Recently, I stumbled across an old name badge while tidying up. It was from my first-ever speaking engagement, 10 years ago. Back then, I was a parent fresh off the rollercoaster of a rare TAPS diagnosis. My twins were born prematurely, and the months that followed were filled with uncertainty and fear. At the time, I didn’t see myself as any kind of “expert.” I was a parent trying to make sense of an overwhelming situation that I had been dropped into around 12 months previously.
That badge, though, marked the beginning of something important: my journey as an ervaringsdeskundige. This Dutch term translates to “expert by experience,” and it’s one that holds deep meaning for me. That first talk was a chance to share my story with medical professionals, helping them understand the emotional and practical challenges parents face in the aftermath of a rare disease diagnosis. Little did I know it would spark a passion for advocacy and collaboration that still drives me today.
But here’s the thing about being an ervaringsdeskundige: it’s a concept that’s often misunderstood. Too frequently, people assume we’re little more than hobbyists or “mummy bloggers,” a label that doesn’t even begin to capture the depth of what we do.
Beyond Stereotypes: What It Means to Be an Ervaringsdeskundige
Let’s get one thing straight: being an expert by lived experience is not about chasing likes, clicks, or fame. It’s about turning personal challenges into actionable change. Many of us actively engage with the fields we speak about. We’re not just telling our stories; we’re reading the latest research, connecting with professionals, and even contributing to academic work. Some of us co-author papers or serve as patient advocates in research projects.
What sets an ervaringsdeskundige apart is this blend of lived experience and continuous learning. Our goal is to bridge the gap between professionals and the people their work impacts. We bring insights that can’t be found in textbooks—insights born of sleepless nights, hard decisions, and navigating systems that weren’t always designed with us in mind.
And, unlike the influencer stereotype, most of us aren’t here for personal gain. Our work is driven by passion and a deep desire to make things better for those who come after us. We’re not looking for fame, and we’re certainly not making millions. The reward is knowing that our voices might help improve care, inform research, or simply make someone else’s journey a little easier.
Why Lived Experience Matters
In my case, being an ervaringsdeskundige means advocating for families like mine—parents navigating the complex world of TAPS and other rare diseases. It means helping medical professionals see the human side of the conditions they treat, beyond the charts and statistics. It means ensuring that professionals listen to the questions parents have at 3 a.m. and use those insights to shape the way care is delivered.
The impact of lived experience is profound. Stories from patients can help bridge the gap between clinical expertise and real-world challenges. They remind professionals that behind every diagnosis is a family trying to make sense of it all.
The Path Forward
Reflecting on the last decade, I see how much that first talk shaped my journey. It taught me that there’s power in sharing your story—not just for yourself but for the broader community. It also showed me the responsibility that comes with being an ervaringsdeskundige. Our voices can drive change, but they carry weight.
To my fellow ervaringsdeskundigen: keep going. Your lived experience is a form of expertise, and it matters more than you know. Whether you’re writing, speaking, or simply connecting with others in your community, you’re making a difference. And to the professionals reading this: never underestimate the value of what we bring to the table. We need to create systems and solutions that directly meet the needs of the people they’re meant to serve.
Being an ervaringsdeskundige isn’t about credentials or titles. It’s about turning your experience into expertise and using your experience to make things better for others. That little badge from 10 years ago reminds me how far I’ve come—and how much work there’s still to do.