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It has a new meaning this year
They say “Live Fearless” like it’s some mantra you can just will into existence. Heck, I even said last year it’s about simply fearing less. Like fear is something you wake up and decide not to have anymore. But fear doesn’t just disappear. Sometimes, it moves into your bones, into your breath, into the spaces you thought were safe.
This year, I’m doing the Live Fearless Challenge with Crohn’s & Colitis Australia, but not actively to raise money. I’m doing it because I need something that’s just for me. Something to help me find the spark I lost somewhere between hospital rooms and sleepless nights.
Over the years, I’ve spoken about living with ulcerative colitis (UC). I’ve had surgeries. I live with an ostomy bag. I’ve quietly carried Primary Sclerosing Cholangitis (PSC) and Rheumatoid Arthritis (RA), and still tried to make it look manageable by putting on a sequin power suit, and a power-colour lipstick.
The Live Fearless Challenge has always been my space to be honest. To speak about scars, blood, inflammation, and fatigue. To make people uncomfortable in speaking my truth. To let others living with invisible illness feel seen.
In previous years, I’ve raised a couple of thousand of dollars for Crohn’s & Colitis Australia, and I’m incredibly grateful for every person who gave, who asked, who cared. But this year is different.
This year, I’m not here to actively fundraise. I’m here to advocate. To speak. To survive, loudly.
Because earlier this year, doctors suspected my son might have inflammatory bowel disease (IBD); and I automatically cried in the emergency room. It shook me, because I know too well what chronic illness demands. What it takes from your body, your spirit, your family. What it means to live in a body that feels like a battleground.
Little did anyone know he would be diagnosed with: Autoimmune Hepatitis, Type 1 Diabetes, Autoimmune Enteropathy, and now IPEX syndrome (or IPEX-like to be technical while we achieve that 3% required in clinical research) that impacts multiple systems and every part of our daily life
People often call me resilient. Like it’s a compliment. Like resilience is a choice you make, a strength you can summon on command. But what they don’t say is the cost behind that word. They don’t see the nights spent broken, the silence forced to keep others calm, the parts of you that are shattered but hidden away.
To be called resilient can feel like a pressure to never show weakness, as if vulnerability is failure. It can be a trigger, reminding you that the world expects you to keep surviving without a pause. But survival isn’t always brave. Sometimes, it’s just exhaustion. Sometimes, it’s the quiet decision to keep breathing when everything inside you wants to give up.
So no, this isn’t about being fearless. It’s not about being strong. This year, the Live Fearless Challenge is personal in a whole new way… It’s about visibility… About saying: chronic illness isn’t always a story of triumph, sometimes, it’s just a story of getting through the day.
It’s about naming what most people ignore, that people can look “fine” and be managing more than you’ll ever know. It’s about starting conversations that matter: Ostomy bags. Feeding tubes. Blood. Grief. Guilt. Uncertainty. It’s about honouring the messy, human, imperfect side of survivorship.
So if you see me doing this challenge again, know this…
I’m not actively fundraising. I’m not trying to inspire. I’m telling the truth… Because this year, that’s what fearless looks like…