Not just happy to be here: power and pain and pain advocacy...

We have to interrogate the roots of the problems we face if we want to move forward toward more equitable and just pain research and care.

Power is everywhere! That was said by Karime Mescouto at the San Diego Pain Summit in February, and by Gaynor Watson-Creed at the Canadian Pain Society annual meeting a couple weeks ago. Power. Is. Everywhere. In my pain advocacy and patient partner work power dynamics have recently been brought to the forefront and me and my pain peeps have been dealing with SO much nonsense. The curtain has been pulled back in some spaces, and there’s no hiding how little we are really thought of by some folks in positions of power.

It can make this work exhausting, y’all.

Power is also a theme I’ve been tapping into as I go down a Ren rabbit hole. Have you heard of Ren? He’s a once-in-a-lifetime artist who lives with chronic illnesses. So much of what I try to capture with too many words Ren has captured through poetry, performance, art, lyrics, visuals. He has found a way to capture the lived experience of illness so profoundly and so truly, it’s remarkable. In Sick Boi in particular, Ren brilliantly displays the power dynamics inherent to seeking care.

How can you sit there with that smile on And tell me that I’m sick?

Ren, Sick Boi

I’m not going to overly analyze Ren’s work here. The power in his music is what each of us take away from it, our own interpretations and resonances. Yet I have been so profoundly impacted by him and his art that it’s going to bleed through these posts on power and knowledge and justice and pain. Power is always political, and art has always been a way of speaking truth to power. It is why we need more humanities education for health professionals, for all of us, not less. Art, music, literature, it can all help us to better understand the human experience (for the super nerdy, check out this collection on The Body Politic in Pain).

If we’re not afraid, we can’t be brave

In 2022 at SDPS Uchenna Ossai said we have to be brave enough to challenge the status quo everyday forever. That may sound scary, but if we’re not afraid, we can’t be brave. For a long time, I was not brave. I did not fight the status quo, rather I worked my ass off to uphold it and be accepted and elevated within it.

I am not alone in that. Many of us fight to uphold systems that do us, and others, harm. Why? I’m still exploring this, but will share some early thoughts.

Growing up in a blue collar household in metro Detroit one of our values was toughness. You don’t complain. You don’t see a doc unless there’s bone showing. You don’t ask for help. All of that is weakness. I was an athlete, a pretty decent one. And I played through many an injury, including an entire fastpitch softball game at first base after breaking my nose in pregame warm-ups. I had to bunt every at-bat, my nose was so swollen I had to face the pitcher head-on.

I also experienced some pretty significant traumas while growing up. Traumas that led me to build up armor around myself. Armor of toughness and badassedness. Of never being weak. I learned early that I needed to protect myself. And that if I was one of the guys, maybe the guys wouldn’t hurt me.

Of all the things trauma takes away from us, the worst is our willingness, or even our ability, to be vulnerable. There is a reclaiming that has to happen.

Brene Brown, Rising Strong

When I became a firefighter. I continued to see pain as weakness, needing help as weakness, vulnerability as weakness. The last thing I wanted was to be seen as soft or gentle. To be accepted, I had to be one of the guys. Being a woman was just no good. Women were too untrustworthy, weak, fragile. Too emotional. Hysterical. Too much of a threat. A threat we would prove otherwise. A threat we would succeed. A threat we would speak out against the things we saw, the things we experienced.

Just happy to be here

Instead of being brave and challenging the status quo, I upheld it. I held my tongue when racist, homophobic, sexist, or misogynistic comments were made. I withstood harassment with a smile and a laugh. I swallowed shame and pushed down my values and was proud that I was accepted as one of the guys. Just happy to be here. Just happy to be accepted and respected. (Or so I thought at the time.)

I was not brave.

As one of twenty-some women in a department of nearly 1000 firefighters, a department where I can count on one hand the number of shifts I worked with another woman, I was all about my armor and self-preservation. Tough. Badass. One of the guys.

Any misstep on my part, any show of emotion, any calling out of those I worked with, would just prove all the most damaging theories about women in the fire service right. Weak, irrational, incapable. Trouble.

And I wanted power too. I thought getting along just to get along - with a smile - was the way to get it. I bought into the narrative that women didn’t belong, that I didn’t belong, that we had to be exceptional and work twice as hard to maybe get half the credit. I thought I had to be one of guys in order to be successful. I thought I wanted to be one of them.

I was SO wrong. I’m compassionate with my self of that time, but still I wish she would have been braver.

Vulnerability is not weakness

It took a minor injury that morphed into life and world upending pain to make me question the narratives I had believed all my life. To show me that vulnerability is not weakness. That toughness is not strength. Being vulnerable, asking for help, sharing my reality, facing my shame, all took more courage and strength than sports or firefighting ever did.

Being a badass took on a different meaning.

It is wisdom gained only after the battle. When you realize the fight isn’t helping, that pain or illness isn’t the enemy and that in fighting it you’re only fighting yourself. Accepting that was radical for me. And taking off my armor was the bravest thing I’ve ever done. (I say that as though all the armor is off, it’s not. And sometimes I put it back on and become rigid and tense and angry and want to fight everybody. It’s an ongoing dance.)

Taking off my armor was terrifying. And crucial. It is what allowed me to walk a different path, to navigate the new and unfamiliar terrain of chronic pain. And without all that armor on, it became easier (Hi Ren speaks so powerfully to this). I could begin to see a way forward as the malignant mist of pain began to lift. While there were still shadows and darkness, there was also light, hope. I could see the world around me once again, see possibilities again. I could live in the world once again. That held it’s own terrors after being isolated and withdrawn into the shell of my former self for so long.

The softer, gentler, more compassionate me WAS brave.

Softness is not weakness. But being soft and gentle with myself does not mean I will be soft and gentle with the status quo. Coming to accept and move forward with my pain does not mean I accept all of the social, political, structural, and systemic issues that contribute to pain and suffering. I will not accept epistemic injustice and the devaluing and discrediting of the knowledge that comes from lived experience. I will not accept stigma and discrimination and racism and homophobia and ableism and all the rest. I’m gonna be hard as hell in this fight for justice.

Banff, Alberta Canada (location of the CPS annual scientific meeting I recently attended)

It may be easy to dismiss the earlier example as just being a bunch of firefighters, but the same shit is happening in my current advocacy roles, too. In academia, in professional conferences and meetings, in those ‘civilized’ spaces. There’s a through line, a common thread.

The same power dynamics are at play.

I have smiled and laughed my way through sexist comments by esteemed researchers. I have internalized worthlessness when I’ve been dismissed as too emotional, too subjective. Not an intellectual. Less than. Just a patient, and a woman to boot (we’re all hysterical, don’t you know, just look at me ranting and raving over here). I’ve been dismissed and discredited and treated with disdain by people with power over me who demand my respect.

And in these spaces, too, I want/ed to be accepted. Respected. And thought I should go along just to get along - with a smile - to get me some power, too. I thought I had to be just like them to be successful. I thought I wanted to be one of them.

I was wrong, yet again. And this is very recent history folks. It’s not even history.

The cycle continues. It’s the same shit!

And when I do push back, yet again I am proving all the most damaging theories about pain advocates right. Weak, irrational, incapable. Too emotional, too subjective, too opinionated, too negative, too unruly, too loud. Trouble. When we push back, when we fight for equity, when we point out injustice, they can sit back and say, see, we were right, we can’t work with them.

This is how they try to keep us in line. Keep us in our place.

Get in good trouble, necessary trouble

The more I learn about power dynamics, the more I interrogate the dominant discourse and scientific meta-narrative that Ericka Merriwether discussed at SDPS, the more I see all these through-lines. And the more I see these through-lines, the more forcefully I want to challenge the status quo everyday forever. The more forecefully I want to push for more equitable, just, and ethical pain research and care that includes us - all of us. The more I want to smash the tables we’ve been invited to and build our own damn tables that are collaborative and compassionate and communal.

Speak up. Speak out. Get in the way. Get in good trouble, necessary trouble…

John Lewis

The more I learn, the more I want to cause good trouble, in the words of the late great John Lewis. I’m sorry it’s taken me so long to get here. I’m disappointed in myself. I grew up in a culture where it was Detroit vs everybody, after all. Yet I also internalized views that we weren’t worthy. We were trash. We were too uneducated, too poor, too loud, too unruly, too untamed, too unsophisticated, too ‘uncivilized'.

It’s the same dominant discourse all over again. And it’s bullshit.

I’ve had to keep proving my worth, my trustworthiness, my humanity, over and over and over again. I have to keep fighting for legitimacy and to be taken seriously. I’ve gone from proving myself as a firefighter, to proving my pain was real in the work comp system, to proving I have something of value to offer in the ‘professional’ world of pain.

After a lifetime of becoming more educated, being quieter, following the rules, being tamed, ‘knowing my place’, I’m still not accepted. It’s taken me this damn long to see I never will be. That we don’t have to uphold the systems that want to keep us down.

I’m tired, y’all. I’m sure you are, too.

After a lifetime of doubting my worth, I’m trying to step into the knowledge that I am worthy because we are ALL worthy. There are millions of us in this same fight. I’m not just talking about people with pain here. There are millions of pain researchers, clinicians, academics, health professionals - PEOPLE - who face the same bullshit.

Too many in power - and too many people trying to get that power - think too little of us. The millions of us who are othered, gaslighted, distrusted, diminished, denigrated, discredited, disdained, dehumanized, despised, and discriminated against. Ibram X. Kendi recently wrote an excellent piece titled The Crisis of the Intellectuals: Traditional notions of the intellectual were never meant to include people who looked like me or who had a background like mine that speaks to it better than I ever could.

Power is everywhere.

These institutions, these systems aren’t broken. They were built this way. And too many of us have long been excluded from their creation and evolution. They weren’t built for us, yet we are tasked with holding them up. We are bricks in the foundation.

As Gaynor Watson-Creed said at CPS, we didn’t create this reality, we inherited it, AND we can do things to prevent it’s continuation. This is all of our fight. I no longer want to be invited to a seat at the table. I no longer want to be accepted by those who think so little of us. I want to take all those bricks and build something new.

Get it!

The best part of the Canadian Pain Society’s annual meeting was the pre-con retreat Melanie Noel put on for her lab and some collaborators. My brother-from-another-mother Keith Meldrum and I did a fireside chat and engaged in deep meaningful discussion with the other humans present. We purposefully did not share titles, just thoughts, ideas, experiences, stories, insights, challenges. We shared our selves.

When we come together around a table that WE build, the more power we have to fight the status quo, the dominant discourse, the harmful meta-narratives. The more we can make real change. The more we can create a new reality that values everyone, with policies and systems and practices that benefit ALL of us, not just some.

When come together, we are so much more powerful. I look forward to the journey with all of my fellow rebels.

I’m gonna close out with more Ren - Get it! Power.