Pain, the power of words, and the patient-practitioner dynamic

I’ve been away from writing for a while because life is happening all around me and I haven’t made the time, but a recent blog post by Dr. Bronnie Lennox Thompson got me thinking (as they usually do!) on a whole lot of topics. Appropriately, her post was titled “Musings on New Learning” and those musings got me onto plenty of my own and I just mind spewed for a bit in this post on language, motivation, pain science, and the difference between pain science and being a human in pain. Hope you enjoy!

Words have meaning

We are not machines with replaceable or fixable parts. Even when a ‘part’ can be ‘fixed’ there’s a whole lot more that goes into it than a simple fix, as is possible with a machine. A new knee may be met with trepidation, a loss of confidence in the body part, worry, and depression. Or a new knee can be met with hope, with renewed confidence, with excitement and happiness. We are humans, not machines, with emotions, thoughts, knowledge (or lack of knowledge), fears, memories, hopes, dreams, pasts, limitations, egos, personas, professions, relationships, capabilities, possibilities. We are resilient and adaptable. We do not function with a limited set of inputs that lead to a limited set of outcomes as machines do, our inputs are infinitesimal and sometimes unpredictable or unknowable. Our outputs are, too.

We are not machines. We cannot just be ‘fixed’.

I think it’s important to talk about this because so much comes down to language: the language we use to teach, the language we use to inform, the language we use to describe concepts and prescribe treatments, the language we use to tell our stories, both to ourselves and to others. A mere word can conjure of memories of our pasts or hopes for our futures, a phrase can make us cringe or make us laugh, a sentence can give us hope or lead us to despair and the same words can have opposite effects on different people based on their memories, their hopes, their culture, their fears, their education, their dialect…their unique human experience.

That’s why it’s important to listen first.

We can learn a lot by just listening to someone talk, the words they use, the way they describe their pain, their health, their work, their hobbies, their relationships, their lives. If we can truly listen, we may become better attuned to how to communicate with that person, which words may be helpful and which may be harmful, which may be understood and which may need to be rephrased.

Motivation to change pain

I hear often from very well-meaning healthcare professionals that they wish their patients were as invested in their health as they are as their practitioner. It breaks my heart when I hear that. I understand their frustration, this is a profession that they are passionate about, that they’ve devoted considerable time to, that partially defines who they are, so it must be frustrating to feel like patients aren’t doing what they’re asking or aren’t improving. But this also implies that the patient is at fault for their pain or their illness and that implied blame has to be felt by the patients, even if it’s never explicitly voiced.

It also implies that people in pain or people with illnesses that aren’t well managed don’t care about their health or their lives, which I also believe to be inaccurate. They wouldn’t still be here if they didn’t care, if they weren’t invested in it, if they didn’t want things to improve. As I stated above, we’re not machines, as such, we can’t simply be put through some diagnostic tests and then go into the shop to repair the malfunctioning parts.

The hurdles of changing pain in real life

There’s so much going on that all aspects of it are not likely to be fully touched upon. Most of these people have a profession themselves, one they, too, may care deeply about, may have devoted much of their lives to, and that may partially define them. And they may have families and responsibilities, they definitely have histories and past experiences and stored memories, they probably have hopes and worries about the future, too, just like we all do.

And then they have this pain or this illness piled on top of all that.

They have pain that isn’t just a broken or malfunctioning part, it’s a result of a whole host of biological, psychological, sociological, and spiritual factors that may be hard to pinpoint, hard to recognize, hard to change. Not impossible, just hard. But it takes work, lots of work, on top of all those other aspects of life.

What does it take to successfully manage pain?

When I first started actively managing my pain I timed all the things I had to do to manage my pain so I could function, it took me, on average, around 4 hours a day of various therapies and self-management strategies (and that could very well be an underestimate).

That was 28 hours a week.

That was on top of my 40 hour a week job that I commuted to up to 3 hours a day, on top of trying to be a good wife, on top of trying to maintain friendships that I was steadily losing because I didn’t have the capacity to go out and socialize, on top of trying to be a good daughter and sister and pet parent (thank monkeys I didn’t have kids, I would have been crushed by the weight of it all, I was already crushed by the weight of it all).

I was exhausted. And I was getting worse. Despite being as motivated as a person could be to get out of pain, to get out of the downward spiral I felt I was in and had no way of getting out of.

I was lucky, I was able to retire from my job at the fire department. I was able to make figuring out and managing my pain my full time job as I went back to school to learn about what the hell pain was and how I could get out of it. That is beyond lucky, the great majority of people out there don’t have either of those things as options.

Pain is WAY complicated amidst already complicated lives

And I learned a lot. One, I learned that pain is way more complicated than my biomechanical viewpoint allowed for. Two, I learned through pain science education what my pain wasn’t. I learned that pain didn’t equal damage, that pain didn’t mean I was broken, that pain didn’t mean I was fragile or weak or diminished. Learning these things allowed me to work on some other areas of my life that had been on hold while I was waiting for the whole pain thing to go away, I learned that I didn’t have to wait, that I wasn’t going to make myself worse or reinjure my hip or need another surgery if I started living again.

But I also still had some hangups with the language. Analogies and metaphors are incredibly important, but they must also be used carefully. A lot of pain science references alarms, which does a great job of making it clear that our systems can become sensitized and go off at the slightest provocation. But alarms are also machines and you can reset their sensitivity relatively easily.

Resetting our sensitized systems when we have ongoing pain is not so simple, there’s no diagram to follow, no specific thingamajig to tweak. It’s a good analogy to convey one point, but not all points so we have to be careful. I understood through pain science that my system was whack, that I needed to do some work to get it back in whack, but it didn’t really tell me how. Much of that I had to figure out on my own, with the help of some wonderful guides.

Education unlocks the door, but that’s just the beginning

Pain science education helped me understand what pain wasn’t, which unlocked the door to figuring out what my pain was all about and how to go about changing it. This is where it gets tricky, though, this is where the science doesn’t explain everything, this is where things get personal.

Through my educational process I began to understand that changes had taken place in my nervous system and immune system that led my pain to persist. I began to understand how important my my beliefs and thoughts and emotions and expectations were.

My haven has always been nature.

I began to understand how the stress of trying to go back to work despite the pain and going through the hassles of the worker’s compensations system, where I often felt doubted, suspected, and unsupported, contributed to my pain persistence.

I began to see how my social withdrawal was negatively impacting my health and my pain, as well as my relationships with people I deeply cared about and loved, people that I missed but that I didn’t want to burden with my pain.

I began to understand how important breathing, meditation, mindfulness, and getting out into nature were for me and that it wasn’t woo, that it was real. I began to see how having creative outlets, my photography and my writing, were crucial to my ability to change my pain.

I began to understand the importance of communication, of talking openly and honestly, of being careful with my words, and of telling myself a better story so I could live a better story.

I reinforced my belief that movement is life and motion is lotion and had a better understanding that it’s movement that matters, not necessarily as specific type or brand of movement, that there is no ideal, there is no one way. I was able to let up on my hyper-vigilance and to just get out and explore movement and have fun again.

And there’s plenty more, I’m sure, but do you see how much is already in there? How there’s so much more to pain than just the science? And how the so much more actually reinforces the science? It was through living it that I finally learned it, if you know what I mean.

Pain science isn’t the same thing as being a human in pain

There is science to back all of the ways I have changed my pain, from nature exposure to creativity to mindfulness to movement therapy, but you can pile up studies all day long and they’ll mean nothing to the person in pain if it’s not made relevant to their life, their experiences, their reality, their goals, their values, their family, their work, their dreams…to their very being.

If there not doing these things yet, that’s a hell of a lot of stuff to start thinking about doing let alone to start doing on top of all the other things they’re already doing day to day — work, school, family, kids, pets, friends, keeping house, keeping up appearances, keeping sane.

What is meaningful?

Movement has always been my go-to my whole life, even before my pain issues set in, so it was easy for me to turn to. But I was always an athlete and an outdoors person, I worked as a firefighter in a very physically demanding occupation, I thrive on and love movement, not everyone has that background, not everyone has that love of physical activity. So that can be a big ask because it might not make sense to them, it might not fit into their narrative.

We have to do better at making movement make sense for each individual, for making it meaningful, for making it a part of their story, their life. We need to do that for all of these areas of life that can be changed for the good to change pain for the good. We can’t just tell folks it’s good for them, that’s not motivating.

Each of us needs meaning to be motivated.

Thanks for reading my post, folks. As always, I’d love to hear from you. We’ll only get better at this together.

This post originally appeared on my blog at MyCuppaJo.com.