My experiences with low vision and chronic illness have made my life much more interesting.
Unlike most people my age, I have no clue about how to do these things:
- Drive a car
- Read a library book without a video magnifier
- Walk backwards
- Find a classroom on the first try
However, there are many other interesting things that I know how to do:
- Explain life with Chiari Malformation and low vision
- Talk for hours on why accessibility in technology is important
- Advocate for others with disabilities
I am always grateful to have friends that have the same condition as me, or a similar condition, as these friendships are so important in going through life with a chronic illness. Here are five of the reasons I love having friends with the same condition as me.
- Explaining Chiari Malformation in Seven Words or Less
- Having an Undiagnosed Chronic Illness in High School
- Digital Library Resources For Vision Impaired Patrons
No need to explain
The mom of one of my visually impaired friends told me how much she appreciated that my friend knew me, someone who is also visually impaired, because there was no need to explain certain things. She elaborated by telling me how my friend doesn’t have to explain why they can’t see something, worry about being in a dangerous situation, or feeling left out because of their impairment. I just get it. This thought stuck with me, as it is so true- my friends with my same condition do understand things, no explanation necessary.
Sharing what works
My friends and I will often send products and resources back and forth to each other, and also share experiences we’ve had with these things. One of my friends who is also studying assistive technology will frequently send me cool links to products or other great information about our condition or similar conditions.
Ever sneezed so much you’ve given yourself a migraine and had to go lie down for several hours? Not many people have, but that can happen with Chiari Malformation. My fellow friends with Chiari relate to this experience well, and we also share many other common experiences with our condition that not many others can relate to.
They understand my rants
I consider lightning to be nature’s strobe lights, and it is a migraine trigger for me. I can rant about this to my other friends with photosensitivity and they will completely understand, and even agree with me.
Late night chats
Chronic pain means you can be awake at random hours of the night, and have difficulty sleeping. This means that my friends and I are frequently messaging while everyone else is asleep, because we have similar triggers.
I didn’t meet anyone with the same condition as me until I got to college, because Chiari Malformation only affects one in one thousand people, which meant that I was the only person in my high school with my condition. In addition, vision impairment makes up only 1.2% of IEPs. But once I got to college, I was able to meet so many people that had the same condition that I do, and feel a sense of belonging. I am so lucky to have met these wonderful people, and hope that others can find friends that are just as lovely as mine.