Having keratoconus is kind of like having a mental illness in a way. Since people can’t see it, you might as well not have anything. :V

It’s not like a broken arm and you can’t really SEE the cornea deformation unless it’s extremely severe, and scarring are for very heavy cases. So a part of my life for the last month and an half have been dedicated to me being a broken record and repeating the same things over and over. People then either proceed to be fascinated (which I don’t truly mind as long as it’s not in an obviously rude way and are respectful if im not in a mental place where I want to elaborate) or proceed to think im bullshiting, which is infinitly more insulting. Because honestly, do you think I would rather have my eyesight back to the way it once was, or whatever attention you think im trying to whore ? Because you know what kind of attention im getting ? People literally acting like im blind, helpless, and doing shit for me.

(General you, by the by. I have a lot of feelings about this.)

Still, I get a lot of questions. And that’s understandable ! I didn’t even know something like this existed until I got the word thrown at my face and basically told to get the fuck out and wait for my referral. So if by some reason you stumble onto this post by googling it after a diagnosis : I am so sorry. It sucks. Hopefully yours got caught at an earlier stage than mine, and hopefully your optician was a lot less dickish than mine.  Here’s a few facts that I gathered in my own research :

The initial symtoms of keratoconus are very similar to a more natural vision change. Getting your vision checked every year or two is very important, DOUBLY so if there is any kind of history of eye diseases in your family. Make sure they keep you up to date. I had a note of me being at risk of keratoconus for YEARS but no one told me until the first real symptoms showed up. Don’t be me. If you have any doubt that you’re not being told everything, find another optician.

The disease tends to start in puberty and is often not properly diagnosed until early adulthood for the reasons listed above. At 30 im technically pretty old for a diagnosis, but according to optician #2 I am also a very advanced case (while optician #1 sent me to #2 saying it was minimal and any action was preventive, go fucking figure)  but my vision has started changing when I was 15 or so. My symptoms weren’t visible and obvious until the light sensitivity started actively bothering me. I have little else in term of symtoms still to this day, which is a small boon of forture in a sea of fuckery.

You can’t GIVE yourself keratoconus. There still isn’t much actually known, but right now the cause are mostly liked to genetics and environmental factors. There is no link in between say, computer, tablet, and phone usage and keratoconus as far as I’ve been able to see. Aggravating factors includes excessive eye rubbing and allergies, but it seems more like something that help the disease worsen rather than an actual cause.

Having keratoconus does not mean your vision is bad. Contradictory ? A little. But allow me to explain. Karatoconus is a deformation of the cornea. UNDER the cornea, however, if there is nothing else going on, your eye is perfectly fine. The irony of my situation is that my eyesight is literally the best it’s been in years… my cornea’s deformation is just wrecking everything for me. Any near/farsightedness you may have that is not caused by keratoconus will remain though any treatment you may have. DO NOT HAVE LASIK DONE WITH KETACONUS. It will not fix everything, it will in fact make everything worse. You CANNOT go blind from keratoconus alone.

Adjusting glasses or contact lenses with keratoconus, however, IS A BITCH. It’s night impossible to do it 100% correctly with the deformations and not really being able to predict how things will evolve. If you find yourself finding new glasses every year, it’s a good sign that something might be up. I recommend getting transitions/glasses with magnetic clip ons and anti-blue light coatings (called preventia here, but not sure if thats so everywhere) if you are light sensitive, it will help, but it won’t work miracles. You don’t HAVE to get new glasses every year unless you notice a huge difference during the tests.

The symptoms of keratoconus will vary depending on how your cornea is deforming. Some people’s vision go completely distorted no matter what. Some heavy deformations get scars on their cornea. I was lucky enough that it wasn’t the case for me. Small objects can be a bitch to find if I drop them and don’t get to see where they went, but that’s the extent of my problems there. The way my cornea is distorting, however, allows much more light into the eye that there normally should be. I am therefore refered as light senstitive, but I have noticed that not all light is created equal. At night, my vision is near perfect beyond there being a faint halo around any light source. Eyestrain due to having to squint a lot to limit light entry is common. If im tired, my vision goes completely to shit. Forcing anything will only give you a bigger headache that the one you already have by trying to deal with all this shit. If you need to rest, rest.

Do your best not to rub your eyes excessively. Weither you have kerstoconus or not, it’s not a good thing. If you have keratoconus, it’s an aggravating factor. I’ve always been a chronic eye rubber when tired so I have to do my best to kick the habit off.

I want to compile a list of tips and tricks that even those without keratonconus might find useful, but putting said list together is proving to be more of an undertaking than I expected, so this is going to be a two part post. And hey, more content on this barren blog can’t hurt, right ? << Herp.

Have a cute cat for your troubles :