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Each day is a fresh opportunity to whisper gratitude to the universe. I do this often. It continues to gift me with healing, not just of the body, but of the soul. What follows is my journey, resilience, and rediscovery.
Before the Diagnosis: A Life of Stories
Once upon a time, storytelling meant weaving fictional narratives.
As an Investment Banker, my life revolved around numbers, deadlines, and ambition. I chased achievement, constantly trying to be someone society would applaud. I molded myself to expectations, often neglecting authenticity.
But all that changed in 2016. A medical diagnosis tore through my world and reset the rules of existence. Suddenly, storytelling became deeply personal. I wasn’t creating stories anymore, I was living one, and each word became a way to make sense of it all.
The Day My Life Changed
I was diagnosed with Isaacs’ Syndrome. It is a rare neuromuscular disorder caused by abnormal muscle activity. My body, once reliable, began to feel foreign. Movements became unnatural. Pain replaced ease. Sleep, too, grew elusive.
Then came more revelations: Lyme disease. It is a bacterial infection transmitted by ticks; Glaucoma, a vision-threatening condition that damages optic nerves; and Membranous Glomerulonephritis, a progressive kidney disease.
If that wasn’t enough, my body collected more diagnoses like: Irritable Bowel Syndrome (IBS), Diabetes, Frozen Shoulder, Eczema and Blood Pressure issues. Every part of me seemed in revolt.
But oddly enough, that’s where the healing began.
Becoming ‘Ordinarily Rare’
I created Ordinarily Rare.
It’s not just to narrate my challenges, but to connect with others navigating their health journeys. It is a diary of moments, some painful, others enlightening, all sewn together with the thread of recovery.
Rare illnesses aren’t truly rare when seen through the lens of a large population. Many suffer silently, lacking access to information or community support. I wanted to bridge that gap.
My hope?
That Ordinarily Rare feels like companionship to someone who’s just received a terrifying diagnosis. It sparks conversations, offers hope, and validates the chaos that chronic illness often brings.
Life After Diagnosis: The Internal Earthquake
No one could see it from the outside, but my life underwent seismic shifts. The neurological symptoms, unpredictable and exhausting, rewrote the rules of movement and posture. Even simple routines felt impossible.
Worse still, I questioned who I had become. I felt estranged from my own body. Tasks I once did subconsciously—walking, gripping, sleeping—became calculated decisions. Isaacs’ Syndrome isn’t curable. It’s a lifelong companion, and learning to coexist with it requires emotional rewiring.
Still, the question echoed inside me: If I’m no longer who I was, then who am I now?
The Path to Rediscovery
That pivotal question forced me to reevaluate everything. My values, relationships, habits, even my identity. It was an invitation to strip down to my essentials and build myself back up with intention.
I learned to let go of the obsession with perfection. I embraced my limits, celebrated small victories, and reframed setbacks as lessons.
Most of all, I discovered that vulnerability isn’t weakness; it’s strength.
I began healing emotionally, mentally, and spiritually. In doing so, I uncovered a version of myself far more grounded and gentler.
Support Systems & Self-Care: The Invisible Medicine
Throughout this journey, I leaned into self-care, but not the superficial kinds. They were soul-nourishing rituals like journaling, deep rest, and heartfelt conversations. My support system became my lifeline. Family, close friends, and medical experts formed a quiet safety net that allowed me to keep trying even on the hardest days.
I’ve learned that optimism doesn’t mean denying reality. It means choosing to hope, instead. Through therapy, faith, and reflection, I found meaning amid suffering.
Even as symptoms persisted, my mindset shifted from “Why me?” to “What now?” And that question has made all the difference.
From Painkillers to Purpose
At one point, painkillers were my only refuge. I was chasing normalcy, desperate to feel better. But slowly, I realized that healing doesn’t only come from medication. It comes from acceptance, adaptation, and redefining what ‘wellness‘ means.
No longer an investment banker, I reimagined my life around storytelling, advocacy, and connection. I began sharing my experiences not just to vent, but to help. Because if even one person feels seen and less alone through my story, then it’s worth every word.
Mind You: This Story Isn’t Just Mine
Sure, this is my battle. But it’s also yours, because we all carry invisible burdens.
Ordinarily Rare is more than a personal chronicle; it’s an invitation. To those living with chronic or rare diseases, to caregivers, and even to those who feel lost in daily life, this platform is for you.
Here, we talk about how faith, community, and the ordinariness of everyday life. And while our stories may differ, the emotional truths we uncover often echo one another.
So, I encourage you to reflect on your version of ‘ordinarily rare’. Maybe it’s silent, a secret dream, or a challenge that no one seems to notice.
Please share it. Celebrate it. Let it be our guide.
Final Thoughts: Strength in Numbers
Even when the world feels heavy and progress is slow, recovery is worth it. Every step, however tiny, is a triumph.
Rare diseases may not dominate medical textbooks or headlines, but they change lives. And where there is change, there is opportunity for growth, and purpose.
If you’ve stumbled here through pain, confusion, or curiosity, know this: you’re not alone. In the space between the ordinary and rare, extraordinary stories unfold.
Disclaimer
This article reflects personal experiences and insights. It does not serve as medical advice. Always consult qualified health professionals for treatment and diagnosis.