Keratoconus doesn't follow a one-size-fits-all path; it develops gradually through stages—mild, moderate, and severe—and right now, I find myself navigating two of them.
Mild Stage: The Early Days
In its mild form, keratoconus is often managed with glasses or soft contact lenses. Honestly, I feel a bit jealous of those still in this phase. There’s more freedom, fewer worries, and better wardrobe flexibility (hello, stylish frames!). That used to be me. I’ve always loved a good pair of glasses. Before I knew I had keratoconus, I wore protective goggles during sports mainly because I feared my regular glasses would break. I had no idea my corneas were already changing shape. When I was diagnosed at 30, I was still in the mild stage. Glasses worked well enough, allowing me to navigate life without much issue.
Moderate to Severe Stage: A Shift in Clarity
Over time, things changed. Today, my left eye is in the severe stage, and even with glasses, my vision doesn't improve beyond 20/40. My doctor recommended corneal cross-linking (CXL) to help slow or halt the progression. Before the procedure, I was seeing around 20/50 in that eye. I struggled to make out the letters on the chart—not even close. My doctor said, "No lens will get you to 20/20." That moment hit me hard. Just a year earlier, I hadn’t faced any significant issues. It wasn't until I tried scleral lenses that I experienced true clarity. That lens gave me 20/20 vision in my left eye—something I didn’t even realize I had been missing. The difference was both shocking and emotional. I began to see people in a completely different light, noticing wrinkles, smiles, and architecture—details I hadn't seen in years. I rediscovered the texture of life.
What I've Changed
Living with keratoconus has taught me to move differently in the world—and to stop apologizing for it. Here are a few shifts I've made:
- I no longer apologize for not seeing something clearly.
- I avoid driving at night, especially in unfamiliar areas.
- I pull over when visibility is low; those bright beams from other cars can be overwhelming.
- I let my phone remind me when it's too close to my face (and I appreciate the nudge!).
Living In-Between: My Right Eye
My right eye hovers around 20/30, but that number is inconsistent; it changes depending on the lighting and how tired I am. That’s the thing about keratoconus—it’s dynamic. What works one day might not work the next. As keratoconus progresses into the moderate and severe stages, symptoms like halos, ghosting, double vision, and light sensitivity often become part of daily life. For me, managing these changes requires a complete toolkit. Corneal cross-linking has helped halt the progression, while scleral lenses have given me back sharp clarity. Glasses still play a role, especially for my right eye. I rely on sunglasses to manage light sensitivity and artificial tear drops to ease dryness. Together, they form my personal arsenal—each piece helps me maintain comfort, confidence, and a connection to the world around me.
💡 Final Thoughts:
Keratoconus isn’t just a condition measured in vision numbers; it’s an emotional and practical journey. Each stage brings new challenges, adjustments, and small victories. If you’re just starting your journey or have been managing it for years, please remember: you’re not alone, and better clarity is still possible.
