Advocacy in a burnout body

by Dana Diament March 9, 2026

For WellBeing reader Sarah Rosenberg, living with a chronic illness means navigating daily life in survival mode. Yet, alongside the fatigue, flare-ups and constant recalibrating, she carries an equally persistent drive: the desire to create meaningful systems change in the world around her.

Trigger warning: This story contains themes that some viewers may find upsetting.

The third child, the overachiever, the girl with an autoimmune disease and chronic illness – of all the things I am, I never thought I’d be the domestic violence victim. It was a term I’d reserved for vulnerable women. I didn’t think victims looked like me. But abuse doesn’t care if you come from a loving family, if you’re outspoken or if you’re “not the type” to let a man treat you badly. Sometimes it seeps in, through jokes that sting, slammed doors put down to a bad day, compromises you make to keep the peace. Sometimes it’s sudden, a violent act you never saw coming. However, it finds you, naming it feels like swallowing glass. Suddenly, you are the statistic you never imagined becoming.

I was “almost better” when I got raped. After a decade of misdiagnoses and medical dead ends, I was gifted a specialist for my 23rd birthday. My dad called the clinic every day until Dr Richard Schloeffel finally opened his books for me (probably just to get the phone to stop ringing), on the condition I’d join his latest medical trial for myalgic encephalomyelitis (ME/CFS). I wept. It was the best gift I’d ever received.

I wasn’t open at first. I’d been let down too many times, my hopes crushed with every failed treatment and every doubting doctor. “Achieving” a diagnosis had taken years: incurable, under-researched ME/CFS. Cynicism became my armour. But Dr Schloeffel moved quickly, surgically removing two insidious bio-films that had been lurking. Recovery was quick too. The fog cleared, I doubled in weight and ME’s defining symptoms vanished. But it didn’t last long, because something else insidious had taken over.

Violence doesn’t just leave bruises. It detonates in your nervous system. After the assault, my immune system collapsed and depression and PTSD amplified my symptoms. Joints ached, fevers flared and the bone-deep fatigue returned, derailing a body I’d only just begun to trust again after chronic illness. I was back at square one: emergency visits for common colds, brain fog so thick I couldn’t remember what day it was, learning the hard way that seeing a friend and shopping for groceries in one day is, in fact, still too much.

Only this time, having shaken off the over-sleep that once shielded me from the worst of it, I was awake for everything. I was awake and it hurt. I felt every stomach spasm, every jolt of nerve pain, until the skull-splitting pain emanating from my swollen brain felt like my body’s own protest to being conscious. We began searching for a brain tumour.

I used to move so fast – orchestra before school, sport after, then changing into tights in the car as I rushed to ballet. I thought healing meant getting back to that version of myself. But she doesn’t exist anymore. This – this broken body, this faulty nervous system, this pain – is who I am. Healing, I’ve learned, isn’t about going back. It’s about folding pain and resilience into the person I’m still becoming.

When I sought therapy for the rape, what came out first wasn’t the violence. It was the illness. The shame of being doubted linked the two – the disbelief had a history. I understand now that our bodies don’t compartmentalise traumas neatly. It’s all one nervous system.

It wasn’t just the assault. It was what I had to do with it. Because in the aftermath, in the middle of all that physical wreckage, I was navigating a justice system not built for victims, let alone sick ones. So I stepped into advocacy. I launched With You We Can, a first-of-its-kind resource hub for victims navigating the justice system.

For the first time after my abuse, I had purpose – but it came at a cost. The retellings, the disclosures, the relentless fight against apathy, would keep me in a state of hypervigilance for years to come. The work that helped me heal also kept me sick.

Advocacy and Chronic Illness: Equal Parts Grit and Grace

Running a charity while living with chronic illness is equal parts grit and grace. There’s admin no one sees – grant writing, spreadsheets, late-night emails – stacked next to the emotional labour of carrying others’ stories while still healing your own. There’s the vulnerability of sharing your truth publicly, even when it drains energy you don’t have.

And then there are the wins – the law reform we pushed over the line, the message from a victim who says she sought help because of my website. But advocacy isn’t a straight line of triumphs. It’s taking calls on days your body wants nothing but bed. It’s smiling through public appearances while wondering if the lights and noise will trigger a flare.

Dynamic disabilities are easy to gaslight, even by ourselves. On good days, I wonder if I’m just lazy, if I imagined the pain the day before. On bad days, I look for signs of progress: sitting through dinner in pain without flinching, lasting two hours upright in a class. Is that healing, or just a hardened tolerance from chronic illness for suffering?

My sister-in-law once said, “Maybe you don’t need to hope it all goes away. Maybe you just need to hope for more good days than bad.” That stayed with me. It’s a quieter kind of hope, not for a return to how things were, but for peace with how they are.

Finding a way back to normal after trauma isn’t straightforward, because it changes everything. It severs us so completely from what was, so that returning isn’t an option. The work is not to resume, but to acknowledge what cannot be resumed. Letting things hurt is a radical act in a world that teaches us to push through our sadness. But some things cannot be fixed, they can only be carried. Maybe that’s all healing really is – learning to carry what we cannot repair. However long it takes, our hearts carve out new lives in this changed terrain. Little by little, pain and love will find ways to co-exist. But both will always be true.

Chronic Illness Doesn’t Stop the Fight for Change

I’m proof that a body in survival mode can still make change. But only if we stop glorifying burnout and start building sustainable ways of doing this work. Only if we all practise saying, “I don’t have capacity for this right now,” and learn not to apologise for it.

We need systems that believe victims the first time. We need prevention that’s resourced before headlines force our hand. And we need to care for the people doing the work – not praise their sacrifice while they quietly unravel.

Because the truth is, I’m tired. My body is tired. But I still believe in the possibility of something better. Not just for the next victim, but for the person I’m still becoming. Sustainability isn’t a luxury. It’s the only way any of us survive long enough to build the world we deserve.

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