This National Pain Week (21–27 July), KATHIE ELLIOTT-SCOTT*, who lives with Ehlers-Danlos syndrome, rheumatoid arthritis and other overlapping conditions, shares a personal perspective on how lived experience narratives can support better health care.
Living with chronic pain is rarely a linear journey. For many, including myself, it’s a series of referrals, setbacks, trial-and-error treatments, and moments of either profound connection or complete dismissal by the health system. I live with Ehlers-Danlos syndrome, rheumatoid arthritis and other overlapping conditions, all of which contribute to ongoing and often debilitating pain. But what has stayed with me most is not just the physical discomfort, but the emotional toll of navigating care in a system that too often sees patients like me as problems to be managed, rather than people to be understood.
Before chronic illness became my constant companion, I was a professional dancer and circus performer — someone whose identity was deeply rooted in movement and physical capability. The shift from being admired for my strength and discipline to being doubted or dismissed in clinical settings was jarring. When I began to experience unexplained symptoms, I turned to supplements and complementary therapies in the hope of maintaining some agency over my health. Ironically, this well-intentioned self-advocacy resulted in B6 toxicity — something that was overlooked for far too long, despite escalating neurological symptoms. It was only through the vigilance of a pathology lab, providing additional reporting not originally requested, that it was finally picked up. That moment underscored the dangers of fragmented care and the psychological strain of not being believed.
One of the greatest challenges I’ve faced is the diagnostic delay and the feeling of clinical silencing. Like many women, I was told by multiple professionals that my symptoms were likely stress-related or psychosomatic. I’ve lost count of the number of times I left an appointment feeling unheard or ashamed for advocating too strongly for my body. This erosion of trust, especially in the early years of pain onset, created a psychological weight that compounded my physical symptoms. Healthcare professionals often didn’t see the entire picture — each was looking through their own siloed lens. This fragmentation of care made me feel like a medical mystery rather than a whole human being.
And yet, there have been bright spots. Clinicians who took the time to ask, “What matters most to you right now?” Or those who communicated clearly, acknowledged uncertainty and remained present even when there were no easy answers. One pain specialist validated my entire experience in a single sentence: “You don’t have to prove your pain to me.” That moment unlocked a kind of healing I hadn’t realised I needed.
Continuity of care has also been critical. Having a GP who not only remembers my history but actively coordinates between specialists has lessened the burden of having to retell my story at every turn. Trauma-informed practices — like asking before touching my body, allowing extra time for complex appointments and checking in on my emotional wellbeing — have made me feel safer and more in control of my care.
The system, however, is not always designed to support this kind of person-centred care. Time pressures, lack of multidisciplinary collaboration and inconsistent approaches to chronic pain management mean that patients often fall through the cracks. For those of us with multiple conditions, care plans can become fragmented, contradictory or simply overwhelming. A more collaborative model — where allied health, GPs, specialists and mental health professionals work in concert — would allow for greater continuity, trust-building and ultimately better outcomes.
Storytelling has been one of the most powerful tools in my own healing, and I believe it has a place in the education of healthcare professionals, too. Narrative medicine invites providers to listen beyond symptoms — to understand the context, identity and lived experience of the person in front of them. It fosters empathy not as an abstract ideal, but as a clinical skill that can guide better decisions.
*Kathie Elliott-Scott is a fundraising and partnerships strategist, advocate and consultant with over two decades of experience across the arts, social justice and not-for-profit sectors. She is a contributor to Poised on the Pointe of Pain: Nureyev’s Foot and Other Essays — an anthology for healthcare professionals, educators and policymakers launching during National Pain Week. A joint project between publisher WestWords and Macquarie University, the book features essays from established and emerging authors with lived experience, including Kathie’s story on transitioning from professional dancer to navigating the complex realities of chronic illness. 10% of proceeds support Chronic Pain Australia.
Top image credit: iStock.com/AJ_Watt
