About Me

Hi, I’m Colleen — a former investments marketing and communications director from Sydney who now spends more time using spreadsheets to manage symptoms than to manage investment returns.

Before managing my health took over almost all my time, I worked full-time in financial services and spent my spare time renovating our 135-year-old home with my husband. I loved problem-solving, planning, and pushing myself — probably a bit too hard. But life had other ideas. In 2014, I took what I thought would be a temporary break from work to recover from a serious back injury and spend time with my sister, who had been diagnosed with stage 4 metastatic breast cancer. She passed away not long after, leaving behind her husband and five young children.

Since stepping away from work, I’ve undergone more surgeries, scans, and specialist appointments than I can count. I’ve become an unwilling expert in rare diseases, invisible pain, and the medical system’s many blind spots. I live with conditions that affect everything from how my joints move (or don’t), to how my nervous system regulates blood pressure, to how my body reacts to food, medication, and even sunlight.

These days, I live with a long list of complex chronic diagnoses, including Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Syndrome (MCAS), Hereditary Alpha Tryptasemia (HaT), Postural Orthostatic Tachycardia Syndrome (POTS), Migraine with Aura, Temporomandibular Joint Dysfunction (TMJD), Asthma and Severe Allergies, Eosinophilic Esophagitis (EoE), Sphincter of Oddi Dysfunction (SOD) and Irritable Bowel Syndrome (IBS), Complex Regional Pain Syndrome (CRPS) and Chronic Refractory Pain, Peripheral Neuropathy, Raynaud’s Disease, Restless Leg Syndrome (RLS), Tinnitus (including Pulsatile Tinnitus) and Fatigue and Post-Exertional Malaise (PEM). Most of these conditions are lifelong, progressive, and notoriously misunderstood — especially when they overlap in one very tired body.

Through it all, I’ve learned to adapt — sometimes creatively, sometimes resentfully, but always with a bit of humour and grit. My days are often dictated by pain, fatigue, and the unpredictability of chronic illness. But I’m still here. Still writing. Still finding meaning in the mess.

I don’t want to be different. I don’t enjoy hearing, “we’ve never seen that before,” — but I’ve come to accept that some of us do draw the short straw when it comes to rare conditions. If sharing what I’ve learned can make the road a little clearer for someone else, then that’s exactly what I intend to do.

After years of navigating this maze of diagnoses, I decided to document my story — in part to help others, and in part to make sense of it for myself.

This site is about the honest, sometimes messy reality of living with multiple complex conditions. It’s a space for sharing hard-earned knowledge, occasional moments of humour, and the kinds of truths that don’t always fit into a five-minute appointment slot. It’s for anyone who’s ever felt dismissed, overwhelmed, or like their body missed the instruction manual.

And maybe, just maybe, it’s also for me — to reclaim my story, connect with others, and keep finding light in the grit.

Thanks to Tony, Beck, Tina, Maddie and Professors’ Amanda, Toby and Garrick for encouraging me to do this. And to all of the amazing doctors, surgeons and therapists who have kept me going for all these years (especially Dr Kevin, Dr Nina, Dr V, Rosemary and my friend FSPS).

Disclaimer:
I’m not a doctor — just someone with a lot of medical letters on my file and a few too many hospital wristbands. Everything shared on this site comes from my personal experience living with complex chronic conditions. It’s not medical advice, and it shouldn’t replace professional guidance. Always speak to your healthcare team before making any treatment decisions (especially if it involves sparkles, spreadsheets, or ice cream therapy).