To All Who Have Keratoconus: You Are a Warrior!


On November 16, 2015—a week and a half before my 21st birthday—I was a nervous wreck sitting in the waiting room for my annual eye check up. I knew there was something wrong with my vision even before I made the appointment so I already expected something... When my name was finally called my steps were shaky, but confident. I was ready to take on whatever the doctor would find.

And when I was seated and told to read the famous Snellen Eye Chart in front of me with just my right eye I felt something in me shake, something foreboding. I told my doctor I couldn't see anything. All the letters were blurry. But when I tried seeing it with my left eye I could see the letters. With a look of contemplation on her face, she started testing my vision some more and finally with the utmost care and compassion, my optometrist said "I think you have something called Keratoconus."

What in the world is that? went through my mind. She then continued to tell me all about this degenerative disease and then referred me to a local ophthalmologist for further testing. After the appointment I went home and googled everything about this disease. From causes to treatments and, as always, the internet left me slightly fearful when I found out there was no cure and that a corneal transplant would be the most probable procedure to fight Keratoconus. At this moment I felt... in denial. I didn't want to accept that this is what I have.

On December 16—a day I will never forget—I met with the referred ophthalmologist. After lots of thorough and extensive tests, she confirmed it and diagnosed me with Keratoconus and that I was a glaucoma suspect. I felt my insides shatter. I remember clearly the many emotions coursing through me: anger, hurt, sadness, fear. I didn't feel like myself after this day. Long gone was the optimistic, strong, and confident Abby. This diagnosis sent me to a place where I questioned myself, my faith, everything. My mental, spiritual, emotional, and physical life were turned upside down and I didn't know what to do nor how to describe my feelings to my friends or family. I felt depressed.

My next appointment was on January 6, 2016 where my ophthalmologist gave me a solution—Corneal Crosslinking. She patiently and kindly explained the process and referred me to the only (and the best) ophthalmologist in Florida who does this treatment. I would have to travel 2 hours and a half to see him, but distance wasn't going to stop me from getting this treatment done. I felt a fight rise inside of me and I was determined to do this; for my vision, for me.

Finally, on March 9th I met with the ophthalmologist who would lead the Crosslinking treatment. After setting the date, I was once again a nervous wreck. Doubts clouded my mind. What if this didn't work? What if my vision gets worse? What if I go blind?

Then the day of treatment came, on April 5th, and the idea to back out briefly crossed my mind, but I banished these negative thoughts and willed myself to go into that room. The inner warrior in me was not going to cower away from this disease anymore.

With the help of my doctor and his incredible team the crosslinking treatment went smoothly. On my way to the hotel, where I would be staying before my post-op the next day, the after effects of the procedure hit me... hard. I don't know whether anyone else has experienced this after their crosslinking procedure, but I felt my eyes ablaze. Although my eyes were closed for the rest of the day because of the pain, it felt as if I was staring directly at the sun for hours without blinking. But thankfully morning came and the pain was gone and I was left with just mild light sensitivity. My post-op appointment went great and I was finally able to go home.

Four months later, on August 22nd, I returned for a checkup and after taking new pictures of my eyes, my doctor saw a difference in my vision. It was one of the happiest days of my life. Till this day I have faith that my vision will one day return back to it's normality, or even better!

Living with Keratoconus has been life changing, challenging, and exhausting, but it reminded me of who I am—a WARRIOR. And to all you who are reading this, to all who have Keratoconus, to all who are fighting something: YOU ARE A WARRIOR.

It's okay to be angry, to be sad, to cry, to shout, but after you've done all that, get up. Don't let a diagnosis or words defeat or belittle you. Replace "I can't" with "I can and I will." Stay strong, keep your head up, have faith, and always keep fighting. You are not alone.

“This might not be easy, but I am going to give it everything I’ve got." - Jared Padalecki

6 comments:

  1. I felt the exact same way. I too travel 2 hours to see my specialist and honestly he is so Worth it.

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  2. Both of my eyes have undergone CXL treatment but eventually corneal transplant was done in my right eye 2 years ago. I'm still waiting for sutures removal and vision improvement. Thank you Abby for giving me a bit of hope.

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  3. A week ago I was diagnosed with keratoconus and I was rushed in for urgent corneal cross linking surgery Monday. I'm on day 3 of recovery, my sight is awful in my treated eye, it itches like hell and my diagnosis is only just sinking in.
    I'm only 26 and I'm half way through my first year of nursing school. I struggle to read drug cards, doctors notes and sometimes struggle to see patients faces. I'm completely devastated. I'm terrified I will not cope with the contact lenses (I'm currently wearing glasses), I'm scared I will never be able to see my future childrens faces clearly or when I finally catch a man be able to see his reaction when I walk down the aisle. I battle with depression anyway and this diagnosis I feel has cancelled out all the improvements I've made in my life regarding my mental health.
    I'm sorry to be moaning to anyone who reads this but I feel my family will only worry or try and force me to feel positive when all I want is for someone to listen.

    Thank you for listening,
    STN Roberts

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    Replies
    1. You have every reason to get angry. I also had the same feelings after CXL in my right eye. Then my left eye took about 2 weeks before I could put on my lenses.

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    2. P.S.
      My left i took about one week to recover.

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  4. I know exactly how you feel. I am still scared to do any surgery sorta stuff on my eye..... So am still wearing GP lenses..... It honestly feels horrible when any of my friends say that they saw me on the road and i ignored them. It's actually because I cannot recognise them from a distance.... Urghhhh ppl just don't get how bad my eyesight is, even while wearing lenses.....

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