How to Respond to Questions About Your Eyes

by Anna Rojakovick

When I was younger, I used to hate my nystagmus. Of all, my least favorite question was “Why are your eyes moving?”. Immediately, ten different answers entered my mind and I panicked. As I got older and more involved in the American Nystagmus Network, I developed a love for my condition. This also meant that I knew how to respond to the dreaded questions about my eyes from others. For me, there are two main answers I will give to curious people.

Firstly, if my friends, families or classmates are asking, I give them more information in my response. This is because I will likely see them again, so I want them to have a stronger understanding of nystagmus in general, and how it affects me in particular. My answer will usually include why my eyes are moving, it is perfectly normal, I have had it all my life, and that my brother has it as well. Usually, people will also ask more questions after this, and I fully welcome that! I love getting to talk about nystagmus because it is what makes me, me!

Secondly, if the person asking about the movement of my eyes is a stranger, or someone I likely will not see again, I give them a much briefer explanation. I will tell them that it is simply a medical condition called nystagmus, which causes uncontrollable and constant eye movements. Honestly, from what I have found is that when a stranger is asking (or anyone in general) it is because they want to make sure I am okay. 

Answering “Why are your eyes shaking” can look different for everyone, especially given the situation. Yet, I have found that preparing and knowing how I want to answer the questions has led to me being much more comfortable talking about nystagmus!