Tegan's Story
Last year I met Tegan, an absolute delight of a human.
She had come to see me after being recommended by her psychologist for a trauma-aware approach to chronic pain. They were keen for me to help Tegan explore her body and develop a plan for mindful movement.
In our first session together, we began co-creating the container in which we would work.
My intention was to develop a space where Tegan could feel safe to be courageous - physically, emotionally, and psychologically.
A space where she could show up whole, with her humanness central. And in doing so, her dignity preserved.
A space where consent, choice, collaboration, clarity, curiosity, and empowerment were the foundations of care.
I asked Tegan what she needed from me, and from the session itself.
She explained her needs:
For me to develop an understanding of how she experienced the world of healthcare.
For us to develop a relationship that was honest, transparent, and open.
For us to develop a plan that was real, manageable and took into account her context.
As she spoke these words, I noticed a warm swell of camaraderie and liberation billow in my solar plexus, inviting me to acknowledge its presence.
Here was someone actively shaping her experience through advocacy, whilst creating space for me to join her.
To work with her. To understand her needs. To learn how I could best show up.
The patriarchal healthcare system, despite all its advantages, does not want to hear about the patient's perspective of both health, and care. We have found ourselves largely neglecting to see the human - and all of their humanness - in favour of diagnosing and fixing.
Expressing poker-hot anger, humiliating disempowerment, hollow loneliness, and murky betrayal, Tegan began sharing her story with me.
She had spent more than half her life in and out of the healthcare system, trying to figure out how to manage her multiple chronic illnesses, within a dominant narrative that perpetuated the mythology of a medical 'cure'.
She was, to use her own words, existing in "middle healthcare".
A place where you are sick, yet not sick enough. Where you go for help, yet are damaged by the process. Where your pain is acknowledged, yet implicitly deemed a defect. Where tightly held beliefs uphold medicine as eventually leading you to the promised land of a diagnosis, and therefore, a cure.
And yet, this is not true. And in the process of it not being true, there is an impact on those seeking help.
Under this assumption, healthcare can be a dehumanizing, minimizing, and damaging experience. One that intuitively encourages people to disconnect from their body, in order to ensure their survival.
I wonder then, is pain itself the most painful? Or is the pain of not being seen in our humanness whilst in pain, more painful?
Not only did it make sense that Tegan arrived fiercely protecting her hurt from yet another health professional, but it also made sense that she was evading her body.
A body that had endured 15 years of uncertainty and fear, and felt no closer to the pot of gold it was chasing. A body that housed a multitude of stories, many jarringly compounded by the very care it had received. A body that was communicating, yet in a language disbelieved by many.
A body that might need some space and time to be the centre of attention, understanding it had been existing, perhaps subconsciously, in survival mode, and that anything else may be perceived as a threat.
A body that needed to be met with kindness and nuance, and to exist amongst uncertainty.
I can hear you asking, but how do we get to the 'movement' part that was requested? How do we do our 'job' when most of what we know is largely focused on the body?
Great question.
One that I have grappled with, having spent many years entrenched in the "traditional" rankism-permeated approach, using my body-based skills to treat, teach, and tell.
Rankism is an assertion of superiority and typically takes the form of putting others down. In doing so, people are subjected to indignity and humiliation.
And yet, it is a world I have been departing for a while now, walking towards an approach rooted in humanity and dignity, where the people I work with house many of their own answers.
Presence, connection, and community are skills now required to temper and nuance my evolving dignitarian approach, one where regardless of our labels, there is dignity for all.
And so, I was honest with Tegan.
I explained the way the systems also influenced our mode of management in the mainstream physiotherapy world, how our view and definitions of body and movement can be reductive, and how facets of heathcare can be shaped by rankism.
This meant that our plan was not going to resemble a generic set of exercises, nor me rushing to use therapeutic touch.
Our first step was about meeting her where she was in relationship to her pain, and her body-mind.
For Tegan, this meant starting our joint exploration where she felt safest and most competent - in her mind.
A place of nourishment for her, where she could choose to go, feeling sheltered from her overwhelmingly painful experiences.
And yet, it was also a place for hope to reside.
Whilst her body was struggling, her mind could engage, which to her, felt valuable. It could also remind her to "be kinder and less fatalistic" to herself and the situation.
Showing genuine compassion towards ourselves is hard. And even harder when our systems perpetuate a narrative that equates pain to brokenness, and places the lion's share of deficiency on the individual.
Communicating with oneself in a way that embodies kindness, clarity, respect, and responsibilty then becomes an act of courage; a step into acknowledging vulnerabilty, and the impact that fear and shame has implicitly had on our bodies.
I then wonder, as health professionals, how we might impact or shape someone's relationship with their body, understanding it is a significant part of delivering care?
As we co-explored Tegan's pain and healthcare experiences, richly colouring her context to inform our path forward, it became apparent my job, in that moment was not to coach a 'movement-is-medicine' storyline.
Instead, I asked questions. And listened intently to her answers.
And not in that motivational interviewing way, where I assume I know where she needs to end up.
Tegan answered my questions by speaking of humanness; of being human and living amidst painful complexity that has no easy 'fix'.
She described the "intellectualizing rabbit hole" she seemingly defaulted to when it felt like her body was failing her. How she always tried to jump 5 steps ahead instead of being present with what was in front of her. How her mind wanted to outrun her body.
She spoke of finding safety within her anger, and how she hadn't yet recognised how that played out in her body. The kind of anger that asserts autonomy and power - the kind that our society doesn't want to listen to, especially in healthcare and particularly by women.
She admitted she viewed her body as an entity outside her control; a vessel whose norm was to inflict pain. She spoke of hating her body for most of her life, existing separately from it. And yet, at the same time, had spent energy and intentionality divesting from the cultural impetus to do just that.
"I think I keep looking for "the" answer of how I can be in my body, where there probably isn't a single one."
As I witnessed Tegan soften into the truth of her experience, and both hold and celebrate her full expression, she learned that she was not alone.
And so, she asked me questions. She needed to not be the only vulnerable one. She needed to see my humanness too.
So I shared of myself, and watched as my answers emerged as stories.
Stories that housed themes, sprouted pathways, challenged the status quo, and placed meaning front and center. Their inherent power was demonstrated through their capacity to nuance complexity, whilst simultaneously nurture both intimacy and perspective.
Around and around we went, our shared exchange ripenening into an instinctive dance, its richness growing and palpable.
Unlearning whilst learning, peeling whilst burgeoning, unfurling whilst weaving.
Through our meaningful, rhythmic conversation, and empathetic attunement, we welcomed and stayed with what was most true for the other.
Investing in this creative, insightful, and generative experience that occurred within the dialogue itself, while also flowing beyond it, deepened our connection, nourishing and transforming us both.
This view of acknowledging medical relationships of mutual giving is not new. Arthur Frank speaks to how valuable the "pedagogy of suffering" is for our post-modern world.
Frank writes, "if people could believe that each of us lacks something that only another can fill - if we could be communicative bodies, then empathy would no longer be spoken of as something one person "has for" another. Instead, empathy is what a person "is with" another".
Frank sees reciprocity, rather than domination, framing the interchanges between health practitioner and patient.
I wonder if we, as practitioners, can see ourselves as hurting humans too?
As then the pedagogy of suffering would mean that someone who suffers has something to teach us and therefore, something to give us. It would mean the intentional creation of space - for relating – and for that to hold meaning, for both humans involved.
For me, I see this as the willingness to be transformed by another in our care. That the giving of self, despite its inevitable perceived greyness, is a crucial part of the story we enter with a patient. Where their story is not material to be scrutinized, but a relationship to be entered.
This brings me back to Tegan, and my role in her care.
I find it interesting, holding the tension of our somewhat intoxicating desire for answers and fairytale endings in healthcare, with the certainty of uncertainty and not knowing, where we, as practitioners, are part of the story.
My intention here is not to devalue the need for interventions, plans, or the championing of movement. They are integral to providing quality care.
However, I wonder if our 'management' overshadows the need to traverse terrain with the people in our care, realizing that within the shared experience itself, lies the pathways and the potential.
Where answers will emerge, yet perhaps from somewhere we do not expect, and potentially from places that we are afraid to explore, given the wholeness of the human experience has been truncated into expert areas of care.
My time spent with Tegan further bolstered this wondering, where I was consistently challenged in my role as a physiotherapist.
My role became one of witnesser, deep listener, noticer, honest answerer, tricky question asker, creative out-of-the-box thinker, learner, sharer, apologizer, quiet contemplator, not knower, reflector, and dignifier.
My role was to be whole and make space for her wholeness. To embody hope through attunement.
I wonder, if we saw every interaction as holding the potential to dignify the human in front of us, what our healthcare world might look like.
Perhaps, by seeing our role as something that requires so much more than technical skills and certainty, we could instead see it as an opportunity to provide care deeply rooted in humanity.
And in doing so, provide an anchor for hope amongst the inevitable complexity and uncertainty that is deeply embedded within the pain experiences of those in our care.
I firmly believe it's time to genuinely invest in this sort of investment.
Where the outcome or 'goal' reaches further, beyond the words detailing sets, reps, function, and "return to", and beyond success as defined by managing, strategies, plans, and coping.
The outcome becomes one of cultivating agency for the person in our care, of helping them develop a self trust and a belief in their chosen pathways, that their way of approaching life‘s choices are informed and make sense for them.
As Tegan so beautifully reflected,
"I can't tell you how refreshing it was to have a healthcare provider who understood the different ways pain is connected to not just the body, but to the experiences and structures that have moulded the physical and emotional perspectives of that person. Because she listens.
The current health care system - despite all of its advantages, fails so many demographics.
Kit gives me hope for a future where these marginalised groups, whether disabled, mentally ill, suffering chronic pain, or all of the above, can get care that actually serves them and treats them with humanity."
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