How has it been living with keratoconus?
The world is blurry. Very blurry. Words, faces, everything just seems out of focus and I walk around seeing shadows, no real clarity, just mixed colours and shapes.
Sometimes I can see that there is someone there, but I can’t properly recognise who it is until they are right next to me and the moment I really realised this was happening was one time in class. My teacher was standing in front of me and I could see there was a person there, but I couldn’t properly recognise him. It felt like I was seeing him in two, like a slight double image and no matter how much I tried to focus, it just wouldn’t come together properly and honestly it was scary.
And it turns out I’ve had eye problems since I was a child, but I didn’t really understand that my vision was getting worse. It was gradual so I didn’t realise how serious it was at first.
At age 18, I started realising something was wrong because my vision was getting worse so I went to the hospital and I was told I had myopia and astigmatism and I was given glasses for the first time with a prescription of -8 in my left eye and -3 in my right eye. I thought glasses would fix everything but even with them I still couldn’t see properly.
Between 2023 and 2024 I kept going from one hospital to another, searching for answers as my vision continued to get worse. it felt like nothing was stable anymore and with every check-up I was scared of what I would hear next
By 2025 I was finally diagnosed with advanced keratoconus (stage 3). I also have amblyopia which makes everything even harder to see clearly and by that point my prescription had reached very high levels -16 in my left eye and -9 in my right eye.
Later in 2025 I had corneal cross-linking (CXL) surgery in both eyes. Al Hamdu Lillah it helped stop the progression of the disease and I’m grateful for that.
But after the surgery, I was told to try scleral contact lenses and after tests I was told they wouldn’t really improve my vision because my condition was already too advanced.
It has now been about 10 months since CXL and I’m still under follow-up and I’ve been told that a corneal transplant may be needed, but I haven’t done it yet and honestly I’m scared, not just of surgery but of what I’ve heard about rejection and complications.
And this is when it really started affecting my everyday life
My daily life has become very difficult. I overthink a lot and sometimes I fear what the future might look like and that’s tiring, not just physically but mentally too and I’m always trying to see, trying to focus, trying to make sense of what I’m looking at and I think I’ve almost forgotten what clear vision actually feels like. One hospital visit made me realise that what I see is not how everyone else sees the world and realised how much detail I had been missing from my vision and that felt like I was living behind a foggy window for so long… I just didn’t realise it.
And my family? They’ve been my biggest support through all of this. They’ve stood by me in ways I can’t even explain. I’m really grateful for them.
And as for my goals… there are still so many things I want to do in life like sewing, learning to drive, focusing on my studies and building my future, but my vision makes things harder than I expected.
Still, I’m holding on even though sometimes I feel like keratoconus has slowed parts of my life down, I just hope for enough improvement one day to live more freely and do the things I want In Shaa Allah.
To anyone else living with keratoconus… you are not alone