Trauma and Pain

From anger and resistance to hope and possibility

One of my favorite memories of 2023 was spending time with my amazing friend Melanie Noel (who is a researcher, a child psychologist, a mom of triplets, a renegade, and an amazing human) in Calgary and at the Canadian Pain Society’s Annual Scientific Meeting in Banff.

I moderated our session on trauma and chronic pain, which was led by Mel and included stellar humans Richelle Mychasiuk and Chad Shenk. I kicked things off from my lived experience lens of both trauma and pain. I didn’t share my painful or traumatic experiences (I’ve previously written about why I’ve stopped sharing my story, at least for now). Instead I shared how those traumatic and painful experiences shape how I relate to the research and it’s applications in pain care.

Banff, Canada, May 2023

Why was I so damn mad?

I’ll never forget when I first learned about the links between trauma and pain, through a trusted person on Twitter of all places, and just how angry and resistant I was to such information. It was anger bordering on rage and I felt it in every inch of my body. Thankfully it was a person I trusted and could be vulnerable with, a GP in the UK named Jonathon Tomlinson (as evidence this was a good person to hear hard things from, who I could reach out to to explore why I was so damn angry about it, when I went to his blog to link it here, his most recent post is on Epistemic Justice and Trauma).

Why was I reacting to this information about trauma and pain in such a way? I had read The Body Keeps the Score, I saw myself on many of those pages, I already knew these links, both from reading about it and living it, but still…still I was so damn mad.

I messaged Jonathon about being so mad to explore why that might be so. (Ahhh, the good old days of Twitter, I miss them.) I was in a place where I could get curious about my reaction, a place where I could reflect and breathe and think and share (I’m not always in such a place).

Hackles raised, exploring my reaction

I didn’t want to be victimized. I didn’t want to be stigmatized, again, repeatedly. Pain and trauma are a double whammy of stigma, atop all the other ways we can be stigmatized (gender, weight, queerness, disability, race, education, income, zip code, religion, etc etc etc). I embody that stigma at times.

I heard trauma and pain are linked and my immediate reaction was anger because I immediately felt ashamed. I felt weak. Fragile. Invalidated. Isolated. I was angry at myself for ever letting these things happen to me. I was smarter than that. Stronger than that. I was tough, dammit. A bad ass. Those things don’t happen to strong, smart people.

I. WAS. NO. VICTIM! And, anyway, there’s no way those past traumas affected me or have anything to do with my pain. Or hell, have anything to do with me at all. THAT’S NOT WHO I AM!!!! I’m no weakling. Not fragile. Not less than.

Always ready to fight, this one! But what is it I’m always fighting against? Why are my hackles so readily raised? Why do I always feel like I’m on the defense? Why do I even have the thought in the first place that people who have experienced trauma or live with pain are weak? Are less than? That I desperately don’t want to be one of them? That that can’t possibly be me, too?

Banff, Canada, May 2023

Just a messy human humaning

There’s lots of reasons, of course. I grew up Catholic, so judging people harshly is part of the deal. I grew up blue collar, in metro Detroit. We’ve always had a chip on our shoulder, hence the Detroit vs Everybody mentality and apparel. (We’ve also always been judged negatively too, so there’s that! Also, Go Lions!). We didn’t talk about pain or hardship, we just made the best of it. Showing or expressing pain was weakness.

We didn’t talk about things. If we don’t talk about things, maybe they’ll just go away (we’re not the only ones! It’s not optimal, but usually done with good intentions, to prevent more pain and suffering, so I get it). This was also true for health issues. If we don’t think about it or address it in any way, maybe it’ll just go away.

I was also a firefighter paramedic, and pain was weakness there, too. With some other cultural things that made negatively judging myself and others easy. Such as when we were explicitly taught in paramedic school that fibromyalgia wasn’t real. That it was just women seeking attention. This was in 2008. The 21st century. This was in a classroom taught by a man, with 29 male students and me. How could I question it? I was one of 22 women in my department of nearly 1000 firefighters.

I’ve done a lot of smiling and nodding and laughing and getting along to get along in my day that I regret, but that I also understand. I’m trying to be more compassionate toward that past self.

I digress. Just saying there’s lots of social stuff that contributes to the ways we think, act, hurt, heal.

Back in my home state, for Christmas. Interlochen, Michigan, 2023

No longer angry (at least about some things)

As a matter of statistics, I knew folks in the audience had also experienced trauma and pain, including researchers and clinicians. I shared my initial reactions to the research on early trauma and pain because they might have had similar thoughts, emotions, reactions and I wanted them to know I saw them. That we saw them.

I also shared how, through the support of trusted folks like Mel who was leading this session, I was no longer angry about the research we were about to present ;)

Of course trauma is not who I am. Pain is not who I am. Of course I’m not weak. Of course I didn’t just let things happen to me. And of course that’s not what the research says! Over time I came to know, to live, that I am not just some damaged, dysfunctional, deviant, abnormal, broken mess of a human. I’m just human.

It makes sense that my biology and my body and my behaviors and my thoughts and my self changed in response to trauma. OF COURSE! How could it not? We are always responding and adapting to our environment and the things that happen within it, down to our very cells, just as we act on our environment and the things happening within it.

Over time I became more compassionate with myself, less judgmental of myself, more kind to myself, more understanding of myself. More loving of myself. Which allowed me to be more compassionate, nonjudgmental, kind, understanding, and loving of others. I began to see the research on trauma and pain as offering hope and possibility, rather than determinism and despair.

Perhaps it is not us that needs fixing

In her presentation, Mel talked about the social contributors to and buffers of toxic stress, trauma, and pain. Richelle, a stellar human and incredible scientist who studies neuroplasticity and brain changes after trauma, including concussion and domestic violence, shared basic science research on trauma and pain. Through Mel’s and Richelle’s presentations of I kept thinking, social solutions have to be a part of the way forward. They have to.

So much of pain research is about pathologizing the individual - their tissues, thoughts, behaviors, personalities, movements - and then trying to fix them. But perhaps we aren’t so inadequate. Maybe we are not broken, after all, and are just regular ole humans having normal responses to abnormal situations. Perhaps it is not us that needs fixing, but rather the way we conceptualize these issues, such as trauma and pain, and how to research and treat them, that needs fixing.

The challenges that trauma, pain, disability bring to our identity, our sense of self, our sense of self-worth, our agency, our social roles, our humanity are vast. This may be especially true for adolescents (I was a young teen when I experienced most of my traumas). And the solutions, thus far, are slim. That needs to change.

Let’s start fixing the right things

Daniel Goldberg has written that pain does not cause stigma, we do it to each other. We can stop being dicks to each other, in the words of Richelle during her presentation in Banff. And of course this doesn’t just apply to pain. It applies to disability, or having experienced trauma, or any other stigmatized way of being in the world.

The more we create compassionate, loving, caring systems and environments - that are truly person-centered rather than systems centered - the more we can prevent trauma and pain and also offer relief of pain and suffering in it’s aftermath when it does occur.

Together, we can change unfair and unjust systems, increase access and opportunity, share knowledge, celebrate and express joy, and create pathways to sharing power.

Deepa Iyer, Social Change Now: A guide for Reflection and Connection

We can do these things, but in order to do them we need to move away from the meta-narrative that we are broken, dysfunctional, maladapted, inadequate patients that just need to be fixed and made adequate by health professionals.

Validation

Our session in Banff on trauma and pain was wrapped up by Chad. with a discussion of validation and its role and importance when working with people who have experienced trauma and pain. It’s too big a topic to tackle here - this post is already hella long! - so look for a validation post after the San Diego Pain Summit in early March, where I’ll be co-delivering an interactive workshop on Validation of People Living With Pain in the Clinical Encounter. We’ll explore the hows, whys, whats, and whens.

Validation is something I keep coming back to, over and over and over again. It wouldn’t be so important if people with pain, or people who have experienced trauma (or stigma or racism or sexism or queer phobia or any other form of marginalization or discrimination) weren’t so invalidated all the damn time. Including in the healthcare system, where too often our lived knowledge - even our very humanity - is dismissed, trivialized, discredited. This epistemic injustice needs to be acknowledged and addressed, and epistemic justice has to be a way forward in pain research and care.

This includes validation. Believe people when they tell you what they are experiencing. Just friggin’ believe them. Validate them. Validate their experiences, even if you don’t understand them. Perhaps especially if you don’t! In our paper, led by Fran Toye, on what healing means in the context of chronic pain, which synthesized 195 qualitative research studies, validation of self and validation of pain were found to be important for healing to take place. Validation is also at the center of the paper on communication in musculoskeletal health consultations that I wrote with Tamar Pincus and Hollie Birkinshaw.

Validate people and their experiences!

View from post-SDPS drinks, San Diego, February 2023

San Diego Pain Summit in March!

In addition to the workshop with Mel at SDPS, I’ll also be co-presenting with Cass Macgregor on acceptance. Cass and her PhD team have created an Ecosystem of Accepting Life with Chronic Pain, and with Jackie Walumbe (who will also be presenting tt SDPS!), she has written an open access paper on intersectionality as a theoretical framework for researching health inequities in chronic pain.

I look forward to exploring all of these issues more in San Diego and hope to see some of you there! I will surely be writing about them upon my return as well. After the first San Diego Pain Summit, way back in 2015, I wrote:

I feel like I've been given permission to stop waiting for the pain to go away to be me again; I am free to just be me, right now and always.

The pressure is off. A bit (a lot a bit) of the stress and anxiety and fear of failure at this pain thing has been lifted. It's like I can breathe a bit easier, be a bit easier.

See, prior to this, I had felt like I was doing this pain thing wrong, thereby doing life wrong. So it was incredibly freeing to realize that I wasn't doing it wrong, that I wasn't a failure because I still had pain, that I am doing my best and my best is pretty damn good.’

It’s what really launched this blog, so I’m forever grateful to the community I have found there. You can find SDPS on YouTube, where Rajam offers previous years sessions for FREE!

Thanks for being here.

Hope to see some of you in San Diego. Would love to hear any of your thoughts, questions, ideas, hopes, dreams, frustrations, joys…all the things!…below.