I’m waiting to find out whether my scleral lenses are going to be covered by health insurance and I stumbled across a post on one of the keratoconus blogs I read. She talked about the high expenses of her contact lenses and vision care: she had to take out a small bank loan to cover various testing and experimenting with different types of treatment (there are multiple types of lenses and surgical treatments depending on how severe the deterioration is) .
I talk about the cost of my lenses all the time (right now I’m paying about $1500 out of pocket, it may be more soon) because it’s not covered by my insurance and I have been a freelancer for a big chunk of the time after I’ve been diagnosed with this disorder. It’s like a feedback loop of needing to work to pay for my care but also not working as much as I could when my eyes weren’t functioning properly. It can be so stressful to balance my daily life in that way. On the other hand, I feel so fortunate, to have a support network, doctors who understand how to treat what I have, and a flexible work situation through freelancing. A lot of people, too many people in the U.S,. don’t have one or all of these things so a disorder that’s rare but treatable could easily mess up your job or your life.
I mention all this not to complain but to point out that I don’t think of myself as “sick”, but I still have pretty gnarly regular bills that aren’t covered.by insurance. In addition to the daily headache of dealing with KC there’s the additional headache of dealing with paying for this daily care.
We don’t have an infrastructure, especially in this country, to make this kind of daily health care accessible for people, you’re either catastrophically sick or completely well in the eyes of insurers, and when you add the growing number of people in this country that rely on the gig economy as their main source of income, the precariousness of daily health care for so many is a reality that has been made more personally clear to me.