Living with a chronic illness can feel like existing in a constant state of survival. For many, this reality is punctuated by debilitating fatigue, unpredictable flare-ups, and the relentless need to recalibrate their lives. Yet, amidst these profound challenges, an equally persistent drive often emerges: the desire to foster meaningful systems change in the world. This is the story of one such individual, whose journey through personal trauma and chronic illness has ignited a powerful commitment to advocacy.
When Trauma Strikes Unexpectedly
The label of “domestic violence victim” was never something I associated with myself. I envisioned vulnerability, a perceived weakness that I didn’t see in my own reflection. I was the overachiever, the one who had always managed to overcome obstacles, even with the added burden of a chronic autoimmune disease. I never thought I’d be the person statistics referred to. But abuse, I’ve learned, is indiscriminate. It doesn’t discriminate based on family background, assertiveness, or perceived resilience. It can seep in subtly, disguised as everyday friction – stinging jokes, slammed doors attributed to a bad day, or compromises made solely to maintain an illusion of peace. Or, it can strike with the brutal suddenness of an act of violence you never saw coming. Regardless of how it manifests, naming it feels like a physical act of swallowing glass, transforming you into the very statistic you never believed you’d become.
A Glimmer of Hope, Followed by Darkness
Just as I was beginning to feel a sense of recovery after a decade of misdiagnoses and dead ends, a devastating assault occurred. It was a cruel twist of fate, happening precisely when I had finally received a specialist’s attention for my 23rd birthday. Dr. Richard Schloeffel, a specialist in myalgic encephalomyelitis (ME/CFS), had agreed to take me on as a patient, albeit after persistent daily calls from my father. The condition was that I participate in his latest medical trial. This felt like the most profound gift I had ever received.
Initially, I was guarded. Years of dashed hopes, failed treatments, and dismissive doctors had left me cynical. Achieving a diagnosis for the incurable and under-researched ME/CFS had been a monumental task, and cynicism had become my shield. However, Dr. Schloeffel’s approach was swift and precise. He surgically removed two insidious bio-films that had been plaguing my system. The recovery was remarkably rapid. The pervasive brain fog lifted, my weight increased significantly, and the hallmark symptoms of ME vanished. But this reprieve was short-lived, as something else, equally insidious, had taken root.
The Lingering Impact of Trauma
Violence leaves scars far deeper than physical bruises; it can detonate within your nervous system. Following the assault, my immune system collapsed. Depression and PTSD exacerbated my existing ME/CFS symptoms. My joints ached, fevers returned, and the bone-deep fatigue re-emerged, dismantling the fragile sense of trust I had just begun to rebuild in my body. I was back at square one, facing emergency visits for common colds, brain fog so thick I struggled to recall the day of the week, and the harsh reality that even simple social interactions or grocery shopping were now insurmountable tasks.
This time, however, there was no deep sleep to shield me from the full impact. I was awake to every sensation, and it hurt. Each stomach spasm, each jolt of nerve pain, felt amplified. The skull-splitting pain emanating from my swollen brain felt like my body’s desperate protest against consciousness. Medical professionals began to search for a brain tumour.
Redefining Healing: Beyond the “Normal”
I used to be a whirlwind of activity – orchestra before school, sports afterwards, changing into ballet tights in the car on the way to lessons. I initially believed that healing meant returning to that version of myself. But that person no longer exists. This broken body, this compromised nervous system, this persistent pain – this is who I am now. Healing, I’ve come to understand, is not about reclaiming the past. It’s about integrating the pain and the resilience into the person I am still becoming.
When I sought therapy for the rape, the illness emerged before the violence itself. The shame of being disbelieved, a feeling I had experienced extensively with my chronic illness, became a connecting thread. I now understand that our bodies do not compartmentalise trauma neatly; it is all experienced through a single, interconnected nervous system.
From Victim to Advocate: A New Purpose
The assault was not the end of my ordeal; the subsequent navigation of the justice system presented its own formidable challenges. In the aftermath of the physical and emotional wreckage, I found myself confronting a system that seemed ill-equipped to support victims, let alone those with chronic illnesses. This experience propelled me into advocacy. I launched “With You We Can,” a pioneering resource hub designed to guide victims through the complexities of the justice system.
For the first time since the abuse, I found a sense of purpose. However, this purpose came at a significant cost. The repeated recounting of my experiences, the disclosures, and the relentless fight against apathy plunged me into a state of hypervigilance that persisted for years. The very work that aided my healing also contributed to my ongoing illness.
Advocacy and Chronic Illness: A Delicate Balance
Running a charity while living with a chronic illness is a testament to both grit and grace. It involves the unseen administrative burdens – grant writing, meticulously managing spreadsheets, and responding to late-night emails – all layered upon the immense emotional labour of holding the stories of others while still tending to one’s own healing. It requires the vulnerability of sharing personal truths publicly, even when it depletes precious energy reserves.
Yet, there are profound rewards. Witnessing a law reform we championed come to fruition, or receiving a message from a victim who sought help because of my website, offers immense satisfaction. However, advocacy is rarely a linear path of triumphs. It means taking calls on days when your body craves nothing but rest. It means putting on a brave face for public appearances while silently battling the overwhelming sensory input of lights and noise that could trigger a debilitating flare-up.
Navigating the Ambiguities of Dynamic Disabilities
Dynamic disabilities are particularly susceptible to gaslighting, often from ourselves. On good days, self-doubt creeps in, questioning if I’m simply being lazy or if the pain experienced the day before was imagined. On bad days, I search for signs of progress: enduring dinner without flinching despite pain, or managing to stay upright for two hours in a class. Is this genuine healing, or merely a hardened tolerance for suffering cultivated by chronic illness?
My sister-in-law once offered a perspective that deeply resonated: “Maybe you don’t need to hope it all goes away. Maybe you just need to hope for more good days than bad.” This sentiment offers a quieter, more grounded form of hope – not for a return to a past state, but for a peaceful coexistence with the present reality.
Embracing a New Terrain of Existence
Finding a path back to “normal” after trauma is an illusion, as trauma fundamentally alters everything. It severs us so completely from our past that a simple return is impossible. The true work lies not in resuming, but in acknowledging what cannot be resumed. Allowing ourselves to feel the hurt is a radical act in a world that encourages us to suppress sadness. Some things, however, cannot be fixed; they can only be carried. Perhaps this is the essence of healing – learning to bear the weight of what we cannot repair. Over time, our hearts find ways to carve out new lives within this transformed landscape. Gradually, pain and love will learn to coexist, both holding undeniable truth.
Sustaining the Fight for Change
I stand as living proof that a body operating in survival mode can still be a catalyst for change. However, this is only possible if we dismantle the glorification of burnout and instead cultivate sustainable approaches to this vital work. It requires us to embrace the power of saying, “I don’t have the capacity for this right now,” without apology.
We urgently need systems that unequivocally believe victims from the outset. Prevention efforts must be adequately resourced before crises force our hand. And crucially, we must care for those engaged in this demanding work – not by praising their sacrifice while they quietly unravel, but by providing genuine support.
The truth is, I am tired. My body is exhausted. Yet, my belief in the possibility of a better future remains unwavering. This hope extends not only to the next victim who will seek solace but also to the evolving person I continue to become. Sustainability is not a luxury; it is the fundamental requirement for any of us to endure long enough to build the world we truly deserve.
If you or someone you know needs support, help is available 24/7:
- Triple Zero (000) — Dial 000 directly for emergencies.
- 1800RESPECT — www.1800respect.org.au | Call 1800 737 732 | Text 0458 737 732. This is Australia’s national sexual assault, domestic and family violence counselling service.
- Lifeline — www.lifeline.org.au | Call 13 11 14. For crisis support and suicide prevention.
- Kids Helpline — www.kidshelpline.com.au | Call 1800 55 1800. For young people aged 5 to 25.
- Men’s Referral Service — www.ntv.org.au/mrs | Call 1300 766 491. For men seeking to change their violent behaviour.
