This isn’t just my story, it’s the story of thousands of Australians living in limbo. And during Kidney Action Week and ahead of National Diabetes Week, I’m using my voice for them too.
“You need a kidney and pancreas transplant.”
The words were so matter-of-fact, they almost sounded made up. Like someone telling you your rego’s expired, or you need a new phone battery.
Except this time, the part needing replacement… was part of me.
At 35, I was told I needed two new organs to survive. No dramatic collapse. No flashing lights. Just years of slow, invisible decline finally catching up with me. Years of pushing through infections, appointments, pain, burnout, and fatigue while performing as someone “well enough” to lead marketing teams for Australia’s biggest brands.
I’d just landed my dream job after an overseas executive role. Three weeks later, I was in emergency with chest pain and one of the highest blood pressures the nurse had ever seen. Turns out I’d lost half my kidney function in under a year. And there were warning signs that several doctors had missed but that’s a whole other story.
“You’re in end-stage kidney failure,” the nephrologist said. “You’ll need a dual organ transplant.”
My brain went blank. Then straight into logistics mode: Right, so what’s the treatment plan? How long till I’m back at work? Can we do this after that pitch next week?
But there is no neat timeline when your organs give out. There’s only grief. The kind that sits in your bones. The kind no one talks about because we’re too busy trying to look like we’ve got it all together.
The grief no one sees
When you live with an invisible illness, the world doesn’t always believe you’re unwell—not until you’re hooked up to something, hospitalised, visibly broken or diagnosed with the word ‘cancer’.
I had spent years pushing through. Performing wellness. I wore the right clothes, hit the deadlines, cracked jokes about my glucose device. I didn’t want to be that person – the one who needed too much, took up too much space, asked for too many adjustments. Until I was forced to.
I thought I was winning. I was just hiding. From others, yes. But mostly from myself.
The grief of chronic illness isn’t just about being sick. It’s about the years of being misdiagnosed, dismissed, or doubted. It’s about the six-minute consults for issues that took six years to develop.
It’s about co-workers side-eyeing you for taking another blood test during another ‘important’ meeting. It’s about trying to explain why you can’t do the vacuuming again when your partner’s already done dinner.
It’s about holding guilt in your head and in your inbox -trying to out-perform the stigma.
And for women, it’s even heavier.
The real cost of chronic illness on women at work
Before I got sick, I didn’t realise how many of us were managing entire second lives -the medical one. Now I know:
- 1 in 2 working women live with a chronic illness
- 1 in 3 with a chronic condition have left a job due to inflexibility or burnout
- 1 in 6 women with endometriosis have been dismissed from roles due to their condition
And the average chronically ill woman works full-time hours while managing a part-time job’s worth of medical admin.
My own week includes up to five medical appointments, multiple medications, and hours spent managing side effects, rescheduling tests, or navigating phone queues just to access basic care.
And that’s before you add period pain, asthma attacks, urinary tract infections, or the psychological burden of being perceived as “flaky” for needing to be off work. And that’s why policies on additional paid medical leave won’t help us.
I’ve now mentored and coached hundreds of women with conditions like endometriosis, diabetes, Crohn’s, chronic fatigue, and more. They all say the same thing: they’re exhausted—not just from being sick, but from trying to look like they’re not.
The career I was building vs. the one my body demanded
After my diagnosis, I kept working. I crammed meetings between appointments. I did overtime to prove I was still “valuable.” But eventually, I had to admit the truth: I was breaking.
So, I quit.
I left the glossy job titles and steady paycheque, and started building a business from my couch for people like me -women with chronic illness and disability who still want to make income, impact, and live on their own terms. Unitely, is now a lifeline for women navigating this messy middle between ambition and illness.
Organ transplant is its own beast. Most people don’t realise that in Australia’s opt-in system, only 15 per cent of adults are registered organ donors, and just one per cent of deaths occur in a way that allows donation to proceed. That’s a tiny pool – and for people like me, it can mean years of waiting, hoping, and managing a declining body while still trying to earn an income.
And if you’re one of the “lucky” ones who makes it to transplant? There’s a new kind of grief waiting.
The grief of knowing someone else died so you could live. The guilt of carrying two new organs in your body — knowing someone never got to finish their story so you could continue yours. The strange, beautiful ache of being given a second chance by someone who’ll never get one.
Nobody prepares you for that. Not the surgeons. Not the pamphlets. Not the feel-good survivor stories with neat moral bows.
I was given a rare chance to keep living – something not everyone on the list gets. That truth lit something in me. It pushed me to speak up, find meaning, and build something bigger than myself. I owe it to my future donor to make this life count.
It’s been over a year now. As a woman with a history of one failed pregnancy, I didn’t know that would affect my chances — but it does. The HLA antibodies from that loss now make matching more difficult.
Each month brings a fresh wave of grief: Endless appointments. Miscommunications between three hospitals. Quietly trying to squeeze in IVF to preserve what might be left of my future. Holding your breath after every blood test, bracing for another drop in function. And mourning the version of you who never saw this coming — the one who thought she had more time.
Why this is a workforce issue, not just a health one
Illness isn’t a personal flaw. It’s a structural failure when workplaces can’t adapt.
This isn’t about cupcakes for Endo Week or tampons in the staff bathroom. It’s about a system never built for women with unpredictable bodies. A system that rewards being seen over being effective. One that treats flexibility as a perk, not a right. That punishes rest, glorifies burnout, and only recognises illness when it’s visible and palatable.
And it’s costing us. We’re not just losing individual careers-we’re losing entire swathes of talent, leadership, and innovation from women who could thrive if the system didn’t force them to choose between their income and their health.
So what now?
We speak up. We redesign. We demand better.
We stop treating health as a private issue and start recognising it as a shared responsibility. Because without health, there is no wealth-for anyone.
Here’s what we need — not perks, but policy:
- Slow productivity – prioritising outcomes over hours. Valuing consistency, not capacity. Recognising that rest isn’t laziness – it’s strategy.
- Psychosocial safety – creating cultures where people can speak openly about illness without fear of judgement, gossip, or career punishment. Where managers are trained, not just tolerant.
- Genuine flexibility – not just a WFH policy buried in a handbook, but real autonomy: remote roles, buffer time, job-sharing, part-time leadership, compressed weeks.
We’re not asking for favours. We’re building a future where work finally works, for all of us.
Because we’re not just losing individual careers to chronic illness — we’re losing entire swathes of talent, creativity, and contribution from women who could thrive if the system didn’t constantly make them choose between their health and their income.
Because we deserve more than survival
If you’re reading this and feel like you’re barely holding it together: I see you.
You’re not weak. You’re navigating a system that was never designed for people like us. But we are here. In every workplace. In every boardroom. On every transplant waitlist. And we’re done hiding.
Our illnesses may be somewhat invisible, but we aren’t.
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