When I was 21, I made a mistake. I followed my passion. For five years, I danced ballet, but I had started too late to ever cross to a professional level. By the age of 20, I was the oldest one in my class; I needed a new outlet. A friend of mine pitched the idea of taking a pole dancing class together, something wildly out of my comfort zone. I agreed, and four years later, I was performing and competing within my studio. Not once had I ever considered the very thing that gave me freedom would ultimately lead me to the waiting room of an orthopaedic surgeon. By the time I got there—many years later, in January 2025—I had already seen two osteopaths, four physiotherapists, two pelvic floor specialists, a colorectal surgeon, a kinesiologist, two gastroenterologists, a psychotherapist and various psychologists for my waning mental health.
On the monitor where the grey, frayed MRI scan of my hip was displayed, the orthopaedic surgeon pointed to where my femur was supposed to sit in the hip socket, and where it was currently positioned, no more than a hairline difference. This, he said, is known as hip dysplasia.
Using his plastic model of a bone and hip socket, the surgeon explained that hip dysplasia occurs when the rounded head of the femur does not sit securely within the acetabular socket of the pelvis. Instead of a deep, stable cup, the joint is shallow and less structurally stable. What should be a firm foundation becomes a socket that slips, grinds and strains under pressure. Hip dysplasia is most often identified in infancy but it can also emerge in early adolescence, particularly for dancers assigned female at birth.
In a well-formed joint, stability is distributed between bone structure, soft tissue ligaments, tendons and surrounding muscles. But in a socket like mine, as the surgeon explained with his model hip, my deformity became apparent through hypermobility. My body had begun to depend on the soft tissues to maintain coordination and not the surrounding muscles.
For the past four years that I pole danced, I mistook any pinching nerve or joint related pain as my muscles recovering, and my stretchy skin as just an oddity of my body, when in reality, it was masking a problem far more severe.
My hip was travelling beyond a safe range of motion, and as I became increasingly flexible, micro-instabilities accrued, and my body compensated in all the wrong ways. Every time I stood, I felt my eyes float in my skull like a pair of marbles and my head spin in nauseating circles. My breathing was tight and restrained, and some days, my stomach swelled to the size of a watermelon, so much that I could barely walk. I had slowly accrued a seemingly acausal array of symptoms and diagnoses which had finally given way to one singular cause.
“This is no simple surgery,” the surgeon said. “It will happen in two parts. The first is an arthroscopy, which allows me to go into the joint with a camera, repair the labrum and clean up any damage caused by the instability. Then, the second half is the PAO surgery, where we cut and reposition the pelvic bone to deepen the socket and properly support the femoral head. And you will lose at least three litres of blood, and won’t be able to walk properly for at least seven weeks.”
I felt a strange vertigo from finally being believed, even as the cost of that belief was laid out in clinical, irreversible terms.
*
The worst memories of my decline return to my body with sickening corporeality. The earliest memory I can trace is a late afternoon in December 2022, when I was out on a walk. The leaves were dry and crunchy and the heat felt thick as honey. I felt something shift and unravel inside of me like a pulled seam.
When I returned home, I immediately broke down in tears.
I was dizzy, nauseous, bloated and I couldn’t walk straight. My body had given out. All the symptoms that I had dismissed finally ruptured through me. The next day, I saw my general practitioner who decided to run some scans. She then rang three days later, on a Tuesday.
There was ambivalence in the edges of her voice. Very delicately, she told me that my body wasn’t eliminating waste properly and this was disrupting the neurological pathways connecting my organs to my lower legs. She was worried for me, I could tell, but she could help me no further than suggest I increase my fiber and start taking laxatives.
*
My symptoms were nothing but garbled verbiage without any real medical terms. My pelvic floor ached constantly, my intestines felt as though they would rip through my abdominal wall at any given moment, I couldn’t breathe properly, sleep properly or be properly. I felt trapped within the walls of myself.
Every day was calibrated according to what my body would allow. I had to pre-empt my exhaustion based on where I would be during the day, who I was with and what I was doing.
The exhaustion held a perverse kind of momentum. To push through a difficult day was to momentarily negate my body’s failures, to outperform its limits. Fatigue became strangely generative, something to chase, to prove against, until it took on the behaviours of addiction.
I worked two jobs while studying my master’s degree, averaged six hours of sleep a night and continued to dance and regularly go to the gym. I thought that if I did more, I could offset the effects of a failing body. But the harder I tried to disprove chronic fatigue, the more my body’s deterioration demanded to be seen, dragging me into the clinical space where it would, again, be misread.
*
By March 2024, my doctor referred me to see the best pelvic floor physiotherapist in Melbourne to treat my pelvic floor dyssynergia, a fancy name for when the muscles in the pelvic floor fail to relax.
I soon encountered another barrier for treatment during my appointments with her. My physician began to frequently comment on my weight in various oblique iterations; that I was too thin, too sickly. Yes, by appearance, perhaps I was, but my weight loss was unintentional, something that came as a result of physiological dysfunction. She was aware of my past experience with anorexia, and it coloured everything she saw.
The appointments became less about treating my physical symptoms and more fixated on what I was eating, how much I ate and how little I weighed. Once, she asked me point blank if I’d weighed myself recently. “I don’t know, I don’t weigh myself,” I said to her tightly as she leaned against her desk. She nodded and folded her arms as though she’d caught me in a lie. “If you just started eating more protein, then you’d have a bit more on you, and the muscles in your pelvic floor wouldn’t become lax.” Ha! If it was that simple, I wanted to say, but I remained silent; I didn’t know how to respond.
How does one explain that the absence of hunger wasn't born from a compulsive ritual to suppress, but a non-feeling. In hunger's place, I felt a heaviness, a heady weight that distended and tightened the muscles of my stomach which made standing difficult, and eating nearly impossible.After that appointment, I stopped seeing the physiotherapist. I felt that I was only money in her pockets, and that my body was wrong, mechanically flawed and unsaveable.As I continued to drift along the margins of the medical system, I became increasingly lost beneath the surface of myself. At home, I unravelled in episodes of rage and volatility. I became clumsy, dropping things, stumbling into doorframes, knocking over glasses. I was frustrated by my failing body, and frustrated that I couldn’t verbalise the magnitude of the pain while I was experiencing it, because to speak it aloud was to make it real, to make it known.At my worst, I slipped into what felt like an induced psychosis. The chronic instability of my hip made my nervous system hyperreactive. Persistent nociceptive input (pain-related signals sent from the body to the brain) contributed to sustained activation of my hypothalamic–pituitary–adrenal axis (the body’s central stress-response system) and elevated cortisol beyond its adaptive range. Over time, this state disrupted dopaminergic signalling (the brain’s reward and motivation system), particularly in mesolimbic pathways (the circuits that shape how we experience reward and drive), and weakened prefrontal regulation, rather than shutting it down outright.In other words, my brain was unable to filter or regulate the somatic input it was receiving. The intensity of the pain exceeded my capacity to rationalise it, and my responses became distorted under the strain. I became incensed, neurotic, and unrecognisable. I was on a downward spiral, though it was more accurately a system overwhelmed. A body under chronic duress will push the mind beyond its regulatory limits. No one deserved to encounter that version of me, so I withdrew.
*
In early November of 2024, I started seeing an osteopath. As they sank thin needles into the tender seams of my hips, glutes, and neck— muscles that felt like rubber stretched to its breaking point—I recited my backlog of symptoms and therapists I’d seen over the past two years.
Narrating my symptoms had become well-rehearsed lines that I performed out of habit rather than hope. I thought I was an outlier in an undiagnosable grey zone of the medical world. Ironically, the two years of idiosyncratic symptoms I accepted as my body just being itself, the osteopath distilled into one cogent term: dysautonomia. She explained that dysautonomia belonged to the umbrella category of hypermobile Ehlers-Danlos syndrome (hEDS), another term that no specialist or doctor had previously mentioned in my appointments.
The osteopath confirmed the presence of hEDS in my body using a Beighton scale, a nine-point scoring system that assesses hypermobility by testing range of motion for specific muscular joints. The scale, however, is not a standalone diagnostic test; practitioners use it in conjunction with an individual’s medical history, family history or other connective tissue disorders. Finally, I could quantify the level of pain my body had endured for years.
*
Now that I had the vocabulary to decipher my body’s settings, I was better able to encrypt its programming. Through my own research, I came to find that what I was experiencing was not unique at all.
Stephanie Aston, a New Zealand mid-wife with vascular EDS, passed away at the age of 33 after her doctors repeatedly accused her of faking her illness. Since she was 25, Stephanie had exhibited textbook EDS symptoms; joint dislocations, easily bruised skin, migraines that left her bed-bound as well as anemia so severe, she needed multiple blood transfusions. And yet, one of her doctors had “accused her of intentionally draining her blood to alter her blood counts,” as though her failing body were baseless fabrications of an unstable mind. Although Stephanie had protested her doctor’s claims that her illness was “all in her head,” she was involuntarily sectioned in a mental health ward for what her doctor believed was Munchausen syndrome, a factitious disorder imposed on the self.
Stephanie’s case is often framed as an isolated diagnostic failure, but it reflects a deeper epistemic bias in medicine—one that has long positioned women as unreliable narrators of their own bodies. This bias has a history, and it has a name.
The “hysterical woman” functions as a shorthand for female distress that is excessive, performative and fundamentally untrustworthy. It is not a relic of nineteenth-century medicine, but a persistent interpretive framework that endures today. Within this framework, a woman’s loss of bodily control is reinterpreted as a failure of emotional or psychological regulation, and her testimony is subordinated to medical authority. What appears as neutrality in clinical judgment is often shaped by this inherited suspicion, allowing real illness to be dismissed as exaggeration or fabrication.
In this way, what might appear as clinical error is, in fact, a patterned form of negligence rooted in inherited assumptions about women’s credibility—one whose consequences are far worse than a clinician’s misinformed inkling. In Stephanie’s case, this misdiagnosis left a “red flag” on her medical file—one that followed her from doctor to doctor. It “led to a flurry of testing and analysis unrelated to her condition, and influenced other doctors she came into contact with,” but its effects were far more consequential than inefficiency alone. She was placed under psychiatric suspicion, subjected to invasive examinations, and accused of self-harm, while her underlying conditions were left inadequately treated. Eventually, after years of battling both the health system and her body, Stephanie was formally diagnosed with Ehlers-Danlos Syndrome. Recognising that others shared her experience—that their elusive bodily quirks were, in fact, symptoms of a genetic connective tissue disorder—Stephanie co-founded the Ehlers-Danlos Syndromes New Zealand support and advocacy group.
Sadly, on September 1, 2023, Stephanie quietly passed away in her home, but the story of her body did not end with her death. Although her diagnosis had come too late to rewrite her own trajectory, it had illuminated a path for others whose symptoms had long been misread as hysteria. Stephanie’s legacy is an indictment that recognition is rescue and denial can cost us everything.
As I began researching more experiences of Ehlers-Danlos Syndrome, my own no longer felt arbitrary.
In one study, people with hypermobility disorders report strikingly high rates of anxiety, depression and neuropsychiatric symptoms, as if the body’s instability teaches the mind to unravel, too.
In fact, 87.5 percent had experienced anxiety or depression, with similarly elevated reports of PTSD, eating disorders, self-harm, and suicidal thoughts than what is typically seen in the general population. Self-reported symptom measures supported these findings; 43.4 percent screened positive for a probable internalizing disorder, and 20.1 percent met the threshold for possible Borderline Personality Disorder.
This data felt encrypted in myself; I wanted to relinquish the psychotic control I had over my malfunctioning body, but living with hEDS demands a vigilance that borders on obsession. Each day was an audit of symptoms, fatigue burying into my bones like damp, muscles trembling to hold my hips and organs in place, fascia tensing around my neck, ribs and legs like barbed wire. The exhaustion I felt was never just physical, but something that became a cognitive state, so visceral it felt pathological.
*
I wish I could offer you a cathartic end to this story; however, I've only just arrived at the beginning of the next installment. I’m awaiting to have an operation that might very well alter my body permanently, and yet, despite all the fuss, I do not regret choosing to pursue dance. I believe that, in any pursuit of passion, I would have arrived at the same conflict.
While we are not our appearances, we are our bodies, a sack of cells and fluid that bloats, deforms, sags, ages and fails us when we least expect. Only in retrospect can we imagine what we would’ve done differently, but then we might’ve not lived at all. We are our bodies in the vein that we are our histories, ones that are irrevocably shaped by what we have endured.
So, while I cannot offer you an ending, I can offer a continuation: a body in flux, a life mid-sentence.
