My contacts have slowly deteriorated in fit over the course of 18 months. This now leads to having to regularly take them out, clean them, and reinsert them in the middle of the day. It’s terribly inconvenient when out of the house. The process of getting new lenses is pretty involved. Even though I’ve already done my first appointment for my new fit, because my lenses are custom made, it can take 3-4 weeks easily to get a pair back from the manufacturer. And when that pair comes, there’s often a need for adjustments. It’s not unusual to have to go back 3 or 4 times over the course of months to get lenses with a good enough fit that I can then wear them for 12-18 months before going through the process again.

All of this for a pair of contacts that would cost me $1500-2000 easily, out of pocket, were it not for having just the right kind of insurance that covers one pair of medically necessary contacts a year. I say the “right kind” because the distinction isn’t even “good” or “bad”– at least in the US. It seems somewhat arbitrary (based on online forums) which health insurers will cover scleral lenses and which will not.

Ultimately, things are not so bad. I have not yet had to have a cornea transplant (though this is a real possibility one day). I can see 20-20 with my contacts, despite significant corneal scarring in one of my eyes. Although I do get some intense glare at night, I can still drive, especially short distances. I have some daytime light sensitivity, but I’ll trade that for being able to buy non-prescription sunglasses. I also don’t have the discomfort some people experience, and routinely wear my lenses 14-15 hours a day. There are all kinds of people on Reddit who proclaim they are suicidal over their keratoconus diagnosis, but at least from my experience and my situation, that seems bonkers.

It just makes me wonder what would happen if I were living in a different time or income bracket. I’m effectively unsighted without my contacts. So although my lenses these days are constantly getting covered in schmutz and getting new ones are a pain in the ass, I am grateful.