If I moved through the world with pulsing red lines across my body, would that allow others to see the reality of my pain?
The Sunday Essay is made possible thanks to the support of Creative New Zealand.
Original illustrations by Ned Wenlock.
I sit on a grey plastic chair, my sense of time obscured by the blaring fluorescent lights. The emergency department bustles around me in a blur. People cough and splatter, hold bleeding wounds and soothe crying children. I sit, I wait. The seats either side of me filling and emptying. All I want is relief, to lie down, but I shuffle in this hard chair. I sit, I wait. A voice cuts through; it takes me a beat to realise my name has finally been called. Shakily, I follow the doctor into a room.
The clicking of a keyboard. Muffled voices. Heartbeat monitors beeping. Repeating in a rhythm, the volume increases in increments. “We may need to operate, so we’ll have to keep you nil by mouth,” the doctor informs me, his eyes focused on the screen in front. My stomach tightens – I’ve forgotten how hungry I am. I realise how many hours must have passed. I ask about pain relief, telling him a nurse said four hours ago they’d get me something. He flicks his gaze to me briefly “We’ve got a shortage of beds.” I’m just so tired, I want to be at home. I would rather be in the comfort of my own bed if they can’t help me.
He asks me about my pain and I relay my lengthy medical history and the declined referrals. He pushes a pain chart toward me, an outline of a body, and asks me to mark the pain. My heartbeat rings in my ears as I scratch the pen across paper, drawing lines across the legs, arms, ribs, shoulders and along the back of the figure.
He keeps speaking, but it’s drowned out. I cannot make sense of it. Somehow, I am back sitting on the hard grey chair. It is quieter now. Someone is vacuuming. I sit, I wait.
From the womb my body floated, signalled unsafe, my hip detached from the socket even before I entered this world. As an infant, instead of crawling I would bum-shuffle across the floor. I’d sit with my legs splayed into a W shape, grasping at any sense of stability my body could find. I was a playful and imaginative child, throwing myself into various creative pursuits with zest and enthusiasm. But my childhood was also punctuated by constant injuries with no obvious trauma or trigger. I remember sprained ankles, strained wrists, and spending my afternoons perched in front of the TV as I immersed my feet in buckets of ice.
I couldn’t yet understand why group sports or wide games induced a tightening in my stomach, a sense of dread. I desired inclusion, involvement, but my body would signal to tighten, to protect. I always felt different, clumsy, sensitive. So I became an observer, sitting on the periphery.
I became skilled at bandaging my ankles, I accumulated various joint braces, and x-rays became a normal part of life. Hours were spent at physio and chiropractic appointments, diligently doing each new set of rehab exercises after every injury. I made my way around the primary school playground with crutches because my hips were constantly dislocated, and my left foot couldn’t touch the ground. The pain was still distressing, though I came to expect it, prepare for it. Still, no one could connect the dots.
I continued like this, proactively responding and bounding back into the fullness of life after each recovery. But I was unaware of how this pattern was shaping my development and suppressing my emotionality. At 14 I got glandular fever; peers and medical professionals alike made constant jokes about the “kissing disease”. I downplayed how sick I was, not fully resting, pushing myself and unwilling to miss out. A month later I was still sick. Two months later, still sick.
Sick. Sick. Sick.
I was so fatigued I could barely leave the couch. Every time I sat up I was struck by dizziness. It felt as if my body was betraying, turning against me. Sharp pain fired through every bone. Six months of my teenage life, on maximum doses of tramadol and codeine, watching every episode of House and Grey’s Anatomy in a blurred hope of an episode about someone like me. Doctors’ appointments ending in shrugged shoulders and unanswered questions. Blood tests coming back all clear. Referrals declined.
In 2019, in the midst of the chaos of my second year at film school, I was diagnosed with Ehlers-Danlos syndrome, hypermobility type. At 22, mine was considered an early diagnosis. The Ehlers-Danlos syndromes are a collection of connective tissue disorders. EDS is considered a rare condition; hypermobile EDS is not as scarce, but it is still rarely diagnosed. It is exhausting to recount all the times my symptoms have been downplayed because I come across as young and healthy. Connective tissue is all throughout the body, so the symptoms of EDS can seem vast and disconnected, and many of them are not visually obvious.
My pain is visceral, but it is invisible. This leaves room for doubt, for questioning. When the only framework for communicating pain is a clinical 1 to 10 scale, it limits the expression of how EDS impacts me and my quality of life. If I moved through the world with pulsing red lines across my body, threading around my tissue, marking it tangibly, would that allow others to see my reality? For empathy not to fail in the gaps of certainty? Susan Sontag, Elaine Scarry and Virginia Woolf have all written about the way physical pain causes a severing from language and expression – to be cut off and isolated by its invisibility, its unprovability. This sense of doubt hangs over the experience of living with EDS and leads to the burden of self-management. I fall through the cracks of the public health system, of ACC and MSD; I self-fund most of my care.
I spent years seeking answers, trying to understand what was wrong with me. As a young woman going into medical settings, I cultivated a sense of stoicism, a detachment, fearful of being labelled a “hysterical woman”. Expressing my experience only in practical and pragmatic terms, constantly self-advocating but leaving emotions out of it. I am only now unlearning and unravelling this default response, to hold space for the humanness of my experience. When I sat in the specialist’s office, heard my sprawling medical history read out, I finally had all the dots connected. This was real – there was an explanation the whole time. I no longer had to fight to be well, to conform to an able-bodied standard. I was able to retreat from the war against my body.
As I step over the threshold of inhabiting this body, my focus shifts to the external. I now understand I have been taught by our world to think this way. I am forced to reconcile the systems that present the true limitation. I embrace my fragile tissue, my softness, as I navigate new ways of being.
If you would like to know more about the Ehlers-Danlos syndromes visit ehlers-danlos.org.nz. For wellbeing support for EDS or other chronic illnesses, see shiloh.org.nz