Patient leadership is a journey—one that twists and turns with the seasons of our lives.
There are moments when we can give 110%, showing up in full force, sharing our stories, and advocating fiercely. And then there are times when life asks us to step back—whether for our own health, personal growth, or the needs of those we love.
But stepping back doesn’t mean stepping away.
If there’s one thing I’ve learned in my own advocacy journey, it’s that our impact isn’t defined by how loudly we speak or how present we are at all times. Our impact is in how we evolve, empower others, and allow our stories to shift as we do.
My Patient Leadership Journey
In 2012, I stepped into patient leadership out of necessity. My focus was on psoriatic arthritis, avascular necrosis, and complex regional pain syndrome—conditions that profoundly shaped my life.
I searched for answers, connection, and hope, and I found them in the stories of others. The patient community became my source of strength, and I, in turn, became passionate about sharing my own experiences to help others.
But as time passed, I felt the pull to go beyond my personal experience. I wanted to uplift all patient leaders—across condition areas, across communities—because I realized something crucial: no single voice should carry the weight of a movement. True impact comes when we create space for others to lead alongside us. And that’s when I realized my true calling was to advocate for other advocates.
Over the last 10 years, I’ve focused on just that through WEGO Health and Health Union (and any other avenue I was able to insert myself into).
Launching platforms, certification programs, and beyond—the teams I’ve worked with are incredible. The patient leader voices I’ve been able to connect with industry and raise are thousands. And it’s been such a fun, fantastic career so far.
Then, in the last year, my journey shifted again.
I entered a season of family, welcoming four incredible children into my life. One of them spent the first six months of her life in the hospital, and during that time, my entire world changed. I became a caregiver, advocating not just for myself but also for my child.
I faced a new challenge—how to share our story in a meaningful way while respecting her voice and her journey.
The Ebb and Flow of Advocacy
These experiences taught me that advocacy isn’t about constantly being at the forefront.
(Let me say that for the people in the back) – Advocacy isn’t about constantly being at the forefront.
It’s about knowing when to lead and when to lift others up.
It’s about embracing the natural ebb and flow of patient leadership.
It’s understanding that stepping back doesn’t mean losing your voice—it means evolving how you use it.
And that’s where community becomes so powerful.
In my work with the Social Health Network, I’ve seen countless patient leaders navigate these shifts resiliently. I’ve spoken to patient leaders who have had to step away for their health, for their families, or simply because they needed a break—but they remained connected. They found ways to support others, to pass the mic, and to make space for new voices.
How We Can Lead Through Every Season
So, how can we continue to grow and evolve as patient leaders, even when our roles and seasons shift?
Here are three key lessons I’ve learned:
1 – Embrace the Evolution of Your Story.
Your advocacy doesn’t have to look the same today as it did five years ago—or even last year. Life changes, and so does your focus. Allow yourself the grace to shift, knowing that every season of your journey has value.
2 – The Power of Community and Collective Leadership.
No one carries this work alone. Patient leadership is a relay, not a solo race. Build relationships, support others, and empower fellow advocates to step up when you need to step back. Our voices are stronger together.
3 – Your Story Is Your Power—Keep Sharing It.
Whether you’re in a season of leading from the front or a season of quiet growth, your story still matters. Share it in a way that feels authentic to you—whether that’s speaking out, mentoring others, or simply being a presence in the community. Every contribution counts.
Your Next Chapter Starts Now
If you’ve ever felt guilty for needing to step back or uncertain about how your role as a patient leader should evolve, I want you to know this: Your impact is not measured by how visible you are. It’s measured by the lives you touch, the voices you amplify, and the legacy you create.
So, as you move forward, ask yourself—what season am I in right now?
How is my story evolving?
And most importantly, how can I continue to make an impact in a way that aligns with where I am today?
The beauty of patient leadership is that it doesn’t belong to one person—it belongs to all of us. Together, we will continue to rise, evolve, and make a difference.
Let’s keep leading in every season.
Wishing You A Pain Free Day!
