When I was first diagnosed with keratoconus, I had no idea what it was. I had never even heard of it — and neither had most people around me. Over the years, I’ve learned that while keratoconus is more common than we think, the misconceptions surrounding it are just as widespread.
So, I’m sharing a few of the biggest myths I’ve encountered and what I’ve experienced and learned.
1. “It’s just regular blurry vision.”
I’d go to the eye doctor every year, squinting at blurry letters. Glasses were prescribed, and they helped—until they didn’t.
Reality: Keratoconus causes irregular astigmatism, which means glasses often can’t fully correct your vision. This isn’t your everyday nearsightedness. It’s more complex and unpredictable.
2. “Glasses will fix it.”
In the beginning, glasses gave me so much hope. I could see the board in school, play video games, and enjoy life with clearer sight.
Reality: Glasses can help in the early stages, but keratoconus usually progresses. Most people eventually need specialty lenses like scleral or rigid gas-permeable lenses—and sometimes even medical treatment beyond that.
3. “It doesn’t get worse.”
I was diagnosed in 2014 and thought I had things under control. I wore sunglasses religiously and adapted to headlights during long road trips. But I learned the hard way that keratoconus can change quickly.
Reality: It’s a progressive condition, especially in younger people. Corneal cross-linking can help prevent it from worsening, but regular monitoring is key.
4. “You can’t do anything about it.”
For a long time, I stayed within the comfort zone of glasses. The thought of surgery or other interventions felt scary.
Reality: Effective options now exist, from cross-linking to innovative contact lenses. My biggest hope is that these treatments become more accessible and affordable for everyone.
5. “It’s the same for everyone.”
When I was first diagnosed, I felt isolated. But as I connected with others online and through my doctors, I realized this journey is wildly personal. My left and right eyes have entirely different needs!
Reality: Every experience with keratoconus is unique. Some people stay stable, others don’t. Some can wear lenses with ease; others struggle. No two cases are the same.
6. “It’s rare and unheard of.”
If you’ve just been diagnosed and feel alone, I’ve been there. No one in my life had heard of it until I mentioned it.
Reality: It’s more common than we thought—especially now that diagnostics are better. But awareness is still low. That’s why we need to keep sharing and talking about it.
Final Thoughts:
Living with keratoconus means adapting, learning, and connecting. You’re not alone—and your story deserves to be told. 💛
