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My Keratoconus Journey - A Story of Denial and Acceptance

I know that I will have good days and bad days, but I refuse to surrender my positive attitude to keratoconus.

My name is Hannah. I am a daughter, a sister, a niece, a cousin, a friend, an artist, an avid reader, a photographer, and so much more. I also happen to have keratoconus. This is my story. I don’t really know why I’m writing this. It’s therapeutic, probably, and I also hope that at least one person can relate to my story. Before I begin, I apologize if I ramble. Brevity has never been my strong suit.

I was diagnosed with keratoconus in early May 2019. But let’s back it up just a bit...

I remember in elementary school, I started noticing that I was the only one in my immediate family (and among pretty much all of my aunts, uncles, and grandparents), who didn’t have to wear corrective lenses or glasses. I thought, “Wow, how lucky am I! Perfect vision for me!”

In middle school, my dad took me to the eye doctor for the first time and I realized that maybe my vision wasn’t the best. They gave me contacts to try, but I was only able to wear them for part of the day, then I would give up and take them out. Eventually, I gave up altogether and stopped wearing them, but I was adamant that I didn’t want glasses. I was already teased for being a good student and I didn’t need glasses to round out my “nerdiness.”

In high school, I started noticing a slight decrease in my vision, but I just sat closer to the front of the class and dealt with it. I remember one day in biology, we were learning about eyes and we did a mock vision test to see how our vision compared to the 20/20 standard. Mine came up as 20/100 in one of my eyes. I laughed it off as a joke. After all, goofy high school kids aren’t optometrists and this test can’t be that accurate, it’s just a way to keep us entertained, right? Right?

In the summer after my freshman year of college, I went to the optometrist again. At that appointment, I was diagnosed with astigmatism and given contacts again. However, that was the same summer that horrible wildfires came through my hometown and left tons of smoke in the air, so my eyes rebelled. I tried the daily contacts for a while, and I tried to wear them most of the summer, but when I ran out of my last box, I didn’t really bother to get a refill. They were pretty expensive and after all, I could still see, just not the greatest, right? Right? I still passed the DMV vision test for driving, so how bad could it be?

Cut to about a year later in college, when my friend and I were bored one day and went for a drive. “Wow, look at all those cows on that hill!” I exclaimed to her. She looked over at me with a confused, yet slightly humored face “umm, those are shrubs...also, you need glasses…” “oh, haha, yeah, probably…” I said, as I sunk back in my seat and started to think about it.

I finally went to Wal-Mart and got glasses from the last prescription that was on file for me at the eye doctor from my hometown. I still remember putting them on, turning around, and looking down one of the aisles. I was amazed at the difference. I got headaches the first few days that I wore glasses because my brain and my eyes were trying to adjust to not having to strain all the time. Wearing glasses wasn’t perfect. I tried to take care of them, but I’m clumsy and it didn’t take long for the lenses to become scratched. I also was realizing the struggles of wearing glasses: opening the oven and being temporarily blinded by steam, washing dishes and getting water splashed on the lenses, forgetting to reapply sunscreen on my face and having tan lines for the next three weeks, trying to itch my face and smudging my glasses instead, trying to take a picture and avoid glasses glare, and the list goes on. Despite all this, I am grateful for the time that I wore glasses because of the increased vision they provided me.

After two years of wearing glasses, I started to notice that they weren’t working like they used to. I figured that my eyes had finally adjusted to not working as hard and I just needed a stronger prescription. That was the longest that I’d ever worn corrective lenses, so I had no idea how fast or slowly prescriptions change. Plus, I could do with new lenses because of all the scratches anyway.

That’s when I decided to schedule an eye doctor appointment; my first in three years.

I sat down in the chair and they had me take my glasses off to read the letters on the screen. I sat there for a second, half wondering if they were messing with me (there is no way people actually see that tiny bottom row, right? When did they start putting numbers on these charts?) and half scared because I didn’t realize quite how horrible my vision was, but in the back of my mind, I was still making up excuses (I had been staring at my work computer for most of the day, so my eyes were tired…) However, the tests with my glasses on weren’t much better.

After having me run through vision tests and examining my eyes for a while, the doctor finally took me to another room and ran another test on me: a corneal mapping test, though I didn’t know that’s what it was at the time.

Back in the exam room, he finally told me the diagnosis and we discussed options. He wrote the name of the disease down on a paper for me so I could do some research on my own, but he also told me not to get too paranoid about what I saw online. After the appointment, I texted my parents that I would give them an update over the phone after work. I didn’t have much time to process the news right away because, when I got back to work, it was busy and I jumped right back in. That night, I updated my parents and began my research online.

Several more follow-up appointments later, I finally got scleral contacts. Stories that my mother had told me about her time wearing the old-style stiff contacts and how painful they were flashed through my head when I saw the huge lenses, but I also knew that’s what I needed to do to make my vision better.

My friends all say “how are you able to put those in? Ugh, that weirds me out. There’s no way I could put something in my eye like that!” I’d respond with, “well, it is nice to be able to see clearly, so that’s pretty much my main motivation…”

Now, I have to wake up just a little earlier to be able to get out the door only slightly late for work. I also feel a bit like a mad scientist in my bathroom every day: holding my contacts up to the light to make sure they are clean, filling them completely to the top with saline solution, and cleaning them at night.

Battling my insurance companies has also been a real struggle. I am grateful to have good medical insurance, but it doesn’t include a vision plan. Most insurance companies hear “contacts” and they refuse to cover them, despite being medically necessary. My eye doctor is great and is currently working with the insurance companies to try to get them to cover the cost of the contacts and the corneal collagen cross-linking (CXL) procedure. Hopefully this happens sooner, rather than later so that I can slow down the progression without losing too much more of my eyesight.

I’ll be completely honest, losing my vision scares the h*** out of me. I have had a few people ask me, before my diagnosis, if I would ever get Lasik and I would say that I don’t want it because of the very low (but still present) risk of vision loss. I used to play games like “would you rather” and my response to “would you rather be deaf or blind?” was always be deaf, if I had to choose (not to minimize the difficulties and challenges that someone with hearing loss faces on a daily basis). I am an artist. I love bright colors and I love seeing beautiful sunsets, flowers, waterfalls, and so much more. I don’t want to have to live with these things as just memories. I am lucky, though, because I was diagnosed in the early stages, so I can get CXL to (hopefully) stop the progression before I get to the point of needing a corneal transplant.

For me, having keratoconus means being better at remembering to bring my sunglasses with me almost everywhere I go, visiting the optometrist several times a year to monitor progression, avoiding driving at night if possible, accepting that I won’t be able to see well when swimming (because I can’t wear my contacts in the water), and a few more minor inconveniences. It also means that I am a fighter. I am usually a pretty passive person, but I will take it into my own hands to fight with the insurance companies for coverage if I have to. I know that I will have good days and bad days, but I refuse to surrender my positive attitude to keratoconus.

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