Glasses as a Form of Unique Expression With Rare Disease

Last week, I made the familiar journey from optometrist to optician, getting a new glasses prescription and ordering new frames. I have done this many times but always get excited by the process.

While so many doctor visits and medical tests can be stressful or challenging when you live with a rare disease that many people and medical professionals do not understand, choosing new glasses has always filled me with excitement.

Wearing glasses as a child

I remember the epic waits in my childhood eye doctor's office; he was a specialist and always ran late! I remember switching from the pictures to the letters on the eye chart. That was a big deal for a bookworm like me. I remember all the opticians who helped me find my glasses style and refine it as styles and preferences changed.

I don't remember a time before I wore glasses. I started wearing sunglasses as soon as they found some small enough. At the time, baby glasses were not yet popular, and I took off the ones they tried to have me wear to correct my eye condition, which might not have worked. Because my rare disease makes me extremely sensitive to bright sunlight, I started wearing prescription glasses full-time in early elementary school.

Glasses are a form of expression

For me, glasses were and continue to be, a fun part of my life with a rare disease that affects my eyes.

Style and creativity

Glasses are a way to transform my style! I love fashion and accessories and changing glasses every so often allows me to explore different sides of myself and my self-expression. This year, I changed my frame shape and color from metal to plastic.

Glasses are a way to be creative. It shows a part of myself to others, and as someone with a facial difference it shows pride in the way my face looks. Sometimes, I question myself and my appearance, and putting on a pair of amazing frames just helps. It shows the world that I am not afraid to wear something even with a facial difference.

Shared experiences

Glasses are a sign of a shared health condition. It's amazing the stories we all share about glasses and our journeys, favorites, and disasters (yes, I once broke mine in two after getting hit in the head with a basketball). So many of our experiences with disabilities and health conditions are so unique that it's nice that glasses give us a common point of understanding.

Measuring time

And lastly, glasses are a way to measure time and progress. I remember what I was doing, dealing with and navigating, by the glasses I wore. "These were the ones that almost fell off during that competition!" or "These were the ones I wore to that conference" - they measure time uniquely, in a visceral way.

So as I wait for my new frames to arrive, I eagerly anticipate what adventures I will have wearing them.