The Burden of Pain

The Burden of Pain

By definition, a burden is a heavy load that someone must carry. But when it comes to the burden of pain, living with it isn’t that simple, is it? If you look at it literally and figuratively, a burden can be many things. When you live with psoriatic arthritis, the burden of pain can feel BOTH literal and figurative.

As a dominant symptom of psoriatic arthritis, we talk a great deal about pain – how to manage it, how it affects daily life, even it’s emotional implications. But as patients living with this disease, we don’t often look at how the burden of carrying around this pain changes our lives, inside and out.

The burden of pain costs us relationships with friends and family

This burden is a very heavy load to bear. While we wish that family and friends could have a greater understanding of what we go through, so we feel less alone, at the same time, we would never wish this pain on them. These conflicting emotions within us can often cause strain on our relationships with family and friends. Making the burden feel even heavier with few people around to shoulder it with us.

The burden of pain makes us question our own sanity

When you experience pain, even mild or moderate pain, over an extended amount of time you begin to question your own sanity. Am I really feeling this way? Could I be overreacting? Am I just sensitive to pain? Or worse, am I imagining it? Most of the time, we can’t “see” our pain. There aren’t usually giant bruises, or mangled bones that you would expect when you experience our pain. I don’t see anything wrong! How can I hurt this bad over something I can’t even see?!? It can really play tricks on our minds.

The burden of pain forces us to make difficult choices

I know that I don’t want to burden others with my pain. People ask how I’m feeling, and I know I’m lucky that most people who ask me really want to know. But at the same time, if I answer honestly, aren’t I just upsetting them? I know they care about me. They know there is nothing they can do. So isn’t being honest just making them feel worse and doing nothing to help me? Which leaves me with the question, why would I burden the people I love, with my own pain?

So now, for the most part, I simply say I’m doing well, or okay, or even pretty good. And it fools them, most of the time. And while I don’t like making that difficult choice, to lie or to be honest, the burden of pain that I feel forces me to make it to protect those that I love from the real burden of pain that I experience.

The burden of pain never really goes away

It’s already been established that a burden is a heavy load that someone must carry. We’ve discussed the emotional burden of pain but there are many days, when it feels like the burden of pain is a literal heavy load to carry. I can feel the physical weight of it pressing down on my shoulders, making it difficult to walk around and simply be “light” and “carefree” again. I can feel the burden of pain causing soreness in my back, hips, and even my fingertips.

Yes, there are things that I do to bring myself as much relief as possible. But again, the burden of pain requires me to do that. It requires that I have ice packs and heat packs handy. It requires that I watch what I eat, take a multitude of prescription and non-prescription drugs, and make my body move and stretch even when I doesn’t want to.

All of this, these things I must do, are all part of living with the burden of pain.

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

Comments

View Comments (6)
  • pbarry23
    3 weeks ago

    Thank you for writing about the pain. I feel so alone in my pain. I can share this article with friends and family.
    All of the replies are amazing too. Thanks
    Pattie

  • tarafight
    3 months ago

    Your line, “we wish family and friends had a better understanding” really resonated with me. I was born with jPsA and wasn’t diagnosed until I was 18 – after years of unexplained pain, bone breaks, and orthopedic surgeries. That was ten years ago now and, although I have a medication regimen that works for me and am vastly more informed about my disease, it is still no easier for people to understand that – although I am still young – I am plagued by this disease and pain is my constant companion.

    My wife is a beautiful and wonderful person. She is incredibly attentive and observant; she will often point out a flared joint before I even hold mental space for the pain or realize that I am favoring other joints to compensate. She is a blessing, without a doubt. But, this disease still takes its toll on our relationship. Hiking, sports, going out with friends, or even just to the store – those things can only happen together on a “good arthritis day.” We find ourselves in the position of deciding: should she do what she wants apart from me, or should she be stuck sitting around with me accompanied by feelings of guilt (me) and bitterness (her, not at me but at the arthritis, also somewhat inferred by me)? I know my arthritis affects her, and I also know she knew what she was signing up for when we got married – for better or worse and all that – but, it really is burdensome.

    Also, being so young, I have the privilege of having relationships with a few of my remaining grandparents. I love them, but it is sometimes very hard – especially when they say things like, “It’s horrible getting old, you don’t understand. Things hurt you didn’t even know you had.” I am left thinking, “Grandma, I love you, but I know better than you can imagine how you feel. My fingers and toes are more crooked than yours and the pain with which you walk is rivaled by that in my own joints. I love you, but I am nearly five decades your junior and I fervently pray that by the time I am half your age I will still be able to walk. I pray that if we have a child, I will be able to hold them, and that I will be able to be a valued part of my loved ones’ lives rather than a burden. I don’t think you can imagine how I feel.”

    And then, there are the family members like my mother who think that because I have arthritis I shouldn’t walk the extra distance to get the mail, she should do it for me – constantly pre-determining my inability or the best course for my future: this medication, that diet, the perfect job, not that health insurance or the other… She means well, but overfunctions without listening or seeking to understand.

    I ofen wish that, for one day, everyone around me could fully understand and that communication wasn’t so damn hard… and that arthritis ceased to exist (but that’s too hopeful).

    Thanks for sharing.

  • Debbie71016
    4 months ago

    I have been taking CBD oil for pain for a year now. I had to wean myself off of my pain medication because I wasn’t able to get it prescribed any longer so I started the CBS oil. It does help. It’s my understanding that it is legal in all 50 states at this time. I order it online.

  • elanowolf
    5 months ago

    Thank you so much for writing this! As I read it, I started crying and could not stop. I don’t usually cry. I read it to my husband. I had Sepsis a few years ago and after I lived, my rheumatologist said they had to stop all my psoriatic arthritis medicines. Remicade IV too! Suggested I get CBD oil and pain management. Can’t get real CBD oil in my state. For 3 1/2 years, I took Nucynta ER and Tramadol. I started having horrible allergic reactions and sleeping over 16 hours each day. I was a zombie. 3 weeks ago, I just stopped the Nucynta ER. Much better but now pain is back. Is there really an answer? Or does one just have to wait for death to have peace and no pain? Anyway, you certainly said it perfect!! Thank you!

  • imschmarte
    5 months ago

    This is all so true! I am so thankful I have my sister, who has all the same collection I do. Of course I am not thankful she has the diseases, but that she and I can talk about symptoms. I even called her yesterday, just to see if she was feeling as bad as I was, or was I just being a big baby! I wasn’t being a baby, fall is just so hard! The changing weather plays havoc on all our diseases. It is truly hard, and I feel for everyone who has any auto immune problems!!

  • AuntJana
    5 months ago

    So true Leanne. The pain, it is constant, always present.

    Today my husband came home from work, I was crying and he said we need to go somewhere else, another opinion…..he thinks he understands. He does see me in pain and thinks there is an answer. I try to tell him it is my disease, it is not going anywhere and I have to continue, keep trying the next medication….nothing works. It is so very frustrating, I wish I had better days, I do.

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