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Woman zipping lips while hand is in flare

Not Talking About the Pain

I know that every day I have pain. I know that the name for this state of being is called living with chronic pain. I know that my pain comes from having rheumatoid arthritis (and the resulting joint and bodily damage) for about 40 years. I know these facts. I just don’t like talking about them too much.

Generational habits of not complaining

Maybe this habit comes from my grandfather. He lived through the Great Depression on a fading farm. He went to World War II. He didn’t talk about these things much, even though they were not easy. He had stories he would tell about the farm, about repairing machinery in the war and the family that invited him to Christmas dinner after they liberated the village. But the real painful stuff was left to the imagination, the silent gaps in the conversation.

We all knew. We just didn’t talk about it. Farming in the Depression as a child sucked. I’m sure my grandfather was hungry. It was a hard way to grow up. And I’m sure he saw things in the war that haunted him—that no one should have to go through these experiences. But he was a survivor. And partly how he survived was recounting the good things and not dwelling on the bad.

Normalizing RA during childhood

There are good reasons for talking about pain, but I’m just not that kind of person. Even as a child, I didn’t complain. I must have been hurting a great deal, when at just age two, I had a large swollen left knee and limped when I walked. But my parents said I didn’t say anything about pain. I was just used to it. Maybe it came on gradually and I thought it was normal. How was I supposed to know any differently?

In many ways, it was great to have my illness normalized. When I visited my grandparents’ house, my father had to carry me up the stairs. But my grandparents never said anything to make me feel different than the other grandchildren. I was just myself, even though we all knew my situation was different.

There have been times when I could not just incorporate the pain into daily life. It was when I couldn’t sleep from the pain. It was when my hips hurt so constantly that I could not concentrate. It happens on days when I wake up and the pain disrupts all thinking and functioning. I shut down and am in bed for the day. My voice disappears along with my energy. I guess I am still not talking about the pain. But it is talking for me or instead of me. It takes over.

Not talking about RA pain

I just don’t like dwelling on it because it feels to me like giving the pain too much power. If I sit still for a moment and listen to my body, I can identify the places currently in pain. I hear it. I know it. And I don’t ignore it, but I don’t give it control. On most days I both know about the pain and yet move on with my activities for the day not giving it much attention.

Perhaps not talking about the pain is a strange and unusual habit. But it is part of my coping mechanism, I suppose. I simultaneously know it is there and choose not to acknowledge it. I fear that giving it too much attention feeds the pain and would lead to excuses and inactivity—to not doing what I want to do each day. I think part of my reaction is knowing that it is always there and there is nothing I can do about it except to take as best care of myself as I can. It’s that constant companion that lets me know I am alive and have RA.

But, let’s not talk about it. Okay?

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

  • JAK1016
    8 months ago

    I cope by reading these stories.You all understand my pain and to put it bluntly you get it! I hate trying to explain RA to family that will never get it.(it is not in my head or as easy as a cold) I have found solace in this network and now I know I am understood by someone.

  • Kelly Mack moderator author
    7 months ago

    So glad you find support in our community, JAK1016! We are here for you. Take care. Best, Kelly (RheumatoidArthritis.net Team)

  • Susie Que
    8 months ago

    I totally agree, I don’t talk about and don’t like to be asked about it. Talking about it doesn’t make it go away, I don’t want to give it my attention. Keeping my mind busy helps with pain. It works a lot of the time. Some days my voice is so soft people can’t hear me, this has been common with me for 40+ years. It’s a lack of energy because the pain is using it up. I just remind myself tomorrow is a new day.

  • Kelly Mack moderator author
    7 months ago

    Susie Que, I have very similar experiences. In fact, I had a bad pain day yesterday and felt like my voice was very weak. Hang in there! Best, Kelly (RheumatoidArthritis.net Team)

  • molli2018
    8 months ago

    So very very true. Which is why I hate having to “score and rate” my pain Just hate having to talk about how much it gets to me

  • Kelly Mack moderator author
    7 months ago

    So agree molli2018! I just can’t score my pain. It never feels remotely accurate! Best, Kelly (RheumatoidArthritis.net Team)

  • BS2018
    8 months ago

    I think we do become used to the pain. It’s a daily occurrence to us. However, when it’s out of the ordinary, that’s usually when we speak. I think others see as over the top then because they don’t know what we’ve dealt with every day. On thing I loathe to hear a practitioner say is “You’re just more sensitive to pain.” That really pisses me off because no I am not. I sit around in pain all the time and no one ever hears about. THIS?!? The reason I am seeing you today? It would put anyone else down and out. I am here because it is NOT my norm. Just like someone with an acute injury/illness sees a provider because the pain is new/different, I think that is what a lot of us do–and then get treated like we are over reacting.

  • Kelly Mack moderator author
    7 months ago

    Good points BS2018! We do get used to it and then also find people that don’t listen or take the pain seriously. Keep on fighting the good fight. Best, Kelly (RheumatoidArthritis.net Team)

  • MrsT
    8 months ago

    I’ve had RA for 47 years. I don’t talk about it either unless someone asks. I think, for me, I don’t talk about it because its just a part of me….like breathing is. I don’t talk about breathing either. 😉

  • Kelly Mack moderator author
    7 months ago

    🙂 Thanks for sharing your perspective MrsT! Best, Kelly (RheumatoidArthritis.net Team)

  • Nene
    8 months ago

    When does talking about it become complaining about it? I suffer in silence. People ask me how I’m doing. If I tell them, even a smidgen, I’m complaining. I’ve had to resort to self care because doctors have given me the same “cold shoulder” treatment. My RA is mostly notable in my back. Now, my fingers are showing more visible signs. But ask me how I’m doing, I’m fine. Pardon me for complaining.

  • Franki King moderator
    8 months ago

    Nene,

    It’s okay to complain! Everyone has something to complain about or something that they need to get off their chest. If you don’t judge others for sharing their life frustrations to you then why would they judge you? I think about this a lot, too. I believe that as long as your feelings towards your RA don’t consume most of the conversations that you have with the people in your life then there should be absolutely nothing wrong with sharing if you want to. Your loved ones are there to listen and vice versa. This community is also here to listen. We’re all complaining about the same thing. Stay strong.

    -Franki (RheumatoidArthritis.net Team)

  • Richard Faust moderator
    8 months ago

    Hi Nene. Don’t see you comments as complaining at all. Every patient deserves to be heard and treated with respect by medical personnel – after all they do work for the patients (sometimes I think that the customer – provider part of the relationship gets lost). In this vein, thought you might be interested in this other article from the author on signs it may be time to dump a doctor: https://rheumatoidarthritis.net/living/dumping-doctor/. Best, Richard (RheumatoidArthritis.net Team)

  • 05tails
    8 months ago

    Pain seems to be our silent partner. Some days it gently reminds us and other days it screams out loud. I am one who talks about pain, not for pity or to be treated differently. I want the world to understand about RA.

  • Kelly Mack moderator author
    7 months ago

    Thanks 05tails–that is a great point! Thanks so much for sharing. Best, Kelly (RheumatoidArthritis.net Team)

  • Lawrence 'rick' Phillips moderator
    8 months ago

    As my grandmother used to say , what we do not acknowledge will take longer to hurt you. Wait, what? LOL Really she used to say that nonsense. I am glad you are taking a different approach.

  • Kelly Mack moderator author
    7 months ago

    LOL! 🙂 Thanks Rick! Cheers, Kelly

  • MiniMajik1962
    8 months ago

    I also hate it when people pity me, and if I don’t talk about my constant cruel companion, then others are much less likely to pity me
    Like you, I do not remember anything different, and if I awoke one day without constant, severe pain, I’d know I had died in my sleep.
    It is what it is, and I’m constantly telling people (those who don’t know me that well) that I will be in just as much pain, if not more if I just sit around as I will be LIVING my life to it’s fullest and living my dreams the best way I can.

  • Franki King moderator
    8 months ago

    MiniMajik1962,

    I love your outlook on this disease! You’re right. We’ve lived with the pain, we know the pain, so it should never stop us from living our lives to the fullest! Thanks for being apart of this community with us. You inspire me, and hopefully others, to stay positive about the pain.

    -Franki (RheumatoidArthritis.net Team)

  • Richard Faust moderator
    8 months ago

    Hi MiniMajik1962. I think there probably is something different about growing up with the disease, especially if the diagnosis and progression happen very young. I’m the author’s husband and I’ve always sensed that not knowing anything different gave Kelly a … well, different perspective. She writes here about being a child with RA:https://rheumatoidarthritis.net/living/being-a-child/. I know there certainly is a desire to live life with some normalcy. In another article on how we met she notes that I treated her “like a full, complex human” (note to general public: it’s really not that hard). Keep on living that life to the fullest. Best, Richard (RheumatoidArthritis.net Team)

  • MiniMajik1962
    8 months ago

    I so get your thoughts on pain, your way has also been my way for the 50 plus years I have had JRA. I also feel that if I give it too much attention, it might start to define me, and THAT I never want to happen !!!!

  • Kelly Mack moderator author
    7 months ago

    Totally agree MiniMajik1962! I sometimes worry that giving pain attention will allow it to take over my life. Hang in there! Best, Kelly (RheumatoidArthritis.net Team)

  • Indigo2
    8 months ago

    That is good “not talking about pain” works for you but for many of us, we need to vent to someone & talk about the “pain” periodically or we would not be able to “cope” so, whatever works for the individual, we all still have “choices”!

  • Richard Faust moderator
    8 months ago

    Hi Indigo2. Figuring out how to talk about pain or RA in general and with who is truly a difficult and personal decision. In this other article from the author (full disclosure – I’m Kelly’s husband) she looks at the struggle of figuring out what to tell others, including who: https://rheumatoidarthritis.net/living/what-tell/. You are always welcome here to vent. It truly is one of the great side benefits of finding a community of people with similar experiences. Best, Richard (RheumatoidArthritis.net Team)

  • Indigo2
    8 months ago

    Hello. Richard, I am not venting. We each find what is comfortable for us individually, no one can tell anyone what to do…and should not.
    I know the difficulties first hand.

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