article about that: https://rheumatoidarthritis.net/living/mommy-knee-hurts/.

    I’m sorry about the multiple challenges presented by RD and the aggressive nature of it that you are experiencing. I’m glad you found our online community, and I hope you will continue to share any time you feel so inclined.

    Wishing you all the best,
    Tamara

  • IamStable
    2 years ago

    Tamara, I share this too. Nobody could ever shut me up, but this disease has. EVERYONE can tell when I feel good. I’m my normal chatty, witty self. But when I don’t feel well, I’m silent and surly. I can see why RA patients can be perceived as bi polar.

  • Tamara Haag moderator author
    2 years ago

    Thank you for sharing, IamStable! I wish no one else had to contend with this disease, but since so many of us do in fact have it, I’m really grateful that we can share our experiences to know we’re not alone and at least feel understood by one another. Sending you gentle hugs, Tamara

  • Lawrence 'rick' Phillips
    2 years ago

    Oh, I am afraid I do not do well during a flare. Visiting is just so difficult. I hope your friends understand. I am sure they did.

  • Tamara Haag moderator author
    2 years ago

    Thanks Rick! Yes, they understood. I am lucky in my close friends, if not in health, which is something to be grateful for, for sure. I always appreciate your comments. Have a wonderful weekend!

  • patticake
    2 years ago

    You took the words right out of my mouth! Great article that obviously resonates with many of us. I have been living with RA for 15 years and I do tend to isolate when I’m in a flare. I hope your friends can get together again when you’re feeling well!

  • Poll