Read time 5 minutes
Sometimes the things we can’t change end up changing us.
I sit here today with a heart full of gratitude for the strength to write this, for the breath that flows freely, and for the resilience that carried me through the chaos. Life threw curveballs I never saw coming, and yet, here I am. Stronger. Softer. Wiser.
The story I’m about to share isn’t just mine. It’s for anyone whose idea of success has ever been shaken, stretched, or entirely rewritten.
It’s for you if you’ve had to learn, in the rawest ways, that sometimes healing is itself a triumph.
Chapter 1: The Moment Everything Shifted
Back in 2016, the rhythm of my life changed in ways I couldn’t imagine. What began as a routine check-up turned into a doorway into a world I’d never known. A rare diagnosis of Isaacs’ Syndrome . It is a neuromuscular disorder characterized by continuous muscle fiber activity. All of this suddenly became my reality.
But the surprises didn’t stop there.
Lyme disease, Glaucoma, Membranous Glomerulonephritis, Irritable Bowel Syndrome (IBS), Diabetes, Frozen Shoulder, Blood Pressure issues & Eczema; each condition layered itself over the other. It created a complex tapestry of symptoms and struggles. My body felt like foreign territory, unfamiliar and unpredictable.
I remember the sterile scent of the hospital hallway, the chill of the wheelchair handle beneath my fingers, and the silence that followed my diagnosis. It wasn’t just a physical shift; it was emotional, spiritual, existential. My sense of self fragmented under the weight of the unknown.
Chapter 2: From Corporate to Curative
Before all this, success wore a very different face. I was entrenched in a fast-paced career, striving for the typical markers, promotions, financial stability, and recognition. Weekends were business brunches. My calendar overflowed with meetings, and my sense of worth was bound to accomplishments.
But illness has a curious way of introducing clarity.
Suddenly, small tasks became monumental. Even sitting upright without assistance, making it through the day without fatigue, and waking up without pain.
Health became my new goal.
And every modest improvement became a celebration. I realized that my former version of success had little room for rest, empathy, or self-compassion. This diagnosis stripped away the glitter and exposed me to my truth. And for that, oddly enough, I’m grateful.
Chapter 3: Redefining Success on My Terms
So, what does success look like when our body isn’t cooperating? When does our future feel more unpredictable than secure?
For me, it meant creating a new framework, one rooted in healing, hope, and humility. Here are seven ways this diagnosis reshaped my philosophy:
1. Acceptance
The foundation of all transformation. I learned that denial delays healing. Accepting my diagnosis wasn’t surrender; it was the first step toward empowerment. I had to meet myself where I was before I could move forward.
2. Deep Reflection
What matters most when you’re forced to slow down? For me, it was nature, journaling, quiet walks, and the comfort of loved ones. I discovered the beauty of simplicity. These small joys became anchors in the storm.
3. Setting New Goals
No longer focused on promotions or targets, I began crafting health-centric goals. Drinking enough water, getting proper sleep, and managing medication side effects; each goal realigned me with my new priorities. Every step felt like progress, every milestone a moment of pride.
4. Prioritizing Self-Care
In a society that romanticizes hustle, choosing rest is revolutionary. I realized that self-care isn’t indulgence; it’s survival. Morning meditation, mindful eating, and movement that nurtures (not strains) the body became integral to my routine.
5. Creating a Support System
I surrounded myself with people who understood, supported, and uplifted me. Family, friends, caregivers, and an online community of fellow patients. Connection fortified my resilience. I wasn’t alone, and that changed everything.
6. Celebrating Small Wins
Getting out of bed. Showing up to a doctor’s appointment. Laughing. Crying. Writing this blog. All wins. All valid. Recognizing them helped reframe my narrative from struggle to strength.
7. Finding Purpose in Advocacy
Perhaps the most unexpected yet rewarding outcome was my advocacy journey. I founded ordinarilyrare.com, a space that amplifies voices in the rare disease community. What was once my silent struggle became a speaker for others navigating similar paths.
That is success: shared, compassionate, transformative.
Chapter 4: From Pain to Purpose
Initially, the pace at which my body deteriorated terrified me. I felt robbed of control. But somewhere between the panic and the pain, something extraordinary happened.
I found peace.
I began embracing moments rather than milestones. I allowed myself grace, choosing not to compare my journey to anyone else’s. And gradually, my identity evolved, not as a victim of circumstance, but as a victor of choice. Every conscious decision to care for myself became a triumph.
The illnesses still exist. Some days are harder than others. But I live with intention now. I celebrate my body for all it endures. I honor my journey, scars and all.
Chapter 5: Success as a Living Philosophy
We often associate success with external validation. Our salary brackets, accolades, and applause decide it.
But here’s what chronic illness taught me: true success is internal.
It’s peace of mind. It’s laughing despite the odds. It’s finding meaning in pain, light in darkness, and strength in vulnerability.
So, what’s your definition of success? Is it the size of your bank account, the car in your garage, or the number of followers on your feed?
Or is it—
- The ability to breathe deeply
- To sleep through the night without discomfort
- To express love
- To forgive yourself
- To grow spiritually
- To feel fulfilled simply by being alive
Both definitions have merit. But it’s vital to ask, which one serves you best in this season of your life?
Conclusion: Rewriting the Narrative
To those walking through rare diagnoses, health struggles, or silent battles, know this: your definition of success matters. And it doesn’t have to match the world’s version.
Mine evolved out of necessity. And I wear it proudly now.
A rare diagnosis redefined me, not as someone broken, but as someone reborn. From corporate chase to personal grace, I’ve found success in places I never thought to look.
So, here’s to growth, to gratitude, and to never underestimating what healing can teach us.
Disclaimer
I’m not a doctor; these reflections are based on personal experience and do not constitute medical advice. Always consult your healthcare provider when exploring therapeutic options.