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Pain is what the Patient says it is  

Pain is What the Patient Says it is  

The title of this article is my favorite definition of pain. Pain is an unpleasant experience that is subjective in nature, with a physiological component; this definition may be more scientific, and explanatory, but it also explains why the top definition is the more appropriate one. The only expert about your pain is you, not your doctor, nurse, or pharmacist. You know what makes your pain worse, what makes it better, and that half the time trying to find causality is a frustrating waste of time. You know that when you are feeling down your pain feels worse, and you know that there is no way you would ever “fabricate” bad pain because the only person who would think that’s a good idea is one who hasn’t lived with pain. People in chronic pain want to run as far away from it as possible, not pretend it’s worse. Pain is a thief, and if you have been one of its victims you will do everything you can to get out from under its hold.

Defending our pain.

In today’s world, pain has become such a hot button issue that many people who live with chronic pain are being forced to use their precious energy defending the fact of their pain. This is the worst way to live well with pain because living well with pain involves feeling heard and supported. Without that, the very mental states that doctors insist we all must avoid, will follow.  Now, many of us are forced to live without their medications. We are hearing that since pain is a construct of the brain, we should be able to talk ourselves out of it. We are looking at the faces of disbelief when we tell our health-care practitioners that our pain level is a 7 or 8, 9, or 10. None of this is conducive to a good life. And none of it is what we need to be focusing on right now.

Seeing is believing?

In the course of the past month I’ve encountered disbelief during an infusion about the level of my pain, and from my physical therapist who challenged the idea that I could still have pain even if I wasn’t conscious of it. I told him that is what distraction is, an effective way to take the conscious mind away from the pain, and something that I believe has saved my sanity. I’ve had infusions for years at the same center and my pain level has stayed pretty consistent. It has only been during the past few months that I get the disbelief from my nurses. Given the adage, “seeing is believing,” I understand how pain may be harder to see than perhaps a swollen joint. But, when will we be able to stop defending our pain and start having it seen?

I have a black t-shirt that I bought a few years ago during arthritis awareness month that says this on the back: This Shirt Turns Black Whenever I’m In Pain.” I’ve only worn it outside the house once. I’m afraid of declaring my pain to the world; I’m afraid that I’ll be labeled as someone who enjoys the “secondary gain,” that pain supposedly provides.  But it’s come to the point that I think this has been a bad decision. It is time for people in pain to tell others about it. It’s time we let people know because if the patient doesn’t say what pain is, then the medical community will do it for us, and I for one think they aren’t doing a good job.

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


  • judy_c
    10 months ago

    I needed this article today – thank you! My RA might be somewhat atypical in that I don’t experience a lot of swelling, but I feel painful every day. When trying to explain this to the rheumatologist, he looks at my hands, wrists, and elbows and says they look fine. I try to explain what it’s like, when it happens, but because I look ok on the outside I feel a bit like it’s in my head. This article is encouraging. In this journey (4 years now) I’m figuring out that the docs just don’t get it sometimes.

  • Jo J
    10 months ago

    Judy, have you ever had ultra sounds to assist with measuring the progression of your disease? I find the US frequently better match my symptoms than visual exam.

  • tckrd
    10 months ago

    Thank you so much. Those that are not in pain and could not imagine our kind of pain are always telling us that are experiencing what sometimes is unimaginable pain that we are not. If only they could feel our level 6 pain once maybe they would stop this confused brain garbage.

  • farawayreasons
    10 months ago

    I have had severe RA for over 30 years and I have been told by many health care providers that “I could not be in pain because my lab tests are normal “. Guess what? My sed rate didn’t always produce pain. The joint damage does and you can’t see that on a lab slip

  • Richard Faust moderator
    10 months ago

    So sorry you have had these experiences farawayreasons. Tests absolutely do not always tell the whole story. In this article one of our contributors (full disclosure – I’m the author’s husband) writes about a doctor who starts every appointment by asking her how she is feeling, before ever looking at any numbers: Wishing you the best. Richard ( Team)

  • Larry Sawyer
    10 months ago

    Kat don’t listen to them, don’t read their bs, do not give them credit for having any brains at all. For 20 years, all the kings horses and all the kings men had no idea what I had. but they had plenty useless advice, and they always will. you know what is happening to you and with RA you have enough going on without being distracted by charlatans peddling psychobabble medicine. So, listen to your fellow RA folks, who know the path you travel and the pain and fatigue which accompanies it.
    be well and keep on trucking

  • kat-elton author
    10 months ago

    Great advice Larry!! And back at you- Be well. Kat

  • Nina Winterbottom moderator
    10 months ago

    It’s great to hear this support, @larrysawyerk9, and horrible the way people with RA can be treated. Wish I could frame this statement to share with so many others. Keep advocating! – Nina, Team

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