Living and Working: Two Decades with Serious Illness
When I was first diagnosed with breast cancer in my early thirties, I didn’t expect it to be the beginning of a long series of serious health challenges.
When I was first diagnosed with breast cancer in my early thirties, I didn’t expect it to be the beginning of a long series of serious health challenges. Two decades later — breast cancer, heart failure, Parkinson’s disease, a heart transplant — I am still working and advocating within the health sector.
At the time, I had already paused my psychology degree. I was newly separated, raising my son, and caring for my daughter, Kenzie, through her cancer treatment. Compared to what Kenzie faced, my diagnosis felt almost irrelevant. I could still move freely; her cancer had left her temporarily paralysed.
On 29 December 2005, just three weeks after she took her first steps again, Kenzie died. She was three years old.
In the aftermath, I needed structure to get through each day. I returned to university, finished my psychology degree, and completed a postgraduate diploma in communications management and public relations. Studying helped me impose order on the parts of life I could still control.
My personal experiences eventually led me into health advocacy. When Herceptin — one of the first immunotherapy treatments for breast cancer — wasn’t funded in New Zealand, I joined a major campaign for equitable access.
Consumer advocacy already existed, but this was one of the first high-profile movements focused on new-generation cancer treatments.
That work opened doors to training through the San Antonio Patient Advocacy Program in Texas and Breast Cancer Trials in Australia, building a deeper understanding of health economics, systems, clinical research, communication, media, and policy.
Real advocacy isn’t about slogans. It’s about understanding systems — and influencing decisions from within them.
Managing serious illness alongside professional work takes more than planning. It takes flexibility, resilience, and realism.
Remote working isn't a luxury; it’s a necessity. Commuting would be a nightmare — especially when Parkinson’s sends my right leg into full tremor mode. Driving becomes unsafe, and public transport is unreliable. Add in Parkinson’s fatigue and a suppressed immune system post-transplant, and an open-plan office in winter is a health hazard, not a workspace.
Most days, I start early. I take my medications, walk or swim depending on the tide, and I’m usually at my desk by 8 a.m. I work through until midday, rest, and pick up again in the afternoon.
Flexibility isn't optional — it’s essential. Some days, work spills into evenings or weekends, depending on what my body can manage. Productivity doesn't fit neatly into a 9-to-5 framework, and that's fine. It's about getting the work done, not ticking boxes.
Medical appointments are another constant drain — specialist reviews, GP visits, blood tests — each one taking hours out of paid work. The financial costs pile up too: travel, parking, GP fees (where a repeat prescription request turns into a full medications review even though the transplant team already manages this every six months, doubling the fee), and pharmacy bills.
The hidden costs of chronic illness are significant — and cumulative.
Beyond direct medical expenses, serious illness reshapes every part of your working life.
Flexible work isn’t a perk — it’s a survival strategy.
Choosing to work in the charity and health sectors is something I believe in. It matters to me. But it often comes with lower pay, fewer benefits, and limited long-term financial security. (The number of people who think everyone working for charities should do it for free still baffles me.)
Being a single-headed household only sharpens the pressure. The gaps grow over time: slower progress towards a home deposit (I never achieved it), tougher mortgage approvals as a contractor, and a harder road to building retirement savings.
When Kenzie was born, I followed my then-husband to Motutapu Island for his work. There was no real employment for me. I stepped out of the workforce, planning to upskill by studying psychology part-time. Then Kenzie got sick.
As a stay-at-home mum, I took out life insurance — but not private health cover. I was young, fit, 30 years old — and not earning — so income protection didn’t seem necessary.
Choices made with the best of intentions — but ones that would come back to bite me.
I wish I had known more: about compound interest, about how even small, regular savings build over time, about how protecting income and health early is just as important as protecting life itself.
By the time cancer came, private health insurance and income protection were no longer options. Some lessons only become clear when it’s too late.
Financial vulnerability isn’t just bad luck. It’s structural. And it often stays invisible — until you’re already living it.
If I were to apply for a new job today, my medical history might send an HR department running.
But people living with serious health conditions often bring skills many workplaces urgently need, but rarely recognise:
Prioritising the essentials daily.
Navigating unpredictable challenges without losing focus.
Living through complex systems builds solutions-driven thinking.
Experience with illness sharpens empathy and team insight.
Years advocating for healthcare needs hone clear, effective communication.
Setbacks are managed, not dramatised.
Clarity on where energy should — and shouldn’t — go.
These aren’t abstract qualities. They are lived, tested, and essential — especially in today’s uncertain world.
Still Here. Still Working. Still Advocating.
Two decades on, I am still here. Still working. Still advocating.
Not because it’s easy — but because patient voices belong not just in the room, but at the table where decisions are made.
