I have had a lot of interactions with folks over the past couple of weeks about the changes that need to take place, and that are taking place, in the treatment and management of chronic pain and I’m ecstatic! I’ve heard amazing stories from people who are successfully managing their pain and truly LIVING their lives.
I’ve also heard stories I can very much relate to from people who are just now being exposed to some of the research, ideas, and notions about what pain is and what it isn’t, about how we benefit from changing our definitions of success when it comes to living with/managing/overcoming chronic pain, and how to go about a living a valued, meaningful existence, even in the presence of pain.
The reality is that pain is here right now for many folks. Even if a person’s chronic pain is resolved at some point in the future, right now there is still a life to be lived. Their lives shouldn’t be on hold, waiting for the pain to go away, because of it.
There is a great deal we know about pain and health science now that can help folks to understand pain differently and help them to become active agents in changing their pain, their narrative, and their lives.
This post is a long one, but it’s helping me to define what the hell I’m trying to do here. And I promise future posts will be broken down into more manageable chunks!
For the folks with chronic pain
We are conditioned to believe that we will be fixed by medicine, that if something is wrong, our healthcare provider will fix is. But chronic conditions are more complicated than that because humans are more complicated than that.
Being a passive recipient of care doesn’t work.
We are not machines with replaceable parts, we are more of an ecosystem, or a garden if you will, with lots of interrelated and interdependent elements, and what happens in one element can affect other elements, which can then circle back and further affect the first element where it all started.
The complicated nature of our being, and our pain, can seem overwhelming at first, but it’s actually a great thing. The fact that there are so many sociological, psychological, and biological factors that influence the experience of pain gives us many entry points into our systems to positively influence that experience and change our pain.
And those entry points can help positively influence all aspects of our health and our lives; that’s pretty astonishing stuff, ain’t it? And even more astonishing is that we have the power to make those changes.
The awesomeness of being human
We are awesomely, fearsomely at times, complex beings who we are always changing and adapting. And we have the ability to influence those changes and adaptations because we are bioplastic beings; making changes in one area of our being, or changing our interactions with our environment or other beings, can influence changes in all the other areas of our our being, of our own ecosystem.
Our thoughts can affect our physiological responses, our environment can affect our thoughts, our previous experiences can affect our beliefs, our beliefs can affect our behaviors, our behaviors can affect our thoughts – there’s a near infinite number of interrelated and interdependent relationships that all feed into and off of one another. There’s no one element of our being that operates in isolation; the whole ecosystem matters.
From the smallest movements to the greatest feats of human strength, from idle thoughts to world shattering ideas, so many things are taking place to make it happen. Every bit counts, from our outermost skin to our innermost cells, from our remembered personal histories to our thoughts and expectations about the future. And we can tap into our systems at various levels to change our experience of pain.
WE can. Us. We have the power to make significant change, to tell ourselves, and the world, a better story about who we are and to live that better story.
Some of the things that have helped me most are pain science education (understanding that pain doesn’t equal damage was life-changing for me and unlocked the door to all these other successful strategies), awareness of myself and the world around me, acceptance of the pain (without conceding or giving up), movement, overcoming misconceptions and fears surrounding my pain, gratitude, quietude, being out in nature, managing stress, and expressing my creative self.
Did I mention movement? That’s one of the most important things we can do for ourselves everyday, whether we have pain or not. (motion is lotion!) And movement outside is even better.
The least movement is of importance to all nature. The entire ocean is affected by a pebble. ~Blaise Pascal
But number one on my list would be loving and being loved, and it may have been the hardest to get to in my darkest times. When we’re in pain it can be hard to love ourselves, it can be hard to be loved by others, and it can be hard to love.
When we hate ourselves or what our lives have become, when we feel we’ve been dealt a bad hand, when we long for (and continue to grieve for or, conversely, rage at) the days before pain – when we plain just don’t feel ourselves – we can get stuck there for a really long time. I kept hoping for someone to fix me so I could love myself again. So I could be my old self again.
Becoming an active agent in changing pain
The biggest realization for me, though, was that nobody else could fix me. There was no pill, no therapy, no surgery, no method, no person that could address all of the complexities of my experience of pain.
It was a hard reality to face but once faced, it offered me such freedom. I didn’t have to keep searching; the search is exhausting and disheartening and never ending. I didn’t have to keep waiting for the answer in order to live my life again.
It also took me realizing that I wasn’t going to be my old self again and that that was ok, because I wasn’t broken, fragile, or damaged goods. I wasn’t unworthy. It took me realizing that I didn’t need to be fixed, that I was strong, capable, grateful ,and loving. That I was worthy. That I was still giving and could still contribute to the world around me. That I was still me. Sure, it was a different version, but it was still me.
And me is pretty alright.
What I needed was to figure out how to live within my current reality, within my current set of circumstances. What I needed was to start living my life again, not my old life, this life.
For the people in pain out there…
I want to help you to come to that same understanding, that same belief that you are pretty alright, even if you still have pain. Hell, you’re not just pretty alright, you’re downright awesome. You’re strong, capable, beautiful, intelligent, creative, loving, worthy human beings who don’t have to wait for the pain to be gone to get on with living, to get on with pursuing the things that matter most to you.
To get on with being who you are, right now, pain and all.
For the healthcare providers and folks who work with pain patients or clients
The other thing that has me so jazzed lately is that I’ve also been contacted by a number of practitioners who let me know that they appreciate my perspective, some of whom had some really great questions of me and we had some pretty great discussions. It’s these types of discussions that need to keep happening!
Our best way forward in making lasting and meaningful change in the world of chronic pain is by all of us being at the table and engaging in open, probing, honest dialog. Patients need to be a part of the conversation if they are to stop being viewed (by providers, patients, and society alike) as passive, dependent recipients of care.
We need to be active participants in our own pain management. Not only does this reduce the burden on the health care system, and the personal onus that practitioners feel to ‘fix’ people in pain, it also allows the person in pain to start living their valued, meaningful life RIGHT NOW, even if the pain is still there.
Pain eradication needn’t be (nor shouldn’t be) the definition of success. Living a valued life is the definition of success.
People in pain and healthcare providers: a partnership, not a one-way street
To do so, to truly live, we as patients we need to be active agents in changing our relationship to, and the meaning of, our pain. We need to stop suffering and start living. We need to be able to tell a better story, to ourselves and to the world. But in order for us to take this on, we need to be trusted and respected as an equal part of the patient-healthcare provider relationship. This is a partnership, and the patient has the most at stake so they should have a say.
And someone should have a listen to that say.
If patient’s aren’t empowered to actively manage their own pain and live their lives, if they always feel dependent on someone else to fix them when they’re in pain, we’ll all continue to struggle to see long lasting success on both sides.
Through mutually trusting relationships with providers, education in pain science, and evidence-based practices and skills training that help patients to pursue and succeed at that which is meaningful to them, we have the opportunity to take HUGE strides forward.
I know time is an issue. Billing is an issue. The current way our health systems are set up is an issue. I know it’s not as easy as ‘say it and it shall be done!’. But there are things that can be done, even with the way things currently are.
The power of listening, validation, and reassurance
Some changes are relatively small, but also huge, like just listening to the patient and encouraging the patient to explore the nature of their pain – not just the quality of sharpness or aching or shooting, or a 1-10 scale or series of faces, or making circles on human diagram – actually talk about their pain and how it’s affecting their lives.
That’s where the pain is, it’s not in the tissue, it’s not in the circle on the diagram, it’s not a 3 or a 7 or a 10 or angry face on the chart, it’s in their LIVES. It’s in their very being. It’s in who they are.
Pain is in what they can’t do that they want to do. Pain is in their fears about the future, their worries about finances, their strained relationships, the uncertainties of their condition, their identity, their story.
“When you listen, it’s amazing what you can learn. When you act on what you’ve learned, it’s amazing what you can change.” ~Audrey McLaughlin
You don’t have to be a psychologist to help someone recognize that these areas of their lives are influencing their pain. I certainly wish I recognized it before I was in constant daily pain for over 2 1/2 years before finally learning about it from a book (Explain Pain). A book that I purchased on my own after coming across pain research in my studies, rather than learning it from the people who were treating my pain.
I was never exposed to these information from my occupational doctor, my orthopedic consults (2), my orthopedic surgeon, my physical therapists (4), or my worker’s compensation case managers (4).So many opportunities to make a huge difference in the course of my pain that were missed. So many opportunities where this type of interaction could have been readily incorporated within a framework of evidence based practice within each provider’s specialty.
But the pain was always searched for in my tissues, in images, and in qualified medical exams that tested my strength and range of motion. No one ever told me what pain is, though. And no one told me how, and why, it can stick around in the absence of tissue damage.
Common misconceptions and fears that are still being perpetuated
For too long I understood my pain as being an injury, as being a result of tissue damage. Initially it was, I did have an injury. And I had hip surgery about 13 months later. But the pain persisted long after my surgery healed, at which time I received various explanations for the pain that we’re still very much tissue based: the scar tissue from my surgery or the annular tears in my lumbar vertebrae or my SI joint dysfunction. I was even told once that my spine was twisted on it’s axis and that was what was causing my pain.
At the same time I also understood my pain (and the underlying tissue damage I thought had to be there) as something that was solely biomechanical in nature, which led me to believe that it’s persistence was my fault because I didn’t have correct posture or because I was moving wrong.
Once movement and posture were pathologized for me – which still happens in many doctor’s offices, physical therapy clinics, gyms and studios, chiropractic offices, and massage clinics – I entered a downward spiral of moving less and less in my efforts to try to maintain rigid ‘correct’ postures and control my every movement so that I wouldn’t increase my pain or do something that would necessitate another surgery.
And I always felt dependent on others to set it right, to get me back aligned and balanced, to fix me.
Some things folks in pain need to know
My trajectory may have been a bit different had I known otherwise, had I known more of the science behind the pain, especially if I had known that pain does not reside in the tissues and that the state of the tissues is only one bit of information among many bits of information that influence the pain experience.
If I had realized much sooner how much other areas of my life were contributing to my pain – my stress levels, my unfounded fears surrounding certain movements and postures, my worries about the future, my loss of identity and sense of purpose, my social withdrawal, going through a stressful and heartbreaking medical retirement, being caught in the infuriating work comp system – I may have been able to change my pain much sooner, and much more readily.
It took another few years of learning this information and then trying to integrate it into my life, figuring out how it fit into my story, to get to where I’m at today. It took going to the San Diego Pain Summit to start putting all the pieces together for me. It took a long time because I didn’t have a guide, I was navigating these rough waters on my own.
I don’t want others to navigate on their own. I don’t want them to feel alone and confused and uncertain and afraid. I don’t want them to feel powerless to change their pain or dependent on others to do so. More than anything, I want to shorten the length of time it takes other folks in pain to get here, to get back to their lives and to living.
The power of the ability to express ourselves without shame or fear
A huge step in that direction that healthcare providers can play a large role in is simply allowing their patients to give voice to their fears, their worries – the strains on their current existence – as that opens up the opportunity for you to reassure them, to provide a bit of pain education, to validate their pain, and to let them know that what they value can still be pursued, even with pain.
You can assure them that wholly awesome, purposeful, active lives can be lived by changing their experience and understanding of pain, and that you’re there to help them do so. That’s powerful stuff! Sometimes more powerful than many assessments or hands-on therapies may be (and which will, in turn, enhance any of those hands-on therapies).
By changing the meaning of their pain, patients are given a sort of permission to shift their focus away from the pain, because now they understand that it’s not something they have to worry so much about so they no longer need to devote all their resources to it, and shift more of their focus to their lives, to all the things that they want to do and can do, to all the things that matter to them. Then they can start working toward those things within a framework of evidence-based therapies and supported by self-care strategies.
That’s the magic! That’s success!
I know it’s not going to be an overnight success. For me it was more of a dimmer switch, shedding a bit more light on the topic over time until finally I felt like it was clearer, until I finally felt that I could see it and understand it and live it.
Finding, and perhaps redefining, meaning
If we can start building relationships and figuring out what is meaningful to the person in pain and what they feel like their missing in their lives as a result of the pain, we can define a better measure of success for both patient and practitioner. If we can start providing an understandable and relatable education about pain, we can stop leaving patients with so much uncertainty and assure them that their pain is very real but also very manageable. We can start achieving that newly defined measure of success.
The uncertainty can be worse than the pain because then it is left to the patient to imagine what is going on and what will happen. When patients are told their imaging is fine, which many practitioners think is good news, it can actually be much more stressful for the patient. If the images are ‘fine’ they may understand that to mean there is no reason for their pain, that their pain shouldn’t be there, that it isn’t real.
A little bit of pain science education, validation, and reassurance goes a long way; a much longer way than we may realize.
The role I want to play:
I want to keep the dialog going between patients and practitioners, I want to be a bridge of sorts. Multiple bridges. As such, I can’t encourage those sorts of interactions and questions, from both patients and practitioners, enough! Give ’em to me! That’s why I’m here.
For folks with pain
The primary goal of this blog (and the book which I’m struggling with the overwhelmingness of right now!) is to help you to understand pain a bit better and to help you engage in your life again, to help you get after it, to pursue what matters to you by making space for the pain so that there is room for everything else, too. For the important stuff, the stuff that you value, be it your relationships with family and friends or something your passionate about or moving more or being more creative or pursuing a new career. You know, just LIFE.
It’s also important to make space for the pain, too. For sadness, frustrations, anger, fears, and worries. It’s ok to be these things on occasion. Pain does suck. But it doesn’t have to define us, it doesn’t have to be everything. But we can’t just try to avoid or ignore these things, either, they’re a relevant and important part of life, too. Sitting with these types of emotions for a bit, acknowledging their presence and allowing them to happen without fighting them or trying to ignore them, can help us make space for them and get some distance from them, we can take away their ability to knock our lives off balance and send us into a downward spiral.
By allowing for all aspects for our being and our lives to be acknowledged, we can figure out how to move forward with them. We can help keep our lives in balance and in perspective. We regain control, the pain doesn’t control us.
Awareness is a powerful thing..
For healthcare providers and folks who work with chronic pain patients or clients
The parallel goal of my writing is to provide an informed patient’s perspective to practitioners in the hopes it sheds light on what some of what your patients may be going through but that they may not be able to give voice to.
I’m a patient with unique perspectives, having seen all variety of pain in my years as a firefighter/paramedic to experiencing my own injury, surgery, and persistent pain issues which led to my medical retirement. I had to go through work-comp, I had to deal with a loss of identity as a firefighter, with financial stresses, with social withdrawal and isolation, with debilitating pain, fear, and anxiety.
I was in a very dark place for a couple years. But I can now give voice to some of those things in a more reflective, cohesive way that I think provides valuable perspective that shares a lot in common with other folks in pain and who’ve gone through similar trials.
My perspective is also informed by going back to graduate school and earning my M.Sc. in kinesiology, with an exercise psychology emphasis. My undergraduate work and first graduate school stint was in biopsychology and I’ve studied the biopsychosocial nature of pain for the last two years.
It was that study and my exposure to the work of Lorimer Moseley and David Butler that changed my life, that exposed me to a new way of understanding my pain and a better way of telling my story, both to myself and to others. And through Moseley, whose keynote address drew me to the San Diego Pain Summit earlier this year, I was also introduced to a a variety folks in the world of pain science that help me to keep questioning, keep researching, keep experimenting (n=1), and keep talking about all of this.
So I hope through those perspectives (and admitted biases) I can be a resource for healthcare providers and practitioners to not only read themselves to gain insights from a chronic pain patient who is actively and successfully changing their pain, but also to share with their patients, enforcing some of what they are teaching from a fellow patient’s perspective.
That’s where I’m at.
So that’s why I’m here. I want to continue these discussions. I want to continue engaging in dialog with folks from all sides of the pain equation. I want to bring together folks in the pain science world with patients living in a world of pain so we can come up with solutions and ways forward together.
This is my call to action. Or maybe it’s a manifesto. I don’t know, but I do hope you’ll join me as I figure it out!
Thanks for reading my post, folks! It ended up being a bit of a manifesto, I apologize for the length. I’m still working on the brevity thing.
I would love to hear your thoughts, questions, concerns, frustrations, recommendations – whatever you got! I want to keep these discussions going, I think they’re ever so important.
If you like what you read and think someone you know might like it, too, please share with them!
And really, I do promise shorter posts in the future. No, really. I mean it this time.