A letter to myself: Keratoconus is not black, it's a colorful blur!
My name is Beth, I was diagnosed with keratoconus at 13/14, I live in England.
Dear Myself (on the day i was diagnosed)
Wow you weren't expecting that were you. You're going to go home now and google everything possible to try and understand whats going on! Don't click images though, that's just going to scare you. I know you're thinking one day all you'll see is black, but that's not going to happen, don't panic.. Its not black it is a colorful blur!
You're going to be fine through high school just wearing glasses and even without your glasses on you'll still be able to do most things with no hassle at all. Please, please make the most of these days. Take in every view mum and dad tell you to, the world really is beautiful and seeing it with no pain in your eyes is amazing, so take it all in and have lots of fun! I know you will anyway.
College is going to be a bit harder but stay strong. You're healthy, you're alive just make the most of the positives. Standing at train platforms waiting for friends will become impossible, you wont be able to see your friends, you'll appear ignorant to everybody because you cant see they're there. You will still be able to see don't panic but peoples faces will just become very blurry at further distances.
But after a year of college you'll get referred to a contact lens specialist, and a keratoconus specialist (be nice to them, they're amazing and you will be seeing loads more of them!)
You'll be given soft lenses called kerasofts, they wont make your vision perfect but good enough to be able to live again, happily seeing everyone's faces!
After that you'll have a good few years, keratoconus won't really bother you. You'll just get on with it.
Once you've started working though you will begin having problems again but just stay calm, it is upsetting and it is scary but you can get through it, promise! Your lenses will stop working due to lumps on your eye lids and this problem just keeps occurring! Changing from rgp lenses, piggybacking to hybrid lenses. Lots of infections, lots of time off work. Job changes but all for the right reasons.
Eye drops are going to be your life! Just put them in all the time, never get lazy.
There's a lot of worse things going on in this world and every second you get to see something beautiful just take an extra second to take it in. You've got a fantastic family and an amazing partner that will help you through every step. Sometimes you'll need a cheeky cry, let it all out but then 'fix up, look sharp' and above everything always be a good, kind person!
Many thanks to Bethany for sharing her experiences.
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