When I received my diagnosis of keratoconus in 2014 in Greensboro, North Carolina, I found myself grappling with the news in stunned silence for a few hours. It was as if I had awakened from a dream, realizing that my perception of the world was not as universally shared as I had thought. I had been blissfully unaware that my so-called “secret superpower”—seeing halos around lights at night—was anything out of the ordinary. Naively, I believed everyone experienced the world in a similar way.
I was unable to comprehend that when my grandparents questioned my habit of reading *Babysitters Club* books in a dimly lit corridor, their inquiry stemmed from their concern for my vision, rather than frustration at my stubbornness. After all, most people require an abundance of light to see clearly. In my immediate circles of family and friends, I was a solitary figure, the first—and perhaps the only—person diagnosed with keratoconus. The yearning to converse with someone who truly understood my experience beyond my doctor lingered, but at that time, I had no idea where to begin.
For years, I chose not to reach out to anyone online. However, it wasn’t until 2023, when my keratoconus progressed, that the weight of my isolation pressed heavily on me. While the treatment suggestions from my doctors were certainly beneficial, they couldn’t fill the emotional void I felt.
I often found myself longing to ask someone:
- "How did you feel when you received the diagnosis?"
- "What strategies helped you cope during challenging moments?"
Upon finally mustering the courage to seek connections, I stumbled upon the Keratoconus Organization online, a beacon of hope that opened the door to a supportive community. I also learned about the Rare Disease Network through my therapist, which unveiled a treasure trove of resources for navigating the complexities of living with uncommon conditions.
My journey into social media led me to Instagram, where I began following relevant groups. Engaging with the community brought unexpected comfort as I chatted with a few individuals in the comments section—these voices that echoed my own experiences. During my first surgery, I serendipitously discovered Dr. Barnett’s podcast- Clearly KC, where two guests shared their deeply personal keratoconus journeys. Inspired, I reached out, and to my delight, we forged a meaningful friendship.
After sharing my journey with friends and family, a remarkable twist of fate occurred: my cousin met someone at the grocery store who had undergone cross-linking treatment. She introduced us, and that chance encounter blossomed into a cherished friendship, offering invaluable support during difficult times. Watching testimonials on the Glaukos page also provided immense comfort; seeing real faces attached to stories made it clear that others had traversed similar paths, lightening the burden of solitude.
One of the most transformative aspects of my journey has been therapy. Living with a condition that few people understand can be profoundly isolating. Therapy has been a sanctuary for me, allowing me to process the swirling emotions tied to my diagnosis, advocate for myself with greater confidence, and navigate the nuances of daily life.
🌿 **A Few Reminders:**
- Support doesn’t always manifest as a large group chat or a formal gathering. Sometimes, it appears in the form of a direct message, an insightful podcast episode, or a brief yet meaningful comment thread.
- Even a single conversation can change your perspective and provide comfort.
- Remember, it’s perfectly okay if finding your community takes time. There’s no rush—you will discover your people when the moment is right.
If you're searching for a starting point, consider exploring hashtags like #keratoconus, joining the Keratoconus Foundation, or delving into the Rare Disease Network. Though the keratoconus community may be small, it wields incredible strength. There are individuals out there eager to share their experiences, offer support, and remind you that your journey is significant.
✨ Your people are out there—your story holds meaning, and you are not alone.
