To Get Loud or Not to Get Loud? That's the Question.

Life has a way of testing us in ways we never imagined. For me, that test came in the form of a chronic, invisible illness called Ankylosing Spondylitis (AS) a type of inflammatory arthritis that affects the spine and vertebrae and can impact on many other joints and organs. 

My story with AS is one that spans years of confusion, frustration, and unanswered questions. Like so many others living with this disease, I spent a long time searching for answers before finally receiving a diagnosis. I was just 28 when I finally heard the words “You have Ankylosing Spondylitis.” By that point, I had been living with pain, stiffness, and fatigue for years. Doctors dismissed it as stress, overexertion, or even “just getting older.” Deep down, I knew something more was happening, but it often felt like no one was listening. The average diagnosis time for AS in Canada is 7–10 years. That means almost a decade of being left in the dark, doubting yourself, and feeling invisible. For me, those years were some of the hardest — physically and mentally. Now at 35, I still face daily challenges. AS isn’t just about chronic back pain; it’s about the ripple effect it has on every part of your life.

Work: Balancing a demanding career while managing flares can feel like walking a tightrope. Some days, showing up is a victory in itself.

Relationships: It’s hard to explain to others why you cancel plans, why you’re exhausted, or why your body feels decades older than it is. You worry people won’t understand, or worse — that they’ll stop trying, and to this day, I still feel embarrassed and not myself in my own skin with my slight hunched posture due to AS. 

Mental health: The invisible nature of AS makes it isolating. Living with constant pain can be heavy, but so can the emotional weight of feeling misunderstood, not looking/feeling “normal”, and not being like everyone else. 

And yet, despite it all, I’ve made a promise to myself: “this disease will not define me”. 

In 2023, I made a choice — to take something negative in my life and transform it into something powerful. That’s when I created the annual “Let’s Get Loud for AS” Fundraiser Gala” in support of the Canadian Spondyloarthritis Association (CSA).

What started as a personal idea quickly grew into something bigger than me. The Gala became a platform to:

• Raise awareness & vital funds for a disease that affects over half a million Canadians.

• Break down the stigma of an “invisible” illnesses.

• Give others with AS a voice, a sense of belonging, and hope.

For me, it’s not just an event — it’s a movement. Every ticket sold, every conversation sparked, and every dollar raised fuels change. It transforms my pain into purpose, and to date, we have managed to raise $250,000 NET. While AS is part of my life, it doesn’t get to write my story. I still strive to live as normally as I can — whether it’s in my career, my relationships, or simply finding joy in everyday moments.

Some days are harder than others, yes, but I’ve learned that resilience isn’t about never falling — it’s about getting up every single time. Creating the Gala gave me a sense of empowerment, a sense of purpose and belonging. It reminded me that even in the darkest moments, we have the power to choose hope, to take action, and to lift others with us. Today, I’m committed to continuing this journey — not just for myself, but for everyone touched by AS. I want to inspire others to know they’re not alone, to fight for their health, and to never be afraid to share their stories.

AS may have changed the path I thought my life would take, but it also gave me a new mission: “to turn my struggles into a voice for change, and my new life motto and the infamous song that somewhat birth the idea into my fundraiser’s gala name “If you want to live your life, live it all the way and don’t you waste”.