From Secrecy To Advocacy – My Journey To Finding Purpose In The Face Of Adversity
From the day I was born I found myself with constant doctor visits, hospital appointments and a whole lot of confusion. I was put on every diet you could think of, from gluten, to lactose free, yet none showed progress.
I faced problems as I entered school, my peers questioning why I was constantly running to the toilet, why I didn’t like school swimming lessons, or not knowing where the toilet was. My symptoms could stabilize on a fructose free diet, although this fluctuated.
Years and years passed and no doctor could figure out what was wrong, so up came my teenage years. 2022, 16 years old, I had moved to a brand new high school, confidence booming through the roof.
Until a shock event where I was hit by a car. Although not badly injured, it triggered what became my worst flare up, and my eventual diagnosis.
I began rapidly losing weight, I was 40kg at 16. My knees began to fail on me, and my ankles swelled up, the school bell would ring and I’d find myself struggling to stand up from my seat, my knees would lock. I developed severe fatigue, mouth sores, stomach pain, nausea, diarrhoea and a loss of appetite. My boundless energy disappeared, and even getting through a day of school or work became a struggle. I remember wanting to fall to the floor and just lay.
I was admitted to hospital, where after an MRI, colonoscopy and endoscopy. I was finally diagnosed with Crohn’s disease. I was placed on the medication AZATHIOPRINE, where I remained in remission for 2 years to come, followed by an iron infusion.
Upon returning back at school, I soon found I had been away for 50% of the school year, just about 6 months. I was in the hospital during school camp. Not only was I far behind, I had to navigate my new diagnosis. For the first 8 weeks of being back at school I was on a liquid only diet, my 16 year old self couldn’t have been more embarrassed. So I continued to keep the truth a secret, telling only a couple friends. How was the new kid meant to fit in when he was barely even there?
With hard work i began teaching myself about my disease, its triggers, and understanding the rule of “not one size fits all” I learnt that anxiety and stress could send me into a flare very quickly, so i worked towards building my confidence, i learnt that particular foods dont absorb in my gut as efficiently as others, so i changed my diet. And was able to rebuild my weight back to 60kg. CCA’s resources were supplied to me by my father, until I became a member myself further down the line when I became an adult.
Despite all this, i still lacked the confidence i had when i first arrived to my new school, i felt grief for how i once was. I knew i could no longer join the military, what once was my original plan. I ended my high-school career in 2024 with my graduation, where due to multiple flare ups i fell behind in my final atar score.
1 year ago, I remember telling someone. “I’d never tell another person about my Crohn’s disease, only if I had to”
Now, 2026. I spent this May raising money, advocacy and awareness around the disease. I walked 5km every day, and did my final 5km at the Launceston running festival in Tassie, repping a purple sash to show off what I was fighting for, I raised over $1,100. I uploaded videos on TikTok, with one collecting over 12,000 views.
I always believed I would be ridiculed, judged, someone who has a bowel disease? Like I was gross. Truth is by sharing, fundraising, I had never received so much support, love and people believing in both me, and inspiring themselves.
What changed? I decided, instead of letting this disease be no more than that of a burden to my life, I could instead use it to help others, to give it purpose and turn what once was my biggest insecurity, into hope for others.
Despite me not being currently in remission, with a new medication starting in a matter of weeks, I know I can trust in my gastroenterologists, my support team, and myself.
I now know that invisible illness does not mean invisible people. By sharing my story, I hope others living with Crohn’s disease or ulcerative colitis know they are not alone—and that their condition does not define what they can achieve. The support I’ve received through sharing my journey has fuelled me to continue advocating, raising awareness, and helping others feel seen.
Show your disease who’s really in control.
If you or someone you love is a teen or young adult living with IBD follow this link to access our supportive resources: https://crohnsandcolitis.org.au/about-crohns-colitis/young-people-with-crohns-and-colitis/