Yesterday one of my pain heroes, Bronnie Lennox Thompson over at Health Skills, posted an article that really resonated with me called ‘Deciding When to Say When: Pain Cure? Or Pain Managed? I left a pretty lengthy reply on her blog post, two of them, actually, and felt like they contained some thoughts I should share with you all as well about defining success when it comes to chronic pain.
After reading Bronnie’s post I started thinking about my relationship with pain and how much it’s changed over the years. Early on I had lost my sense of worth, my identity, and had become defined by pain and my perceived limitations. Pain was my sole focus – to the detriment of my relationships, the activities I enjoy, my creativity, my purpose, my meaning.
I was in a constant state of waiting for the pain to be gone so that I could get on with my life.
But then I realized that my life was still going on, even while the pain was there, and that I was missing out on it.
It took a shift in my definition of success and gaining permission, so-to-speak, from folks in the know to get back to living. To get back to being a person, just a person. Granted, I’m a person who has pain but now I am also a person who successfully and meaningfully lives with pain without it overly concerning me anymore. Without pain consuming my thoughts and causing uncontrollable anxiety or worry, without a sense of always having to work toward getting rid of it or making it better to be able to live right now.
When those things are our constant focus, that pain need be gone to be successful, we set ourselves up for failure when the pain sticks around, which is going to happen for a whole lot of us.
The real travesty of pain isn’t the pain part, it’s the failing to live part
Having pain that is not eradicated or ‘cured’ is not a failure. Failing to live a valued and meaningful life waiting for the pain to go away as a much bigger travesty.
I was there for a long time, I know how devastating it can be. It wasn’t until I stopped battling the pain, stopped waiting for the pain to go away, and finally accepted pain as a part of my life that I was able to get on with living.
And accepting the pain didn’t mean I gave up or conceded to it. It meant pain was no longer a battle to be won (that mindset hurt me for too long).
Acceptance meant making space for pain so I could make room for all the other things in my life that matter to me – my husband, my dog, my family and friends, my writing, getting out into nature, getting back to trail running, socializing, photography, traveling, being active, volunteering, sharing my story and trying to help others change their pain experience – so I could get on with living.
Not waiting, not fighting, not failing…living.
Once I made this switch in how I viewed my pain experience, once I removed the negative valence from the words ‘chronic’ and ‘pain’ and just accepted them as a part of the human experience and not something that need be overcome or fought or ignored in order to live meaningfully and successfully, the meaning of my pain changed. That’s success! The pain no longer meant that I was less than I was before or that I was less than others who have overcome their pain. The pain no longer meant that I was weak or broken.
The pain no longer meant that I needed to suffer or fight or concede – those were no longer my only options.
Once I understood the nature of pain a bit better, once I knew that I wasn’t under threat even though the pain was still there, the pain stopped being a limiting factor. I felt comfortable and confident in pursuing my life again. Living my life again. Enjoying my life. Changing my understanding of pain meant that I could pursue what matters to me, even when pain is still present.
I had to stop defining success as the pain being gone in order for that to happen, though. Because what if the pain is never completely gone? Despite all my knowledge and all my best efforts, that’s a real possibility. And even if it’s gone at some point in my future, its not gone right now and I want to live right now, dammit.
So pain being gone could no longer my measure of success and how I was living my life became my measure of success in it’s stead.
It took some of the pain’s power away when I no longer felt like I had to get rid of it. It no longer defined me or limited me. It no longer controlled my days, my thoughts, my actions. I was no longer just a person with chronic pain; I was a person who experiences pain, just as I experience joy and happiness and sadness and frustration and calm and anger and curiosity and stress and excitement and anxiety and hope and pleasure and disappointment and laughter and love.
I am just a human with human experiences, one of which is pain. By no means does that one experience define me, just as no one of the others does. I am a combination of all of my experiences.
And I like being human! I like having experiences! So I want to have as many human experiences as possible. I want to live a meaningful and valued life, pain or no pain.
That’s success. At least to me.
Some thoughts for practitioners
I know a lot of practitioners have already changed their definition of success when it comes to treating people living with pain, but I also know there is still a pervasive sense among health care providers, and anyone working with folks with chronic/persistent pain, that success is measured by ‘curing’ pain. That success is being pain-free or reducing pain intensity. I understand the desire, but it’s not helpful nor realistic.
We need to come to a new understanding, together, both those living with pain and those who treat them (or love them). Success isn’t a cure, it isn’t being rid of pain, success is a life fully lived. A cure for chronic pain would be great, I’m in no way saying it isn’t. But we can’t wait for the cure to get on with life, we need to get on with life while working toward a cure.
So we need a different way of talking about pain, both as a society and, perhaps more importantly, between the person living with pain and their healthcare provider or pain treatment team. We need a better way of talking about pain and what ‘success is’ between the person in pain and their loved ones at home and their coworkers at their jobs and their friends and acquaintances in their lives.
We need to change our expectations, bringing them in line with reality, with the current understanding of pain science. We need to exchange knowledge, ideas, and experiences on a level playing field so we kind find mutual validation and understanding and discover better ways of moving forward.
We need to empower folks to live well with pain, to pursue the endless possibilities within their limitations. After all, no matter how great a doctor or therapist or pain team is, they can’t be there every minute of every day for the people living with pain. They can’t be there for every flare-up, they can’t be there for that person’s life.
Only we can change our experience
The person in pain needs to be the driving force behind all of this or they’re not going to experience much success. I was a passive seeker of relief for too long, searching for the doctor or surgeon or therapist or treatment method that would fix me. That would make the pain go away. It wasn’t until I became an active participant in my own experience, only when stopped looking for fixers and started seeking facilitators, that I was able to really change my experience of pain and my life.
To move forward, we have to change the conversation and the expectations. We have to move from people being passive recipients of care to being active agents in that care. These conversations can start during the patient/practitioner interaction, we can start to redefined success, to set realistic expectations, to develop plans – together – to move forward, to move toward an active, valued, meaningful life.
If the practitioner is always the all-knowing and an unquestioned expert, the patient will always be passive, we will continue to perpetuate some of the problems we are facing ourselves.
Hopelessness or hope?
Some practitioners have raised concerns to me that saying ‘right now there is no cure for pain but there are things we can do to change it’ will have their patients walking out of their office or clinic with lost hope, thinking ‘there’s nothing they can do for me’. But I don’t think that gives the patient enough credit. Yes, it’s true that patients are seeking treatment so their pain issues will be resolved, they do want a cure.
But they keep being led to believe there is one, so why wouldn’t they?
If we keep fostering this false hope and the ‘cure’ doesn’t work, yet again, and they have failed, yet again, what happens next? They have yet one more reason to lose hope. One more reason to feel defeated and depressed, to go to some deep, dark and scary places.
At least I did. When I kept seeking my pain solution in the next person or a method or a treatment that promised to fix me and those persons and methods and treatments didn’t work for me, I felt I failed as a patient. Again and again and again. I felt like a disappointment, to myself, to the person trying to treat me, to my friends and family, to my coworkers and employers. I felt like I was doing this whole pain thing wrong because the pain was still there.
What really needs to be treated?
Why are patient’s seeking treatment? Is it because the pain is unbearable? Or is it because life has become limited because of the pain, because life has become unbearable?
How much of this is because of the of the pain itself and how much of it is because of what that experience means to the person? What if they are seeking treatment because they want to get back to work, to playing with their kids or grandkids or dog, to running or hiking or dancing or sparring, to getting out and socializing, to playing golf, to drinking with their buddies on Friday nights?
What if they’re seeking treatment so they can live there lives again?
If that’s the case, and it’s the limitations and the fears and the worries that need be addressed, isn’t it better to be open, honest, and realistic with that person? Isn’t it it better scenario to explain to a patient that chronic pain is complex and right now there is no cure for it, no magic pill or therapy or surgery, but that pain is not always threatening, especially when it’s chronic, and that means they can get back to living? Isn’t it better to give them permission to get to doing the things that matter to them, rather than making them wait for the pain to be gone to do so?
Isn’t it better to explain that there are many factors that contribute to chronic/persistent pain and that while sometimes not all of the pain will go away, that doesn’t mean that they’re damaged or broken and in need of fixing? That they’re not weak or less or diminished in some way because they have pain?
Isn’t it better to explain to them that they’re strong, resilient, adaptable beings capable of changing their experience of pain and living a meaningful, active life? To explain to them that because there are so many things that can contribute to pain, there are lots of entry points into changing the experience of it and that allow for living well in it’s presence? And that when they change some of those factors within their control, the pain can become less prominent in their lives, having less of an impact, thus allowing them to pursue the things that matter to them?
Isn’t that better than giving false hope and setting folks up for failure?
Giving patients credit
I think patients will get this. I think patients just might walk away thinking “the doctor/therapist actually listened to me and took the time to explain to me what pain isn’t and gave me all these resources for me to be able to live with my pain differently that will let me get on with the things I want to do. My pain might be around for a while but it no longer has to limit my life. I now understand that this pain isn’t something I have to fear or worry so much about and I have me permission to get on with life while still holding out hope for one day overcoming pain’.
To me, being given realistic expectations is much more important than being given false hope, which can be so much more harmful to the person living with pain, though it may make the health care provider feel better to provide such hope (not a dig, just my perception). For patient’s whose pain persists, those given realistic expectations have been given the education, tools, and ‘permission’ to deal with it and get on with life while those given false hope just keep seeking that next doctor, that next method, that next fix that will ‘cure’ their pain and, in the meantime, they put life on hold.
Being truthful and realistic is not painting a dismal picture – it can actually give patients hope and reassurance. They are not failures. They are not to blame, just as the treatment providers are not to blame. Once I accepted that the pain might not go away, I was able to start living again. It doesn’t mean I’ve given up hope of it being gone someday, I’m just not waiting for that day to come any more to get on with it.
It’s not an easy conversation to have. It’s not a short one or a singular one, either, but it’s a necessary one if the patient has any chance of living their life.
We need to stop pussy-footing around difficult conversations about taking personal responsibility and being active participants in our health and our lives. The more we continue to foster the notion that we have to go to the doctor to fix all that ails us, the sicker we’ll all remain. We need to be empowered to manage our own health, our own lives. We’re the only ones living in our bodies/minds 24 hours a day 365 days a year.
Do people want to hear it? Not always. Does that matter? I don’t think it can, we have to talk about it.
I’m not saying to be crass or harsh, but we need to be honest and face these truths together so we can start coming up with some better solutions, our current models aren’t working. Well never get past the passive medicalization of pain patients if we don’t start approaching this differently. And people with pain need to be a part of these conversations, not just those who treat them. And not just in the clinic or while they’re seeking treatment, either, but at professional conferences and workshops and meetings. Patient voices need to be heard and regarded.
We need to do this together, all of us.
If we are to be successful in changing pain, we need to stop thinking patients can’t get this stuff, that they won’t understand or won’t do it. When practitioners go in with that mindset, that belief, that expectation, influences the results. It perpetuates the prophesy. There are patients out there who want to play a role in driving how pain is treated, I am one of them. I know there are plenty more, but our voices continue to go unheard, even by those with the best of intentions.
I’m not saying it’s going to be easy, but it needs to start. What’s our other option? Continuing this same course?
Thanks for reading my post, folks! As always, I’d love to hear your thoughts. This post is important to me, I think these conversations need to be had so we can figure out how to move forward. And patients need to be a part of the conversations.
To end with, this is what happened when I stopped waiting for the pain to go away to live my life. That’s success :)