I’ve always disparaged people who uttered clichés like “you don’t know what you have until it’s gone.”
But of course, clichés are what they are because they bear an unequivocal truth. I’d learn this the hard way.
In 2007, I went to the optometrist for a routine check-up. Before that I’ve worn glasses because it was initially assumed that I was short-sighted. Turns out, that being short-sighted would have been the best option. What I was diagnosed with was keratoconus – a condition which changes the shape of the cornea and causes it to become thinner.
What happens is that the normal shape of the cornea bulges outwards and causes progressive image distortion, blurriness and near-sightedness. In some cases, it can lead to blindness.
I have it in both of my eyes, although my left eye is much worse than my right one. I come from a family where eye problems are somewhat of a hereditary trait, but I never thought I’d be the one to be saddled with this.
While there is no known cure for my condition, there are treatments that can help; the nature of those treatments dependant on the severity of the keratoconus.
It took me a while (approximately 7 years) before I started getting proper treatment for it. The reason for this is that I had to switch between soft, gel contact lenses and hard contact lenses (both of which are rather pricey and which the medical aid I’m on doesn’t fully cover).
I also had to undergo a Cornea Cross-Linking procedure. At that time it was still considered part of a clinical trial, so medical aid, once again, didn’t cover the full amount.
The treatments I received certainly aid me for the most part, but they are nothing in comparison to having 20/20 vision. Without my hard contact lenses, everything in front of me is just a blur. My eyes are extremely sensitive to light and my eyes struggle to form concrete images without aid.
Here’s the thing though – you’d never know I was visually disabled by looking at me.
While I know certain eye diseases can affect appearances, I have been fortunate enough that there hasn’t been anything pronounced in my appearance. Because I don’t look disabled (and there is absolutely nothing wrong with you if you have a visible physical disability), people often assume that I don’t struggle.
You don’t look sick so you must be able to cope, right? That’s generally the consensus I tend to get from people.
What people don’t realise though is that working when you have an invisible disability comes with its own set of challenges.
Those challenges are as follows:
1. I’m slower than other folk when it comes to getting work done.
This is the biggest nightmare I have to deal with. Because I work in an environment where I need to be in front of a computer the whole day, my eyes take a tremendous amount of strain. I’m supposed to take regular breaks, but try not to because I need to get work done.
My colleagues are lovely and actively encourage me to take breaks, but the guilt that I’m ill-equipped to deal with getting more done is something that never goes away. Still, I aim to keep trying every day, and at least, the eye drops I use, do provide some relief.
2. People tend to forget you have a disability when they can’t see it.
This is a bit of a double-edged sword for me, because on the one hand, I don’t want to be treated as if I’m an anomaly, but on the other hand, it becomes a little tiresome when you constantly have to explain to people just why you’re squinting through what little vision you have.
Also, people don’t tend to take your disability seriously when they can’t see it. I’ve had a number of people just automatically assume that I could function in places filled with bright light and read through small print. People would say ‘just put on sunglasses’ but it’s not a solution.
While they help, and while I do wear it as often as possible, it’s not a full-proof solution when it comes to an eye disease that tends to be regressive.
Also, the last thing I want is to be told by a fully-abled person how I should or shouldn’t deal with my disability, since I can pretty much guarantee that I know more about my condition than what they do.
3. I constantly worry that people think I’m looking for sympathy when I’m in pain.
The thing about having a disability of any kind is that I’m always worried that people think I’m using my poor vision as an excuse or as a means to gain sympathy.
On bad days, it often feels like my eyes are out to get me, because no matter how much I try to focus on the screen in front of me, my lenses won’t co-operate (the hard contact lenses sometimes cause my eyes to become extremely dry), my eyes tear and become inflamed.
Those are the days that I try my best to overcompensate because I believe that my eye condition is my fault. Which, I know it’s not, but tell that to the part of my brain that chooses to believe the worst.
I’ll go on to add that I know in the scheme of things I am very lucky. In comparison to many, my disability doesn’t seem that severe and I know that there are people who are in far more difficult positions than I am.
That said, it does not mean that people with “invisible” disabilities don’t have struggles. We just carry them differently.
Are you differently-abled and able to work? What have your experiences been like? Share your stories with us and we may publish it in a future article (you may choose to be anonymous, if you’d prefer)
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