If you have known me for longer than a day, or had a conversation with me that has lasted longer than 20 minutes, you’ve probably heard me talk about my “stupid eye problem” or “my vision problem” or the fact that I am “slowly losing my vision.” Some people respond to such a reference with “oh yeah I know what you mean, I wear glasses, I’m really nearsighted.” I’m here to say that unless you have a disorder called Keratoconus NO YOU DO NOT. But a lot of people don’t really get what I am referring to, so I thought I’d explain.
What is Keratoconus? Here’s what Wikipedia says:
Keratoconus (KC, KTCN) (from Greek: kerato- horn, cornea; and konos cone) is a degenerative disorder of the eye in which structural changes within the cornea cause it to thin and change to a more conical shape than the more normal gradual curve.
Keratoconus can cause substantial distortion of vision, with multiple images, streaking and sensitivity to light all often reported by the person.
It is typically diagnosed in the person’s adolescent years.
If both eyes are significantly affected, the deterioration in vision can affect the person’s ability to drive a car or read normal print.
So what does this mean for me, exactly? I’ve had keratoconus for about 7 years, it’s progressively gotten worse, to the point where I now need specially-fitted contact lenses in order to see. If I don’t wear them, life for me is like this:
One thing that is especially difficult is reading. Which, when writing and editing for websites is your job, is a pretty essential skill. In the past 4-5 years especially, my disorder has become a constant source of stress for me. One of the things that makes it hard is that my contact lenses are not gas-permeable, and therefore prone to cause painful irritation and infection. Which means I have to take them out. Which means I can’t see.My cornea has become so misshapen/pointy that I can’t wear glasses anymore, when I do my eyesight still looks like this:
So the contacts are a must. I can’t see without them. What’s more, I am now prone to extreme,painful light sensitivity, which makes working in certain environments a major pain in the ass.
All that to say, I spend a lot of my time these days being hyper-aware of my environment: light, air pollution, humidity… as they all affect my ability to see. Sometimes I will do everything I possibly can for myself and still get an eye infection, and that really sucks.
I feel like I had a lot more fun, that I was a lot more fun 4-5 years ago when this wasn’t a constant part of my daily life, mostly because i live with a lot of fear.
- What happens when my eyesight deteriorates to the point where the contacts don’t work?
- What if surgery is so expensive it financially ruins me?
- What if I can’t work for several months?
- What if there’s nothing I can do in the future to revive my career if I stop working for a bit?
- What if no one is around who can help me when i finally get my surgery?
Even daily life and work brings a barrage of questions:
- What happens when I have an eye inflammation on a major deadline or meeting?(this has happened)
- What if people stop wanting to work with me if it happens too much?
- Do I tell people that I work with that I have this?
- If I tell that I have this will they see me as “damaged goods” and not want to work with me?
- Do I try to get accommodations in an office setting? (this was when I still worked in an office, I work from home now, in part because of this issue)
- Will this be used against me if i bring it up?
- What if no one is around who can help me if I have a really bad inflammation and can’t see? (this has also happened A LOT)
Note the last questions on my two lists of fears are pretty similar. I think about this all the time mostly because I’ve had a couple of nightmare situations where I’ve been stuck in a situation where I’ve been partially and completely blinded with no one around to help me out, and lemme tell you, few things will make you feel as vulnerable as being stuck in a strange city or stressful situation where you can’t see anything and your eyeballs feel like there are flaming hot pokers beings shoved into them, and instead of people helping you see what”s in front of you at that moment, they want to have a conversation with you about WHY YOU CAN’T SEE.
But I get it, people don’t know I am having problems by just looking at me. For the most part, I can get around fairly well. I am not walking around with a cane. My eye problem is mostly invisible, except for on bad days. But that’s the frustration of it all. When I do have bad days, it sometimes feels like I’m overreacting, or whining, even though when I am going through it, it really does feel that bad.
So a lot of what I struggle with is knowing that life as i knew it has changed, probably forever, but the new normal isn’t stable enough for me to get used to it. I still live in fear of losing my livelihood, because i know I can’t operate as quickly or as precisely as I did pre-diagnosis. But I work in an especially fast-paced field (digital media) and I fear that I can no longer keep up.
On an up-note, I have learned a few beneficial things, the power of asking for help (which was very hard for me, a fiercely independent person), and the power of self care. I get no extra points by pushing myself beyond my limits and if I don’t speak up for myself, likely no one else will.
I’ve also been a lot more aware of the struggles of those of us with chronic and invisible medical conditions and disabilities. There are so many people who live and work with chronic illnesses, and there’s still so much shame around it, which is ridiculous. The narrative of illness embraced largely when someone has “overcome” their illness or is cured.
Many of us are never cured, and will live with our illness forever, but it doesn’t make us less of who we are. But even I had to come to terms with that;I am still coming to terms with it, and it’s difficult.
There’s a story that keeps circulating about an athlete, Steve Holcomb, that has the same issue i do. It so disrupted his life he suffered from depression and suicidal ideation. I have too. It’s rough. I spent a lot of time blaming myself for the things I couldn’t do anymore. I still struggle with it.
But the telling of his story has been so focused around the cure that “saved” him and made him “whole” again. Many people with KC still have to live with the stressors of daily care for the rest of their lives. The cornea transplant may be rejected, the corneal thinning may return, you may still have to wear the irritation-prone lenses, even after surgery. But since the focus is on his “cure” it keeps things light, it makes the story more inspirational, but mostly for the people are aren’t really going through this in the first place.
So for me, even though a lot of the time even I get sick of talking about my “stupid eye problem” every day, I do. Mostly because it’s my life every day and if you ask me “how I’m doing” well, this is a big part of it, and you’ll deal. But also because I see a lot more people with chronic medical conditions (Looking at Chronic Babe here) really making a point to not live in the shadows even as they are dealing with things. There’s this dichotomy about illness, a dangerous one that exists in our society where you are either 100% well or 100% “sick” and if you’re sick, then you stay out of view until you’re 100% well again, like that Olympian I mentioned earlier. And that’s bullshit. A lot of us aren’t 100% well, but we’re fine, and we’re living our lives as best as we can. And rather than living a false day to day life to make others feel better, we tackle it full on, knowing there will be good days, great days, bad days, and awful days, but through it all we are still ourselves. I am still me, and not defined by my keratoconus.