My pain didn’t go away as expected. Not as I expected. Not as any of the dozen plus clinicians who treated me expected. Not as the worker’s compensation claims adjusters expected. I was labeled a challenging patient, a “difficult” patient, and punted down the line to the next care provider, the next treatment. The next failure.

It was I who was challenging. It was I who was difficult. Not my pain. Not the situation I was in. Not my suffering. Not the treatments that didn’t work. Not the adversarial workers compensation system. Not the systemic lack of knowledge about the complexities of pain, especially ongoing pain that doesn’t behave or resolve as everyone expects.

I was the problem. Just me.

Looking back, it’s no wonder I was so ashamed of my pain. No wonder I felt that I was to blame. That it was all my fault. That I was the failure.

Words matter.

I was recently a part of an amazing pain conference, the Oregon Pain Summit. It was a conference filled with compassionate, knowledgeable, and empathetic clinicians. A conference where I gave the keynote and moderated a patient transformation panel. Person-centered care was front and center. The weekend provided immeasurable hope for the future of pain understanding and care. And yet, these same terms came up

Challenging patient. Difficult patient. The worst patients.

These terms were not at all said with malicious or hurtful intent. That it happened in this setting shows this is a cultural problem, not an individual problem.

This way of thinking and speaking is the default mode in medicine. It is the water we swim in in healthcare.

There are these two young fish swimming along, and they happen to meet an older fish swimming the other way, who nods at them and says, “Morning boys. How’s the water?” And the two young fish swim on for a bit, and then eventually one of them looks over at the other and goes, “What the hell is water?” ~ David Foster Wallace

Context as a drug: some consequences of placebo research for primary care; Complicating Relationships: The Water that Doctors Breathe

I’ve done it, too. I’m a product of these waters myself. As a firefighter paramedic I referred to patients as frequent flyers, as needy, as difficult. I’m sure I’ve been a part of conversations where we talked about the worst kind of patients.

It was a part of the culture. Part of our own protective mechanisms, perhaps. Our own ways of dealing with challenging and difficult situations. With sometimes dealing with the worst kinds of situations.

What the hell is water?

When these terms came up at the conference, I was empowered, and encouraged, to call it out. To bring attention to the water. To explicitly point out the milieu in which we’re swimming as we navigate the complexities of pain, trauma, suffering, and being human.

We are not challenging patients, we have challenging pain or challenging conditions. We are not difficult patients, we are in difficult situations or facing difficult circumstances. We are not the worst patients, we are experiencing the worst days, months, years of our lives. We are living out our worst nightmares, perhaps living out your worst nightmares, too.

When it is made personal, when it said about us, about our character, and not about what we are going through, it hurts. It hurts a lot.

My speaking up was received in the spirit it was intended: to bring awareness to the water we swim in, to shed light on the culture of which we are all a part.

A culture where patients are so often shamed and blamed for their pain, for not getting better…for not being easier to treat.

Words are not just words—the language we use, both with and about patients, must be chosen carefully in order to care best for the patient.

Andrew S. Epstein, MD: Not Just Words: Caring for the Patient by Caring About Language
The challenging patient checking out Multnomah Falls in Oregon
Multnomah Falls, after the Oregon Pain Summit

We need to change the culture

When treatment doesn’t work, it’s natural to find something to blame. When we face someone or something we do not understand or know how to deal with, it is easy (and human) to assign blame. To blame the patient. To blame the clinician. To blame ourselves, to blame the other.

It’s a zero-sum game.

Thankfully, we don’t have to stay there. The science shows us there are better ways forward. The people who have lived with pain who are living well or have recovered show us what is possible. There is realistic hope for all of us.

One need not attain full physical recovery in order to heal.

Drew Leder, The Experiential Paradoxes of Pain

Our challenges

These are challenging and difficult situations for all: patients, clinicians, and carers alike. These are our challenges, not patient challenges alone (and not just patients who are challenging).

Clinicians go into healthcare wanting to help patients. When they cannot help, I imagine it must be frustrating and, well, challenging.

No clinician wants to feel they can’t help or do any good. No patient wants to feel they cannot be helped, or that they are no good.

In this together

Together, we can move mountains, or at least do some good. We can walk together through these difficult situations. We can face together these challenging circumstances. We can help each other make sense of what is happening and explore possible paths forward.

What is really challenging is moving mountains together!

Bronnie Lennox Thompson has written beautifully on ‘othering,’ and how to avoid it. Maybe there is some of them in us and some of us in them. Maybe there is some of you in me and some of me in you.

We are all human

It is in our shared humanity, shared vulnerability, shared uncertainty, shared hope, that we can find better ways forward. That we can create better narratives and help each other tell better stories. Stories that aren’t so frightening or so fraught. Stories that are more accurate. Stories that make both biological and biographical sense.

We don’t have to have all the answers to be able to recover and heal and move forward. There is so much we can do with what we do know. So much we can do with what we discover along the way.

A challenge for us

It turns out I am a challenging patient of sorts. I do want to challenge the status quo, I do want us to challenge ourselves to change the culture.

It is in our shared humanity, in finding ourselves in each other, that we can shape a more healing culture. A more caring and more therapeutic culture. A culture that is better for clinicians and patients alike.

It won’t be easy. We will be swimming against the current, but together we have a chance to turn the tide.

Read part two…

My exchange with Matt Parselle in response to this post is up next!