8 Things I Wish People Knew About Going Blind From a Degenerative Eye Condition

Today’s blog is from Joy Thomas of Double Vision Blog. Joy and Jenelle are identical twin sisters with retinitis pigmentosa (RP) who hope to share their perspectives, experiences, and challenges with vision loss.

8 Things I Wish People Knew About Going Blind From a Degenerative Eye Condition

  1. It usually occurs slowly. While there are some people who go blind overnight or in a matter of days, such as with detached retinas, following eye surgeries, or with certain types of glaucoma, the vast majority of people with degenerative diseases such as retinitis pigmentosa and macular degeneration, lose their sight gradually, over a period of many years.

  2. Just because our vision changes doesn’t mean our interests do. Some people assume that certain hobbies that are sight-related, such as sports, fashion, makeup, woodworking, etc. are no longer interesting or feasible after vision loss. This simply isn’t true. There’s nothing worse than a group of friends assuming that you no longer want to go on your annual bike-riding trip, aren’t interested in watching a football game together, or don’t enjoy shopping with them anymore. Yes, some things may change, such as needing to use a tandem bicycle or a tether for running side-by-side or audio descriptions for movies, but these activities can still be very fun. There are always ways to compensate and adapt when it comes to the activities we love.

  3. It can feel socially isolating. Think of all the social interactions that you use your vision for, from greeting your neighbor across the way to commenting on someone’s clothing. While we can still participate in many of the same activities, some of the commentary involved in a shared visual experience is missed. Sometimes we feel like we have to fake "ooh-ing" and "aw-ing" over that cute or funny scene everyone is pointing at, lest we feel out of the loop. Some of this is unavoidable, but friends and family who go out of their way in social settings can make a huge difference.

  4. The things we can and cannot see are sometimes confusing, even for us. I can’t always explain why I can’t figure out what a picture that someone texts me is of but can read the print caption that goes along with the photo. Perhaps it has something to do with visual memory of letters and how my brain fills in the gaps, even when parts of those letters are missing. Or maybe it’s the contrast or the size and color of the photo that makes a difference. Whatever it is, it can be difficult to explain to people and could even appear phony. Vision loss is not always a concrete, black-and-white picture for people losing their sight.

  5. We can have "bad" and "good" vision days. Sometimes it depends on how sunny or cloudy it is outside. Other times it depends on eye strain, the time of day, lighting inside vs. outside, and even how many trees or landscaping are around casting shadows, causing my eyes to play lots and lots of tricks on me.

  6. It’s not something most of us dwell on daily. Gradual degeneration is a lot like aging. You don’t look in the mirror every single day, inspecting every new wrinkle, exclaiming, "I’m getting older!" just like I don’t stare at eye charts constantly, noticing every little change. Typically, vision loss is similar. There are times I’ve gone to the eye doctor and been surprised at my change in vision because I hadn’t noticed it happening to the extent that it dropped, despite the fact that I could tell it was worsening. Other times, I notice the drop and am not surprised in the least when the Ophthalmologist shows me my test results.

  7. Some of us use mobility aids like canes and dogs and some of us don’t. There are people who have the exact same vision who move about the world completely differently. There can be two people who both have 19 degrees of vision, deeming them both "legally" blind, and one of them uses a white cane while the other walks around without any mobility tool. Even among those who are completely blind, not everyone uses a cane or dog. Some, for example, use echolocation. It’s a personal preference. A common misconception when someone begins using a cane is that they just had a major drop in their vision. Sometimes this is the case, but many times the person is just sick of tripping over things and is ready for some help.

  8. Most of us lead regular, happy lives. After doing a presentation about my vision at my niece’s school recently, a couple of her classmates came up to her at recess and said, "We feel so bad for your aunt!" Hearing this made me feel like I didn’t really do a great job conveying how much I love my life during my presentation. It made me decide to start my school presentations by telling the kids to smile and laugh because my story is not a sad one. Yes, I have dealt with my share of sadness over having RP. No one likes the idea of losing one of the 5 senses, but sadness is definitely not the word that comes up for me when thinking about my life. Challenge? Sure. Adventure? Yep. Fringe benefits? Yes please. Joy? Absolutely.

When you’re done crying over RP, there are so many things to laugh at. While studies show that people who are blind or visually impaired do tend to have more nightmares, due to anxieties that sighted people don’t face, apparently these added anxieties do not have bearing on a happy, fulfilling life, as happiness studies find that blind people are just as happy as sighted folks. Helen Keller sums this up best, "I can see, and that is why I can be happy, in what you call the dark, but which to me is golden."

This blog post was originally published on Double Vision Blog.

About Joy Thomas

Joy looking at the camera in a pink shirt and turquoise necklace standing outside

Joy Thomas is a storyteller at heart and loves exploring the world around her. A recent new adventure led Joy from the Chicagoland area to Southern California, where she lives with her bearded musician husband, 2 young daughters and guide dog, Roja. With a background in social work and teaching, Joy loves sharing her passion for creativity and wholeness, and currently teaches literacy and writing courses to children of all ages. In additional to teaching, She is a freelance writer and speaker.

During her coveted free time, Joy is an avid reader and loves memoirs and satirical pieces and most anything by Elisabeth Gilbert. With her family, she loves paddle boarding, biking, and relaxing at the beach. While doing dishes Joy enjoy listening to podcasts. When she wakes up early enough, she practices yoga and occasionally walks the long, arduous block to the workout center to use the elliptical.

Joy was diagnosed with retinitis pigmentosa when she was five years old and has been legally blind as long as she can remember.