There are some conditions that change your life in quiet, persistent ways—shaping the way you experience the world even when others can’t see the struggle. One of those conditions for me is Keratoconus, a progressive and often misunderstood eye disease that has significantly impacted my day-to-day functioning. Compounded by astigmatism in my left eye, the challenges I face are not just physical, but emotional and mental as well.
This post is part of The Sound of Silence, my personal blog dedicated to unpacking the often invisible battles of mental and physical health. Today, I want to share what it’s like to live with Keratoconus—not from a medical textbook, but from the deeply human side of the experience.
What Is Keratoconus?
Keratoconus is a degenerative disorder of the eye in which the normally round cornea becomes thin and develops a cone-like bulge. This distortion makes it difficult for the eye to focus light properly, resulting in blurred or severely distorted vision.
In my case, the condition has stabilized—thankfully, the degeneration is no longer progressing—but the effects remain life-altering. I also have significant astigmatism in my left eye, further complicating how I see the world.
Most people with vision problems are able to manage with glasses or soft contact lenses. For me, these standard tools offer little to no help. To correct my vision, I rely on rigid gas permeable (RGP) lenses, which create a smooth, artificial surface over the cornea, enabling light to focus more accurately.
When the lenses are in, it’s as though the fog lifts. I can see with remarkable clarity—reading, driving, recognizing faces at a distance. It’s a gift. But it’s a gift I can only use briefly.
The Cost of Clarity
Unfortunately, I cannot tolerate RGP lenses for extended periods. While they offer almost perfect correction, they also cause intense discomfort. Within a few hours, I begin to experience burning sensations, eye fatigue, and increasingly severe headaches that can last for the rest of the day.
These headaches aren’t just a mild nuisance—they’re debilitating. They affect my mood, my concentration, and my ability to function in any meaningful capacity. Eventually, I’m forced to remove the lenses and return to the blurred, distorted baseline that defines my uncorrected vision.
This has forced me into a daily calculation: When do I need to see clearly the most? I ration my lens use like a precious resource. Sometimes I save them for a meeting or an important outing. Other days, I choose to forgo them entirely and try to muddle through. But there’s always a cost.
Navigating the Day-to-Day
This condition affects nearly every part of my daily life. Reading fine print, navigating unfamiliar environments, and working on a computer for long stretches are all challenging. Tasks that others take for granted—checking the expiry date on a food package, recognizing someone across the street, even watching TV—become frustrating or impossible without correction.
Worse, this visual struggle can be deeply isolating. I exist in a strange limbo—not legally blind, but not fully sighted. I know what perfect vision feels like because I’ve had it, albeit temporarily. That knowledge makes the reality of my condition harder to accept.
But the most difficult part is how this condition intersects with my mental health.
The Invisible Weight
Living with a chronic physical condition like Keratoconus carries more than just physical symptoms. There is an emotional and psychological toll to constantly adapting, constantly compromising, and constantly feeling like your body is working against you.
It’s hard to explain to others how exhausting it is to start every day knowing your vision will never be quite right—how that exhaustion builds into frustration, and that frustration can spiral into anxiety or depression. I’ve had to adjust my expectations around productivity, social engagement, and even self-worth.
There are days where I simply feel defeated. There are moments when the world around me is blurred not just by my eyes, but by the heavy fog of mental exhaustion.
And yet, I carry on.
Gratitude and Acceptance
Despite the hardships, I remind myself that I am lucky in many ways. My condition has not worsened. I have access to advanced lenses, specialists, and support. Many others with Keratoconus face more rapid degeneration or fewer options for correction.
Still, that doesn’t erase the struggle.
Keratoconus is not a death sentence, nor is it the worst illness one can live with—but it is real, and it is difficult. It’s one of the many “quiet conditions” that disrupt life without drawing attention. And like my other health issues—both mental and physical—it’s part of the complex, often invisible web of challenges that I navigate every day.
Why I’m Sharing This
I’m writing this not just to inform, but to connect. If you’re reading this and living with Keratoconus or another invisible condition, I want you to know you’re not alone. And if you’re someone who loves or works with someone facing these kinds of challenges, I hope this gives you a clearer lens through which to understand what they’re experiencing.
We don’t need pity—we need understanding, flexibility, and sometimes just a bit of patience.
This is part of my story. It’s one of the many layers I carry with me, quietly, each day. And it’s one more reason I’ve chosen to write The Sound of Silence: to give voice to the struggles that often go unheard.
Thank you for reading.
If you’ve found this helpful, or if you live with Keratoconus yourself, feel free to share your experience in the comments or connect with me directly through the blog.
You are not invisible. And your pain matters.
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