“You deserve a medical team that listens and investigates” – Elle’s story
In October 2023, I had my first colonoscopy. I’d been experiencing troubling symptoms for some time, but I had no idea what to expect. My specialist entered with a notepad and, very hurriedly, told me I had a form of ulcerative colitis (UC). I’d just moved to a new city with my then-partner, ready to embrace a new chapter in my life. But in that moment, everything felt overwhelming and I started to cry. My specialist suddenly got uncomfortable, muttered “sorry” and quickly moved on to the next patient. Whilst I didn’t really understand it at the time, it was my first glimpse into how easily chronic illness can be underestimated.
In the following months after diagnosis, medications would be prescribed, only to lose effectiveness within weeks. Instead of exploring alternatives, my doses were increased. When I told them about my pain, it was sometimes dismissed as diet-related. It lead to hydrogen breath tests that cost hundreds of dollars. Just before I stopped seeing this specialist, I landed in hospital. I was so excited as the team there were lovely, and after they put me on steroids I felt loads better. But this only offered temporary relief, and the long public waitlist and inconsistent follow-up care inevitably left me feeling worse again.
After a year and a half, my world became smaller. Pain, fatigue, and frequent trips to the bathroom kept me confined to my apartment. I withdrew from work, hobbies, and friendships. Even joyful moments, like a planned holiday, were overshadowed by symptoms and the mental toll the steroids were taking. I had found another private specialist, but after trialing a few new medications, things still didn’t improve.
By this point I’d reached the two year mark from when I first experienced symptoms. But everything changed when I returned to my hometown and found a doctor who acted immediately. After further testing and a refined diagnosis, I began treatment with a biologic. I was able to taper off steroids, regain strength, and finally start to reclaim my life.
This experience inspired me and my little brother Dan to launch Flarewear, a comfort clothing brand for people living with not just IBD, but other ongoing health conditions. Our mission is to bring comfort and a sense of belonging to people dealing with a variety of symptoms. It’s what you wear… when you’re going through a flare!
I am so excited to have a sense of purpose again. While life is not completely the same as it was before diagnosis, it’s a new normal I can count on. I’m stronger, supported, and finally in control. If you’re in pain, there is a reason for it! You deserve a medical team that listens and investigates. If you are experiencing flare-ups, please be gentle with yourself. You are so much more than your diagnosis!