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A Very Honest Talk About Keratoconus

A Very Honest Talk About Keratoconus

It's been 6 years now since I discovered I have keratoconus.

I guess it took me a while to talk about it openly because it is a little bit hard to express how I feel about keratoconus sometimes. I mean yes, it is annoying and unpredictable but it's not painful and I'm not gonna die of that. So, every time I have a bad day and my vision is particularly blurry I feel really sad but I don't share that quite often because I don't want to look like a negative person or a boring complainer. I am so grateful for everything I have in my life that I convince myself it would be pointless to focus on that one negative thing that is keratoconus.

But honestly, today I feel differently. While I was driving home I couldn't see the traffic lights properly and I suddenly felt so sad and discouraged that I had to stop on the road for a few minutes.

Let's take a step back.

My name is Anna, I am a 25-year-old girl from Italy and I discovered that I have keratoconus when I was 19. I still remember that I was attending my Organic Chemistry class at uni and I couldn't see any difference between a cyclohexane and a benzene when the professor wrote them down on the blackboard. "Wow, I really need to get some sleep", I thought, but the next few days the whole world was getting blurry. So I talked to my ophthalmologist, who sent me to a specialised doctor and he said that it could have been this keratosomething, which it was indeed. He told me that my stage wasn't that advanced, that cross-linking was an option but since I was over 18 yo we needed to wait up to 6-8 months and see if that keratosomething would not develop. Well, that wasn't the case. After 4 months my eyesight deteriorated and we immediately cross-linked both my eyes.

How did that affect my life? Honestly when the doctor told me that I have keratoconus, yes, I felt upset, for sure, but I also felt relieved. I have spent my entire childhood not seeing well and complaining with both my parents and my ophthalmologist for the glasses I had to wear because they didn't work for me and finally somebody was able to figure it out. I felt like a huge weight had been lifted off my shoulders - it's nothing too serious and now that I know my enemy, it's gonna be easier to fight. At least that's what I thought.

But I came to realise that you can't fight keratoconus, you just have to accept it and deal with it. You just have to deal with the fact that you're going to see that halo around lights and night driving is gonna be a serious problem. You have to deal with the fact that maybe you'll be needing a little bit more time to study for an exam because reading is harder with that double blurred vision streaking effect.

You have to deal with those unimaginable dry eyes every single morning you wake up. You have to deal with the fact that when you are at the opticians you can read almost all the letters on the chart, but anywhere else your vision changes because it's all about the lighting and maybe the weather as well. You have to deal with those bad "eyes days" when the world just looks like a messy blur and computer work is almost impossible. Maybe you have to deal with the fact that you keep using your glasses because you just can't afford those expensive contacts right now. It could be that you'll have to deal with balance issues, headaches, dizziness and last but not least, you might have to deal with those people, sometimes even relatives and friends, who just don't get the struggle and think you're being vain.

I usually like to keep positive and stay away from negativity, so normally I would repeat to myself that all these things I wrote above are not that bad and it could be worse. However, sometimes I'd feel wretched and frustrated anyway. And it is totally fine! You should never let keratoconus affect your positive attitude, but sometimes it is ok to not be ok. So, what I do is I let myself be the Debbie Downer for 10 minutes, maybe an afternoon or even an entire day, I talk to someone, I get mad about the unfairness of my condition, then I pick myself up and I get on with it. Something that I found really helpful these past few years to keep a positive mindset has been:

1) learning everything I could about keratoconus and stay updated on possible treatments so I could get to know better my condition and potential solutions to discuss with my doctor;

2) valuing my time and energy - some people might bring unnecessary complexity to my life and I'd rather set boundaries to avoid more chaos or stress;

3) this community - reading about other people facing the same problem, feeling the same way about it, maybe getting better or just getting their life going has helped me so much in making me feel understood and inspired. So I just hope that, if someone will ever feel upset about their condition but is surrounded by people with a 20/20 vision-perspective, they’d feel better reading my experience. You might feel alone in your struggle, but you are not!

From my last eye examination I realised that my keratoconus is really aggressive and is slowly stealing my vision away, so more treatments need to be considered. I am not sure what is going to happen, but If I learned something from my keratoconus experience is that I can only focus on what I can control, so I'll keep working toward my goals trying to welcome the future instead of getting worried about the unpredictability. Well, until the next traffic lights won't send me into an emotional meltdown. I wish you luck and send you lots of love.

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