In the last few months my readership has jumped a bit (thank you to everyone who has shared my posts or had recommended my blog to a patient, client, family member, or friend) so I wanted to take a moment to explain a bit about what I’m trying to do here.

I’ve also been living without internet for nearly two weeks (how does she survive?!? you may ask) so my upcoming second post on challenging long held beliefs and confronting unfounded fears surrounding lifting weights is on hold (but it’s coming! We got internet last night, a mixed blessing. If you haven’t read the first of that series of posts yet, check it out here, it’s a good one).

What this is all about

The reason I write is to share my pain experience with others so as to let other patients know they are not alone and to help empower them to change their own pain while at the same time giving practitioners and carers insights into what their patients, clients, or loved ones may be going through but may not be able to give voice to.

Being in pain is hard and often scary. Pain takes up a lot of energy and resources; it’s stressful and can be quite unnerving, particularly if what pain is is a mystery; it leads to beliefs and expectations that may be unfounded; it’s emotional, and carries meaning and significance only known to the person in pain, of which they themselves may not be fully aware. It makes communication difficult.

Treating pain is hard. Treating pain takes up a lot of energy and resources; it involves a lot of factors that might not always be known to the carer or healthcare provider; the carer or healthcare provider also brings their own knowledge, biases, beliefs and expectations to the mix which they may intentionally or unintentionally convey to the person in pain. It makes communication difficult.

But because what a practitioner says is incredibly important, good communication is essential. And because what the person in pain may not say is also incredibly important, I want to to help bridge some of the communication gap between those in pain and those who treat, work with, or care for people in pain.

Personal reflections, scientifically informed

So I write about my thought processes a lot, not just research, actions, and outcomes. While I have my M.S. in kinesiology with a psychology emphasis and have studied pain science for a while now, this blog isn’t intended to be scientific or academic in nature but rather serve as a personal reflection of how I use my understanding of pain science in my every day life to change my pain experience and live meaningfully and actively.

I also think it important to note that I didn’t come to the reflections and realizations that I now write about until my pain had significantly improved. I had quite a breakthrough last year in my pain which changed my life significantly but made even greater progress this year after attending the San Diego Pain Summit.

Prior to these changes in my own pain experience, just a couple years ago when I was still in the worst of it, none of these things were clear to me. All that was clear to me was PAIN. I couldn’t think. I couldn’t make decisions. I couldn’t understand things that before would not have seemed so incomprehensible. And I’m sure this is true for many folks with ongoing pain.

So I want to help fill those gaps for others now, so it doesn’t take them as long to get here as I did.

What people in pain don’t say

During the years when my pain was at it’s worst I was lost and confused and worried about the future. I was afraid. I was stressed to the max. I was in pain constantly, there was no reprieve. And I didn’t know why, I had no pain science education at that time. I thought pain equaled damage and that with every move, during every moment of my life, I was damaging myself. I felt broken, fragile, and weak. I was damaged goods, worthless, unfixable. I was depressed.

I was silent.

I never told my physical therapists or my doctors or my claims adjusters or my employer or my friends or my family or my husband what my pain experience was really like; that pain was my life, my only thought, my sole focus. That it stole all of my energy and used up every last bit of my resources so that even simple decisions were impossible and daily tasks were insurmountable. That I felt like I was a burden, that no one should have to be around me because I was no longer fun, happy, me. 

I didn’t ask for help.

I didn’t see a way out. Pain was EVERYTHING.

What practioners treating those in pain don’t ask

Even when I was under active care by my surgeon, my physical therapists, the work comp system, none of these things came to light. I didn’t share how devastating this pain was to me. How worried I was about what it meant. How it affected all aspects of my being, my relationships, my life.

And I was never asked. Not one of those people ever asked about how pain was affecting my life; the very people who were supposed to be helping me with my pain didn’t really know my pain. They didn’t know my pain at all. Not the important parts, anyway.

We never talked about it.

I know it’s scary to ask a patient or loved one these things. We get worried that it will get too emotional, that it’s beyond our scope or our capabilities. But it’s not about being a psychologist diagnosing a condition, it’s about being a human listening to another human. It’s about validation, reassurance, and empathy. It’s about creating a safe environment of trust and respect.

It’s about knowing what’s really going on. It’s in here that the pain lies, not in the tissues.

I also didn’t know back then how much those other things played a role in my pain persisting (and, looking back, I don’t think my health care providers did either): the stress, anxiety, worries, uncertainty, and social withdrawal. The misunderstanding that pain equals injury, that I was damaged and unfixable. The belief that I was going to be IN pain for the rest of my life, unable to live the life I wanted to live.

I thought the pain was only in my tissues, where I felt it. I didn’t realize it was in everything, that everything matters. And that while that may seem overwhelming, it’s actually a good thing because it gives us a lot of entry points into our experience of pain to change it. But we have to talk about it first.

So I want to make it known to others. I want it to be ok to talk about ALL of chronic pain, not just where it hurts. Not just the ‘injury‘ or the diagnosis. We’re people here, not pathologies.

Being a good patient

Another thing that I think is important and often overlooked is that when I was under active care, I really wanted to be a good patient, a successful patient. I didn’t want to let my doctors, my surgeon, my physical therapists down. I liked them. I respected them and held their opinions in high regard. I did everything they asked of me.

And because they were the experts, not me, I believed that I had to be doing something wrong when my pain didn’t go away. I thought it was my fault, that I ruined my surgery. That I wasn’t doing PT right or sitting right or walking right or standing right or moving right. Why else would my pain persist?

So I tried to control my postures and movement more, which only increased my pain as I tried to sustain ‘correct posture’ to get out of pain, which led me to try to control it even more, and down the rabbit hole we go. All because I didn’t understand pain. All because I thought I was damaging myself and that there was nothing I could do to stop it, I had given it my all and failed.

Redefining success

That’s why I think it’s incredibly important to change our definitions of treatment success and to shift the focus away from the pain and toward the function, the meaning, the value, the quality of life of people in pain. We need to stop pathologizing movement and work toward moving with ease and comfort, no matter what that looks like.

We need to focus on LIFE not PAIN. Pain can be a part of an active, valued, meaningful life. Pain need not define us, it’s not who we are. It’s a part of who we are, along with all the other parts that make us us.

Let me be clear here, though. It’s not about saying ‘you’re stuck with pain, learn to live with it’, it’s saying ‘you have pain right now, here’s how you can change the experience of it and live a meaningful, active, valued life, one that allows you to pursue what matters to you’.

So we don’t ‘learn to live with it’, we don’t give up, we don’t stop working at it, we do quite the opposite: we LIVE while learning to change our pain.

When we make that ever-important shift, the pain gets better because life is better.

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Once I started living with pain, truly living, rather than fighting pain or battling pain or suffering from pain or trying to eradicate pain, I was able to hike again. To take pictures and be creative. To explore without expectations. To discover things about myself and about the world around me that I didn’t know before. To bask in the glory of nature, to move and challenge my body, to breathe and feel calm and content while being physically active and curiously engaged.

To recognize that the world is bigger than my pain, and a beautiful world it is.

That’s what I want for all folks with pain. I want them to once again live in a beautiful world, whatever that means to them. That’s why I write.

Thank you for reading my words. I’d love to hear from you.

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6 Responses to "Improving communication, giving voice to those with chronic pain"

  1. Another excellent post Jo. Just fascinating and so valuable to hear the voice of someone who suffers from pain.

    Science is wonderful but reductionist and too often used to ignore the whole.

    I love your philosophy. Create memories and redefine your pain. Give your mind something else to focus on that you enjoy

    • Thank you for taking the time to leave such a kind comment, Colin! It is ver much appreciated. As I chatted with one of my pain heroes recently, Bronnie Lennox Thompson, we talked about how humans are complicated and pain is weird and pain is complicated and humans are weird – it’s not a readily defined experience and the experience will be different for each person so there is no simple solution.

      One common theme we can all work from though is that living a valued, meaningful, active life is possible, even in the presence of pain, and that we can live that life NOW without waiting for the pain to be gone. And that doesn’t mean giving up! It means quite the opposite.

      Thank you for your continued support and encouragement, it means a great deal to me.

  2. Thanks for this post..again very helpful..redefining success is the key from my recent experiences…people who are open to do this seem to do relatively well…but where i struggle is when you try to redefine success some people are not willing to let the pain go…what i mean is if they arent pain free they wont think they are successful and by suggesting that they think in a different way they are somehow giving up and will be the same way they are now forever…

    • Keith, as always I appreciate your comments, question, and search for how we can all do this pain thing better!

      It is hard to shift the success focus from ridding oneself of pain to being able to live a full, active, meaningful life in the presence of pain because we often feel that the latter cannot happen without the former. I think for me that it happened because it was never an overt discussion or switch. It started when I was in Egoscue, where the focus was never on my pain but was rather on my function. They never said “we’re going to use function as a measure of success rather than pain”, it was never explicit, it was just built into their language and approach. They’d ask about how I was feeling limited and we’d work on those limitations. Eventually I started thinking in terms of function instead of pain but if I was told to do so or that I should be thinking about my pain differently, I don’t know that I’d have gotten there.

      As you said, it’s much easier to accomplish when people are ready for it. And I think people are only ready for it when they come to it on their own through awareness, education, reassurance, support, and encouragement. When those things are applied consistently, change can happen.

      It’s also hard to make the separation between acceptance and giving in to the pain. For a long time I thought if I accepted pain, that meant I was giving up hope. I don’t know when the flip was switched but I talk a bit about it in this post that may help some of your patients if their open to reading a blog post:

      http://www.mycuppajo.com/acceptance-it-doesnt-mean-giving-up-or-giving-in/

      I know how hard it must be from your perspective as I saw four different physical therapists before I finally started coming to these realizations myself. None of them were bad, one was absolutely fantastic, I just wasn’t ready at the time I was under their care because I wasn’t informed enough, and I didn’t know how important all the areas of my life were to my experience of pain. And once I started learning these things, it still took time for it to sink in and mean something to me, to be something I could act on.

      It’s important for folks to be supported in their quest to be pain free but to be encouraged in short term goals to improve function, which is really the only way to improve pain, and to be assured that by learning to live with the pain that their experiencing right now, so that today and tomorrow can be the best possible days with their present reality, that the pain will improve. And the more function improves, the more pain improves. So living now supports that long term goal of being pain free with out having to wait for that day.

      You’re doing good things, my friend! Keep on keeping on with dignity and fortitude. It’s the best we can do.

  3. Oh so true. Even though it’s difficult and you do give yourself the time to acknowledge how hard it is to live with pain, it is an incredible moment when you finally stop looking back at what you lost and who you were and suddenly see what’s in front of you and who you can be… it’s a whole new world. Not what you would have planned as your previous self, but certainly still containing some great quality of life.

    Keep inspiring me, please!

    • Soula,

      Thank you for taking the time to leave such an eloquent and lovely comment. This new world was definitely unplanned but also worth exploring, discovering, and enjoying.

      I think one of things people have difficulty with is feeling able and allowed to acknowledge and talk about the difficulties of living with pain while also living a full, active, meaningful life and acknowledging and talking about that, too. The two are not mutually exclusive, it’s not experiencing pain OR living a good life, there is room for both.

      Pain is hard but life is beautiful.

      And I can’t tell you how much you inspire me as well. I am so grateful our paths have crossed.

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