When Accolades Fade: Discovering True Worth Through Porphyria
Porphyria Voices shares experiences, insights, and advice from the porphyria community. Discover valuable knowledge, foster connections, and join us in raising awareness to empower and unite our porphyria family.
Written by Mayra Martínez
Curated by Katrina Parra
If you’re living with acute intermittent porphyria (AIP) or any form of porphyria, you already know this isn’t just a medical condition—it’s a life interruption. It’s the kind of illness that doesn’t just affect your body. It redefines your entire world. And for someone like me, who once thrived on performance and public recognition, that shift hit hard.
“This disease may change what you can do, but it does not change who you are.”
-Mayra Martínez, AIP patient.
Before my diagnosis, I was a high-powered executive, always chasing the next achievement. Promotions, awards, praise—I lived for them. They made me feel seen, important, valuable. I measured my self-worth by how much I could do and how many people I could impress.
Then AIP came into my life—and forced everything to stop.
Mayra at the hospital.
The Disease That Stripped Everything Away
The pain from a porphyria attack is like nothing I’ve ever known. Unrelenting abdominal pain, nausea, fatigue, and at times, neurological symptoms that left me confused and afraid. I couldn’t function, much less meet deadlines or maintain my previous pace.
As I faced hospitalization, medication regimens, and a complete overhaul of my daily habits, I also had to confront something much deeper: Who am I without the work, the accolades, the image of success?
It was terrifying. I felt like I was losing not just my health—but my identity.
A Painful, Beautiful Redefinition
Porphyria forced me to sit still, to be present in a body that felt like it had betrayed me. But in that stillness, something began to change. I started to see what I hadn’t been willing to acknowledge before: my value was never in my achievements. It was never in how much I did or how much people admired me.
My worth was in who I am, not what I produce. That realization didn’t come easily. It came through tears, grief, and surrender. But in losing the illusion of control, I gained something far more lasting: peace. I started showing up for my life differently. More gently. More honestly. And I began embracing the spaces that had been quietly waiting for me all along—my family, my faith, my community.
Mayra’s friends in The Miracles Church (San Diego) wearing purple for Global Porphyria Day.
To My Fellow Warriors
If you’re reading this, and porphyria has disrupted your plans, your career, your dreams—please hear me: You are still valuable. Still worthy. Still enough.
This disease may change what you can do, but it does not change who you are.
You are not your symptoms.
You are not your limitations.
You are not less because your body needs rest.
You are strong because you endure.
You are brave because you keep going.
You are worthy because you are.
Mayra and porphyria friends at the Porphyria Palooza 2024.
Redefining What Matters
These days, I find joy in places I once overlooked: slow mornings, meaningful conversations, worship without hurry, and being fully present with my loved ones. The accolades I used to chase don’t mean what they used to—and honestly, that feels like freedom.
If porphyria has taken something from you, know that it may also give you the chance to rebuild on a foundation that’s unshakable—not made of achievements, but of truth.
“You are not here to impress. You are here to live. And that is more than enough.”
For more information on acute intermittent porphyria and managing symptoms, visit Porphyria.org or contact us at info@porphyria.org. We are here to support you in your journey.
After a series of misdiagnoses and a life-threatening experience, Mayra was diagnosed with AIP in 2021. Despite the immense challenges, she chose to fight for her life. Today, she is not only recovering but also enjoys being a Porphyria Advocate with the UPA. She enjoys connecting with others living with porphyria. Her resilience continues to inspire others as she spreads awareness and support.
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