April 20th, 2023

Achromatopsia 

Photo by Utkarxh Rathore from Unsplash.

I was born with an eye condition called Achromatopsia. Achromatopsia causes a loss of visual acuity, light sensitivity, and partial or total color blindness. It is non-progressive, and currently has no cure, though there are clinical trials with gene therapy taking place. Achromatopsia affects me in a lot of ways, primarily in that I can’t drive. I live in the suburbs where driving is the main form of transportation. Thankfully, I have family, friends, and a boyfriend who help me out with transportation. There’s also apps like Uber I can use. Not being able to drive, though, has affected my mental health throughout my life.

In high school, it was hard watching my peers receive their drivers licenses, and the joy and freedom that elicited. I always wanted to be like everyone else in this way. I wanted to be independent, and have freedom to come and go as I please. The notion of being able to jump in your car whenever you want is a privilege many people take for granted. When that privilege is stripped away, you’re left feeling trapped.

As a kid, I also struggled with accepting my condition. I tried to pretend it wasn’t there. I’ll always remember when I got the chance to get an American Girl doll that looked like me. When my mom asked if we should get the doll glasses, I adamantly said no. I wanted her to look normal, was the thought running through my head.

I didn’t want anything that would mark me as different. In school, I fought against using tools that would help me like magnifiers and large print books, which at the time, were very large books physically as well as the print. School was a struggle because of this, and a lack of accommodation by teachers, as well as a lack of acceptance by peers. In middle school, specifically gym class, I was bullied over my eye condition. Teachers would make assumptions about my academic capabilities based off my disability.

In college, though, things got better. Professors accommodated me no problem. People were more open and accepting. My vision even had rewards like a scholarship. I slowly began to make some steps in accepting my condition. However, it hasn’t been until recently I can say I’ve fully accepted it.

That doesn’t mean it isn’t challenging physically and mentally. I have to make a mindful choice to accept my condition each day. And I do. I want to stop feeling shame about something that is a part of me like my hair color and personality. I hope there is a cure one day, but for now, I’m going to try to live the best life I can with the vision I have. I joined an online support group, and met an inspiring friend with the same condition. I’ve been more open with people in my life about my condition, what it means, and what I need from others to help me navigate the world. My vision doesn’t have to be this curse I was born with. It’s simply a condition I have that I can work with, and live a happy and fulfilling life with.

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