Successful living: redefining living with chronic pain

I would like to make a plea. A plea to stop framing pain as the enemy, a thing to be battled, defeated, beat, eradicated. A thing not to be tolerated, to be vilified and stamped out. Perhaps our emphasis on pain as evil, pain as punishment, pain as suffering is only serving to make pain worse.

Perhaps using warlike, military metaphors is not the way to go when it comes to pain (or health for that matter. Read this wonderful letter to friends and family from a young woman who died of cancer).

And if you think that you’re not perpetuating these ideas, yet find yourself defining successful pain treatment as being pain-free, you may need a rethink.

I’d also like to ask that we stop referring to the body as a machine. As an object with fixable and replaceable parts. We are not machines. We are not cars. (Mike Stewart of KnowPain fame wrote a great article on metaphor and reconceptualizing pain).

There’s gotta be a better way

Might framing the way we think about pain, and health, a bit differently, be more helpful? Might we need to change the way we talk about and conceptualize living with chronic pain? Perhaps if we think about and talk about living with pain differently, all of us — people with pain and people without, healthcare professionals and fitness pros, the media…everyone — those with pain can live differently, too.

There’s a notion in and of itself: perhaps humans can live with pain, and live well at that. Perhaps living with pain is more normal than we give credence to. Perhaps it doesn’t make us weak, less, deficient, in need of fixing or correcting. Depending on where you look, estimates are that between 1 in 3 and 1 in 5 people are living with chronic pain right this very minute. That’s a whole lot of people living with pain. Can we make that ok?

Perhaps we can help them to live well by changing up our language, our goals, our definitions of success, our approaches a bit? Perhaps we can all start conceptualizing pain differently? I don’t just mean patients learning pain science and understanding what pain isn’t, or practitioners getting on board with a biopsychosocial framework, those things are important but are far from the whole shebang.

I’m talking about reconceptualizing how we think about living with pain.

Rather than being at war with pain, can we live with it peacefully while we figure it out how best to move forward? Pain is a part of life, it always has been.

We can be better and still have pain. We can be successful and still have pain. We can have a full, active, meaningful life and still have pain.

Being able to be out taking pictures is a measure of success for me

Evidence and expectations

A physiotherapist friend of mine once said to me that ‘listening in health care is more about waiting to talk then to listen with curiosity about the patients experience and challenges’. That’s been my experience quite a few times.

I think very well meaning practitioners can go into interactions with people in pain only looking at the pain and the evidence base for helping people overcome their pain, too often to the exclusion of actually looking at the person. This is understandable in that the pain is the reason the person is seeking help and evidence should be used for any intervention that takes place. But it’s also misguided.

Pain isn’t a thing. It’s a lived experience that can’t be distilled down to it’s component parts, just as life cannot be. Just as love cannot be. It is an aporia, to borrow from John Quintner.

But we humans don’t do well with uncertainty so we try to make pain, and the solution for pain, certain.

What does the evidence say?

The evidence isn’t all that great, even for the most effective interventions. “Treatment effects are very seldom overwhelmingly obvious or dramatic” (from Testing Treatments, a must read, imo).

We know this. Most effective is a relative term, after all. comparing one intervention against another. It doesn’t mean that the particular intervention works for everyone and it doesn’t mean that if it worked for someone before at a different time, in a different context that it will work for them again, within their current context.

Are we conveying the evidence accurately?

Too often the evidence is presented as though these are fail-proof solutions for pain. That ‘they work’, without the caveat that the positive outcomes weren’t achieved by everyone, that not everyone in a given randomized controlled trial responded in the same ways.

And too often there’s no mention of what ‘they work’ means, what the significant or ‘successful’ outcomes even were. Oftentimes the successful or significant outcomes weren’t being pain-free at the end of the study. No, the outcomes were reduced pain intensity or disability or less catastrophizing, anxiety or depression or improved function, mood or quality of life.

These are all successful outcomes, don’t get me wrong, but are we making it clear that they are? Is it clear to the person in pain that those are the outcomes we are shooting for? That eliminating pain was not, in fact, the measure of success in those studies?

What I see happening

What is too often conveyed to the person in pain, intentionally or not, is that a given treatment is going to make their pain go away. That pain-free is success and everything else is coming up short. So they’re set up to expect that it’s ‘going to work’, an ill-defined concept at best, and then they’re crushed when it doesn’t.

Are are we setting expectations that aren’t realistic, like getting rid of pain altogether, even when the research doesn’t bear that out? When much of the research isn’t even studying that? A reduction in pain intensity is not an elimination of pain, for example. Nor reduced pain catastrophizing or increased function or improved quality of life.

Yet these are all positive outcomes! Wonderful things! Successful outcomes! They can lead to a better life, even if there’s still pain. Isn’t that what we’re all trying to achieve?

What should successful mean?

For much too long my definition of success was being pain-free. I searched for the cure endlessly and that definition of success was reinforced by every new doctor and therapist I went to, be them conventional or alternative. I clung to it with every new promise of a solution to my pain.

I worked my ass off. I was diligent. I did all my homework.

I failed, despite hitting all of the SMART goals set for me. I strengthened my right hip, improved my range of motion, worked on my postures (including sleeping postures, my posture in the car, my posture while sitting…).

But I was never all that weak to begin with. I’d been a freakin’ firefighter who regularly trained with guys twice my size and held my own before my injury. I got my strength back pretty quickly after my surgery. My range of motion was never bad. The usual goal is 90º of hip flexion after hip surgery, mine was at 105º so I could step up to the tailboard of the fire engine. I was doing step-ups to the treatment table, for monkey’s sake.

Weakness and range of motion were not my problem.

Yet still, the expectation was set that once I regained strength and range of motion, I would be pain-free.

I wasn’t

And round and round we go…

Rather than being stoked that I could do step-ups to the treatment table, I became obsessed with my postures and movement to a pathological degree, thinking I had to be doing it wrong or else I wouldn’t have pain because not having pain was the goal, after all.

Because not having pain was success.

And because pain was my only barometer of success or failure, I was failing time and time again, to the obvious dismay of my therapists.

I kept letting them down.

I was a difficult case.

Science-based folks do it, too

Walks like this are one measure of a successful life with pain for me

Those experiences were before I was hip to pain science, but even now, knowing what I know (which is nothing but more than I knew) and knowing a lot of people in the know, I still see this happening, and it breaks my heart and frustrates me to no end because I don’t know how to change it.

It happens amongst those who are knowledgeable in current pain science and practice evidence based therapies, too.

Even though they know…

They know the research so they know that nothing works for everyone, that most effect sizes are small to modest, that there are always people in those studies who don’t improve, and that only a very small amount of folks, or none at all, have zero pain at their conclusion.

They know that for most folks living with chronic pain, they’re going to continue to do so, likely for a while and in some cases a long while.

They even know folks like me, folks who know and understand the science (some who even study and treat it!) but somehow the knowledge didn’t cure them.

They also know that there are those of us who are living well with pain. So they know it’s possible.

(I suspect many still think that I should be pain-free by now or that I will some day get there. That I will be better. I get it. I hope that one day no one has to live with chronic pain, too. But I also want to live in my current reality, not wait for some future possible one, and I AM BETTER. Better doesn’t have to mean pain-free.)

Yet they’re still stuck in that same old battle

Too often they, too, go in setting the expectation that success means pain-free, even if they don’t do so explicitly that’s what comes across. It’s like they don’t want to believe that pain might not be resolvable for everyone. Like they believe pain is still a battle that can and should be won. That anything else is failure.

(I get it, it’s a societal thing, not just a belief amongst practitioners. But it needs to change somewhere.)

It seems like they want to believe that pain-free is not just possible for everyone, but likely. Despite the evidence.

I hear a lot about those who were successful under their treatment(s) of choice, ‘the wins’, and get the impression that they think that because some folks were able to resolve their pain, all folks should be able to do so.

I see pain science education presented as the new fix, even though the evidence doesn’t indicate that it cures chronic pain.

Not to say there aren’t benefits, there are, and plenty of ’em. I’m a fan, understanding what pain isn’t helped me immensely. Neuroscience education can reduce fear, catastrophizing or pain intensity, it can lead to healthier attitudes about pain, improve knowledge or increase movement and performance…but none of those things are being pain-free, so why do we still set that up as the measure of success?

These are all wonderful examples of living better with pain, not being rid of it, aren’t they?

Same goes for any evidence-based practice you want to bring up.

Pain modulation is not the same thing as pain elimination.

Know what I mean?

I want to challenge the way we conceptualize pain — not just the biology of it, the experience of it

We’re not faulty or defective because we’re not pain-free after treatment, no matter the treatment.

Perhaps we’re just like all the patients in those randomized controlled trials who didn’t all respond favorably to treatment.

Or perhaps we’re just like all the patients in those trials who did respond favorably to treatment but the outcome measure wasn’t pain-free. It often isn’t, after all.

Do you see what I’m getting at here?

So can we talk about living with pain differently?

No more battle to be won, which means it can also be lost and that too often is. No more war. No more intolerance for living with pain.

I like this world. Hiking is success for me.

Living with pain is more normal than we recognize. It is a part of many people’s lives. In fact, there are HUNDREDS of MILLIONS of people living with pain right this very minute. We’re not defective, deficient, diminished. We’re not less. Not broken, dysfunctional, abnormal. We’re just people. People who happen to be living with pain. We can be successful and better and all that good stuff, even if the pain is still there.

Can you see us? Can you see what the idea of success being a pain-free life might be doing to us? What a never-ending war against pain might be like to wage when you’re the one living with pain?

Can we define success differently so that there are more ways of winning? More ways of being better? More ways of being successful?

To that end, might living well, living purposefully and meaningfully whether there’s pain or not, be a better measure of success rather than whether or not there is pain in that life?

The world I want

I’d like to see a world where all those outcome measures from all those research studies that aren’t pain elimination (which isn’t even a typical outcome measure!) be emphasized. A world where we can call it a win if we are more accepting of our pain, struggling with it less, catastrophizing less, less fearful, less anxious, less depressed, more active, or more engaged with the world again.

A world where we are considered successful when we are pursuing things that matter to us, loving and being loved, laughing and crying, being of service, empowering and supporting one another, and experiencing life, not just pain.

A world where it’s also ok for pain to be a part of life.

I am successful, even with pain

I’m of a mind that it is entirely possible to live an active, valued, meaningful life in the presence of pain. That it is even possible to love our lives in the presence of pain. That we can be successful and still have pain. We can be better and still have pain. We can live well and still have pain.

We can be pretty freakin’ awesome, strong, capable, loving, creative, kind, funny, supportive, encouraging, kick ass human beings and still have pain.

I am of a mind that there are endless possibilities within our limitations and with our pain.

I’m of a mind that the pursuit of those possibilities is a better measure of our success. What is meaningful to us? What do we want to be doing that we’re not? What steps can we take to get closer to those things?

That’s what I want successful to look like.

That’s how I want successful to be defined.

Who’s coming with me?

As ever, thanks for making this far, folks. I appreciate you sticking it out to then end. And if you just skimmed down to this point, I appreciate that, too! I hope you gleaned something thought-provoking or useful in the scan. I’d love to hear your thoughts on the matter.


Originally published at www.mycuppajo.com on October 1, 2016.

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