"Yellow Pants" - Our Rare Diseases Are Something We Wear Every Day
February 29, 2024 - by Jennifer Ringler, MS
“Being blind in one eye is like walking around in shiny yellow leather pants that you can’t take off. Every day. Forever.” This is how I once explained the constant fish-out-of-water feeling that comes from being the only person in the room (in most rooms throughout my life) with a rare disorder or a disability.
You know you’re wearing yellow pants, everyone else knows you’re wearing yellow pants, and you know they all probably have silent opinions and thoughts and biases about you because of your yellow pants – even though they’ve never met you and your yellow pants are one tiny, insignificant aspect of who you are. You wonder if you’ll be treated differently because of your yellow pants, so you work harder than most to prove yourself while simultaneously trying to blend in and “pass” for normal. But ultimately, there’s not much you can do except live your life in your yellow pants.
It’s hard not to feel trite when making a post about Rare Disease Day – something so many companies in the pharma and biotech industry do. Another box to check, another awareness day on the calendar, another post on social media. You’ll probably see 100 of these today. So instead of bombarding you with stats and facts about rare disease prevalence and mortality rates (which are alarming) or shouting that rare disease patients deserve more treatments and better care (which they do), I’ll try to share a little bit about my personal experience as someone with a rare disorder.
I was born with optic nerve hypoplasia (ONH), a rare, congenital disorder characterized by the under-development of the optic nerve – which in my case means I am completely blind in one eye and have poor vision in the other. I carry a host of memories from throughout my life (all 41 years and counting) that are related to my rare disorder, from difficult moments getting the accommodations I needed in elementary school to bullying in high school to workplace discrimination. My ONH is my yellow pair of pants. It’s with me every day – when I’m working, out with my friends, navigating an unfamiliar airport or train station alone, having a Zoom meeting with a new client (“Can you zoom in on that, please?”), reading a menu with tiny print in a poorly lit restaurant, or asking my husband to read me the subtitles on Game of Thrones.
I never leave my yellow pants at home.
And while I’ve been aware that I’m almost always the only person in the room wearing yellow pants since I became aware of myself in the world, I didn’t really understand the medical facts about my disorder until high school. The summer before my senior year, I attended a four-week, onsite vocational life skills and training program for the blind and visually impaired through the Joseph Kohn Training Center in New Brunswick, New Jersey. The purpose of the program was to prepare visually impaired young adults to navigate college or the working world after high school.
So many of us were raised (by well-meaning, loving parents) in such a sheltered way that we didn’t know basic life skills. I remember the program taught us skills like how to cook (eggs, grilled cheese, baked potatoes), take a city bus, use a washer and dryer, and more. Tasks that, while second nature to people who had been taught them gradually over the years and who had enough vision to perform them with ease, pose extra challenges to people with little or no vision.
It was at this training program that I first researched and fully understood ONH. Our “capstone” assignment for the program was to research and write a paper on our individual disability/vision condition. And so I learned that ONH sometimes also involves problems with brain structure and function (mine does not) and sometimes affects the pituitary gland (which is how I learned that my being 4’11” and my being visually impaired may or may not be related). I learned about what the optic nerve does and how it works. And I learned the difference between a disease (a medical condition with an identifiable cause) and a disorder (a group of symptoms that disrupts your normal body functions but does not have a known cause).
And while I had never previously felt I needed to know the science and mechanics behind my yellow pants – it was all I could do just to navigate the world around me in them – I’m grateful now that I have this knowledge. I didn’t know back then that I would end up communicating about medical conditions and treatments for a living, but having a concrete understanding of my yellow pants somehow made me feel less different, or at least less uncomfortable about my difference.
These days, I’ve accepted that my yellow pants are part of who I am, and I speak up proudly and assertively about them. I may not have chosen to put on yellow pants and walk out the door in them every day – but I can choose not to spend my life trying to be invisible.
And hey, I have my own page on NORD.