Imagine waking up one day and realizing that everything you once took for granted—grabbing a quick bite to eat, walking through a store, even stepping outside on a hot or cold day—now requires careful planning and constant vigilance. For many of us living with rare diseases, this isn’t hypothetical. It’s our everyday reality.
The Diagnostic Odyssey: A Journey No One Chooses
When you have a rare disease, getting diagnosed can take years—sometimes even decades. This is what’s known as the diagnostic odyssey—a long, frustrating journey filled with misdiagnoses, dismissals, and endless medical appointments. Unlike common conditions with clear-cut diagnostic pathways, rare diseases often present with symptoms that don’t fit neatly into a textbook.
For me, my journey was anything but straightforward. I spent years being told my symptoms were “in my head,” that I just needed to “manage my stress better,” or—my personal favorite—being advised to “go on an eight-week meditation retreat” and things would get better. But when your body is constantly reacting to foods, scents, temperature changes, and seemingly harmless everyday exposures, you know something deeper is going on. It wasn’t until I was finally diagnosed with Mast Cell Activation Syndrome (MCAS), adenomyosis, Glucose-Galactose Malabsorption (GGM), Chronic Fatigue Syndrome (CFS), and Complex PTSD (CPTSD) that I began to truly understand what was happening inside my body.
"But getting a diagnosis wasn’t the end of the road—it was just the beginning."
A World Built for the Able-Bodied
Our communities, workplaces, and even social lives are designed for people who don’t have to think twice about accessibility. Whether it’s the assumption that everyone can eat at a restaurant without worrying about cross-contamination or the expectation that everyone can tolerate perfumes and scented products, society often forgets those of us who live with chronic illnesses and disabilities.
Overnight, after a shocking discovery and years of wondering why I had so many gastrointestinal symptoms, I had to shift to a gluten-free, dairy-free, sugar-free diet—not because it was trendy, but because my body simply couldn’t tolerate these foods. Finding safe options became a daily challenge, and navigating social situations suddenly felt isolating. Add in the fact that I have to limit my exposure to scents, heat, and cold—all major triggers for my conditions—and you can start to see how simply existing in the world requires a level of planning that most people never have to consider.
It’s Not a Competition—It’s About Compassion
One of the biggest misconceptions about chronic illness and disability is the idea that we’re competing for the “sickest” title. In reality, this journey isn’t about comparing who has it worse—it’s about compassion, empathy, and listening to understand.
Instead of assuming someone is exaggerating their condition, ask how you can help make their day a little easier. Instead of debating whether an accommodation is truly “necessary,” recognize that for many of us, small changes can mean the difference between functioning and completely crashing.
This is why I’m writing my book—because these stories matter. The long, painful diagnostic journeys. The everyday struggles that aren’t always visible. The resilience it takes to keep showing up in a world that often doesn’t make space for us.
Everyone has their own unique story, challenges, and triumphs—just like the stripes of a zebra, which represent the rare disease community and the 300 million of us living with a rare disease. I encourage you to visit the official website of Rare Disease Day to learn more and see how you can support others in the community.
Let’s Keep the Conversation Going
Rare Disease Day is about raising awareness, but it shouldn’t stop here. Whether you’re someone navigating chronic illness or just someone who wants to learn how to be a better ally—I invite you to stay connected.
I’ll be sharing more updates on my journey, my book, and ways we can work together to create a world that’s more inclusive for all of us. Let’s start by having these conversations, listening to understand, and finding ways to support each other.
Because at the end of the day, everyone deserves to feel seen, heard, and included.
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