Reclaiming My Voice: Reflections on Empowerment and Resilience at CAMH

This April, I was honoured to speak on a powerful panel hosted by CAMH titled "Building Resilience: Empowering Families and Patients in the Recovery Process" as part of CAMH Patient and Family Experience Week. This annual event at CAMH is dedicated to elevating the voices of patients and families, creating space for dialogue, and recognizing the important role that lived experience plays in transforming healthcare.

As someone who has spent years navigating a complex web of chronic illness, rare disease, and mental health challenges, the theme of empowerment deeply resonates with me. But here’s the truth: I didn’t always feel empowered. In fact, for most of my journey, I felt anything but.

What Empowerment Means to Me

Empowerment, for me, began with first finding my voice. It wasn’t until I began speaking openly about my health journey that I began to feel any real sense of power or agency. For so long, I felt silenced—by the system, by my own self-doubt, and by the fear of being dismissed or misunderstood.

As Brené Brown says, "Owning our story and loving ourselves through that process is the bravest thing that we’ll ever do."

That bravery was my entry point into empowerment. To be empowered is to be seen, heard, and believed. It’s more than just having a seat at the table—it’s knowing that your presence at that table matters. It’s having your lived experience valued and your voice respected. Empowerment is also deeply rooted in connection—with yourself, with your community, and with a larger purpose.

When I began to share my story publicly, I saw how it could help others—not only other patients but also clinicians who were eager to learn. That purpose helped me transform pain into purpose, and invisibility into impact.

Empowerment is the foundation of resilience. You can’t truly begin to recover, or sustain recovery, without some sense of personal power. For me, it meant realizing that I could participate in shaping my path forward, rather than feeling like everything was just happening to me.

And just like recovery, empowerment isn’t linear. It came in waves—through storytelling, advocacy, learning to rest, and giving myself the grace I so readily give to others.

Influencing Health Care Supports

My journey has shifted from simply surviving the system to becoming an active participant in shaping it. I now sit on advisory committees, contribute to inclusive communication guidelines, and advocate for trauma-informed care and awareness of rare and complex conditions.

Through my work, I’ve helped shift conversations from "What’s wrong with you?" to "What happened to you?" This trauma-informed lens is critical to both physical and mental health recovery. By sharing my lived experience, I help humanize the patient's perspective and reframe what true support can look like.

Resilience didn’t mean I bounced back—it meant I adapted, evolved, and showed up in spaces that once made me feel powerless. That resilience has fueled my ability to push for change—not just for myself, but for others walking similar paths.

What Clinicians Have Learned From Me

One moment that stands out was my presentation to a new cohort of students at the University of Toronto's Temerty Faculty of Medicine. I shared how I had spent much of my life being dismissed as a hypochondriac—even though I was a high achiever who didn’t want to be sick. Even at my lowest, I was often met with skepticism.

After sharing my story, one of the doctors asked, “What should we look for in practice?” I told them to look for patients you might be tempted to label hypochondriacs—whose symptoms wax and wane. They may appear fine one day and completely unwell the next, yet at the same time, they show no desire to be sick.

That session wasn’t about teaching them the specifics of my rare condition—it was about radical listening. Most people don’t want to be sick. They’re trying to communicate something, and what they need is to be heard, not labeled.

The Role of Self-Care in Empowerment

To close the panel, we touched on the link between self-care, independence, and empowerment. For me, self-care isn’t just bubble baths and journaling (although I love those too—like a lot). It’s about building sustainable systems that reflect my values. It’s about asking for help when I need it, creating boundaries that protect my energy, and honouring my body’s needs without shame.

Resilience isn’t about toughing it out—it’s about softening into safety. Empowerment may be the spark, but it’s community and care that keep it lit.

I’m grateful to CAMH for creating space for patient voices like mine. Events like these remind us that healing is not a solo journey—it’s something we build together. Whether you’re a patient, family member, clinician, or ally, we each have a role to play in building a more compassionate, inclusive healthcare system.

Let’s keep the conversation going. What does empowerment mean to you?