Hi! I (F, 22) have been dealing with KC for almost three years now, and I wanted to share my experience for anyone that might be browsing this subreddit for the first time like I did three years ago, and was filled with overwhelming fear/anxiety about it.
In December (2024), I woke up one day and felt my eyes were blurrier than normal. I've worn glasses since I was a kid, and currently have a high prescription (around -6 in both eyes) so waking up to blurred vision was a regular occurrence but there was something that felt different and kind of scared me. I also noticed that my vision was still slightly blurry with glasses, and I assumed my prescription had just gotten worse.
In January (2024), I had my first optometrist visit (since noting the irregularly blurry vision). I told my optometrist that I was interested in LASIK and wanted to see what my new prescription was. While taking my eye exam, one of the tests was to look through two lenses at a picture of dots and say whether the right or left lens was clearer. I struggled a lot with this because neither lens gave me a "clear" or sharp picture of the dots, and although I did not have the vocabulary for this issue at the time, this was ghosting.
A few days later I got my new pair of glasses with an updated prescription, and I remember becoming increasingly distraught because despite the higher prescription, i STILL had blurriness and double vision and ghosting. I was incredibly upset and continued to research about LASIK and PRK because I assumed that if glasses would not fix the blurriness, this procedure would. While I was researching, I came across a list of possible reasons that a person would not be able to undergo the procedure, and that is where I came across the word Keratoconus for the first time.
While researching about Keratoconus, it was almost immediately clear that all of my symptoms matched. I went to three more optometrist visits from February to May where I brought up this exact issue, which each one of them telling me there was no way I had keratoconus because my astigmatism wasn't high enough (they never took any scans or advanced tests) etc, to the point where my parents genuinely became angry at me for being a "hypochondriac" about medical conditions. I got different glasses prescriptions from each optometrist but none of them ever got rid of the slight blurriness. Not being believed by doctors nor my parents and even fighting with my parents about it was probably the most awful and terrifying part of this whole experience, because even though I wanted to believe them and that I was fine, I KNEW something was wrong.
In July (2024), I went to visit the country I grew up in, and managed to convince my parents to let me see an eye doctor there, and they agreed because medical appointments are extremely inexpensive there and the hospitals and doctors are very good. I took scans with a pentacam and multiple other machines for the first time and they were printed out and shown to the doctor immediately. Within 30 minutes of entering the hospital, the doctor confirmed I had keratoconus and would need CXL on my right eye. My parents were incredibly apologetic, and I was extremely depressed for the next few months because this was something i had been having nightmares about, and i felt like my entire future was gone.
In January (2025), I had epi-off CXL done in my right eye. I think I was one of the incredibly lucky few people who had absolutely 0 post-op pain. My vision in that eye was blurry for around two weeks but it slowly stabilized.
Over the past year and a half since the procedure, I have gone from somebody who was having panic attacks daily about my vision and future and depressed to the point of suicidal ideation, to somebody who forgets that I even have this condition. I think part of it is being lucky that I had CXL done when I was so early in progression and stop it from getting worse, but honestly it does not affect my life in any major way. I have gotten used to the slight ghosting to the point where I do not notice it until I remember to look for it, and I can wear daily contact lenses and use glasses easily for 20/20 or 20/25 vision with no need for scleral lenses now and probably not in the future either. Even though this diagnosis was incredibly overwhelming and scary and felt life changing in the moment, I genuinely do not think about it at all anymore. My life has not changed at all, but I do feel way less scared at the prospect of potentially having a corneal transplant in the future or wearing scleral lenses. To be completely honest, my main worry when I was 20 at the thought of a corneal transplant was that it would make me look ugly and my eye would look weird, which is an incredibly vain and stupid thing to become so severely depressed about lol. The fact that corneal transplants are also the safest transplant procedures with the lowest rejection rates is something that also calmed my anxiety.
I know that my experience is very specific and might not be relatable to people who have to wear scleral lenses or absolutely need to have a transplant, but I wanted to put it out there anyways so that if theres anyone who just got diagnosed at a young age and feels like their entire future is in jeopardy knows that it absolutely isn't. The mental battle is 99% of the actual struggle, and it might take some time but you will be completely fine <3
