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.  I have a friend who is completely blind from RP and recently refinished his basement alongside his son, even handcrafting a beautiful wet bar, all without sight.  I’ve heard of auto mechanics who can no longer drive but still find ways to work on cars.  When someone has a talent or interest, they find  a way to continue doing it.

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.  From college students bonding over late night activities around campus to parents observing their kids’ soccer games, some of these experiences can feel a bit awkward for people losing their vision.  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.  We can’t dart from person to person at a party, spotting friends across the room.  Some of this is unavoidable, but friends and family who go out of their way in social settings can make a huge difference.  Even when we can’t spot you in public, we still appreciate being acknowledged and greeted.  For example.  I love it when a parent of someone in my daughter’s kindergarten class comes up to me in the grocery store and tells me who they are, even if I’ve met them before, and starts a conversation.  I can’t stand it when someone tells me, after the fact, that they were near me in a public setting, “Oh, I saw you at the movie theater last week,” but didn’t make their presence known at the time. It’s a weird feeling when people can spot you but you’re not able to see them.  It can leave you feeling self-conscious and awkward. When someone passes me and just says, “Hi Joy!” without identifying themselves, I sometimes spend the next 10 minutes trying to figure out who it was.  On the flip side, when someone says, “Hi Joy, it’s Lindsay!” I can ask how her daughter is or spout off a relevant comment, which is what people who are fully sighted do regularly in their social lives without even thinking about it.

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, like I have “selective sight”, but anyone who knows me well understands and doesn’t give it a second thought.  My younger sister, who works on a cruise ship, overheard one of her coworkers complaining about a passenger who had requested vision-related assistance but then appeared to be looking at something.  The co-worker assumed the person was lying about their poor eyesight, but my sister grew up watching her 2 older twin sisters struggle with vision loss and quickly told her co-worker that the passenger might need help seeing some things but not others.   Vision loss is not always a concrete, black-and-white picture for people losing their sight.  Take colors, for example, I can identify most colors in a general sense but often can’t distinguish between blue and green, red and orange, purple and brown, or even between yellow and white.

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.  Also similar to aging, most people don’t just wake up one day and realize that they’re a senior citizen….you realize that you’re aging at various points in your life, sometimes because of an event such as a milestone birthday, but other times you just notice yourself looking or feeling older from time to time.  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 2 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.  If there is someone in your life who you feel like should be using a mobility assistance but doesn’t, it’s usually a realization they need to come to on their own, something through a few bumps, bruises and embarrassing moments.  No one can be persuaded through guilt or fear to get assistance.  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!  It’s so sad, and we almost cried during her talk!”  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, especially the one that society places the most importance on, 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. (i.e. On a recent trip to Chicago, I reached out to press the crosswalk signal button and began pressing on a man’s arm instead, much to his surprise.  You can’t tell me that’s not laugh-out-loud funny!)  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. “

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24 thoughts on “8 Things I Wish People Knew About Going Blind from a Degenerative Eye Condition

  1. So beautifully written! I wish everyone I knew could understand blindness in the way you’ve just described. I think I struggle a lot with the issue of strangers not understanding that not all blindness means completely blind. I’ve actually been confronted by people at airports who question my need for priority boarding, etc..
    I love the work that you’re doing Joy to increase understanding, and you are a wonderful voice for those of us with impaired vision.

  2. Thank you, Joy…you speak so eloquently in every blog article. You are a valuable voice for many people. The way you explain your experiences is positive, not admonishing those who are not educated about low vision people. You are also a fabulous spokesperson for Guide Dogs for the Blind! All of us puppy raisers hope our dogs are going to be that gift of freedom for people like you!!
    The picture of you and your twin looks like it is on the covered bridge in Vail, CO. If you are ever out this way, I would love to hike/snowshoe with you.

    • Thanks Kathy! I would LOVE that…CO is such a beautiful state! One of these days Roja and I will make it out there. Thank you for all you do as a puppy raiser…many of us wouldn’t have the freedoms we get to experience without raisers like you out there!

    • Ha! He kind of walked away sheepishly! At least I had a guide dog with me so that he didn’t think I was just some crazy person!

  3. This is such a well written and informative post Joy. Thank you for putting into words the way I feel and have felt for some time since losing my vision. I’ve been thinking a lot lately about why people are confused about vision loss and I think you’ve covered a lot of territory here. Part of the issue, I believe, is the definition of blindness and our expectations of what it means to be blind. I grew up in an era when the word “blind” meant being totally in the dark. Terms like “low vision” “partially sighted”, etc. did not exist and there was no real conversation around people who had such poor vision that it impacted their day to day life. It’s so refreshing to come across people who are providing the education/awareness that is so badly needed.

    • Thanks Stephanie! I’m glad that my verbiage resonates with you. I know that everyone has their own opinions and ideas on blindness, vision loss, etc. so I really didn’t want to speak on behalf of all people losing sight, but I’m really glad that a number of people are finding the language I used helpful. Some are using it as a tool to share with their friends and families since it describes what they were thinking but couldn’t put into words, and that makes me happy!

  4. Reminds me of the first day I used my white cane at work (large call center over 800 employees) I had just started training at 20° as I “hit the legal mark” and was tired of big bumps on my legs & forehead. For a month people came up to me asking what happened? And all of the other “can you still see” questions. Being a “sighted blind person” oh the joys.

  5. I have 2 friends and a mother in law that are legally blind from degenerative eye diseases and am learning how to relate and help and understand. This was awesome. Thanks for your openness.

  6. Hallelujah! I am 1 week new to this, yet in this week I have found out so much! My initial fear, dread and despair has been replaced with a new joy and even excitement to new avenues and friends.
    Thank you for posting this. I can’t wait to share it with friends and family. Plus I will make sure to identify myself when approaching others. I may very well have been guilty on a few occasions of being a quick hit and run person, not identifying my self, or giving the opportunity to others to respond. No more!
    Looking forward to learning and doing so much more! Thank you!

    • Ha! I’m are we’ve all done this before! I am SO glad your world is opening up….your zeal for life is contagious!!!

  7. Thank you so much for this post. I definitely get the feeling at times that people don’t see how I can be losing my vision like I say I am because, at least in some ways, I’m still pretty functional. They don’t see my struggles at home to do simple things like pour a cup of coffee without spilling it all over the counter because I can’t see when the cup is full or try to figure out what color an item of clothing actually is (black? brown? dark blue?). I live in fear that I will walk by somebody I know without acknowledging them simply because I can’t recognize them and they will think I’m being rude. Like Ann, I wish people understood vision loss better. However, I will now will be able to point them to your post as a great way to educate them on what living with degenerative vision loss is like.

    • Yes, it’s all those little things that can really add up to a lot of stress. I had a vision rehab counselor give me all these little tools/devices for around the house (i.e. an electronic color reader and a thing to put on mugs that beeps when water touches it), but honestly half the time I can’t find the devices or they don’t work, so I’m finding it’s easier just to come up with my own techniques, as I’m sure you are. It is hard to explain to people, and I’m glad that our experiences are similar enough that you can point them to this. I, too, do not like being mistaken for rude…my dog helps with this, but I sometimes still feel like carrying a sign that says, “If I fail to wave or say hi, please feel free to make your presence known very loudly!”

  8. While I do not have any of the eye diseases you spoke of, I do have Optic Neuritis. I have been blind (visually impaired) for two and a half years. Don’t get me wrong, I did go through a time when I was depressed, angry, and and overall pissed of, but if course it got me no where (I went blind in two weeks). It wasn’t until I could do one of two things: I could either check out, or start living again. Thankfully with the help of God and my amazing family, I decided to make the best of it. At the ripe age of 47, I decided to go back to college. I am proud to announce that at the age of 49, in May of 2016, I will be graduating with honors with my Associates degree. I will then be moving on to graduate school. My major is Psychology, and I’m trying to get my minor in Forensics. I dont know yet where this journey will take me, but I think God does.
    I used to regret going blind in the beginning, until I sat up and realized how much “living” I had lost out on. Now, I can honestly say that I don’t regret going blind because it has helped me to never take a day for granted. The world is such a colorful and amazing place to be and I relish every day I can see, if just a little. I enjoy people more too, and am sad when people try to avoid me… I am also thankful to Guide Dogs for the Blind for giving me Charlie in June of 2015. Now, if they only had the self driving cars, I can and will be totally independent!

  9. Thank you for this insightful article! We have almost eleven year old twin girls losing their vision and this article gave us a lot of insight into what they experience. You discussed things I never would’ve thought of that explain a lot. It means so much to us to try to understand the world as our girls see it and to empower them. Thank you!

    • Hi Vickie, and oh my gosh… other identical twins with RP? What are the odds? (seriously, I wonder what the odds are statistically….low, I’d imagine!) I am SO happy you found our blog, and I really hope it’s helpful to you, your girls and your family. I know we can’t speak for all people w/ RP and that everyone’s experiences growing up with something is different, but in talking to others, there do seem to be some common threads. I think that is an EXCELLENT goal as parents….. with that kind of outlook, nothing will stand in your girls’ way. If they ever want anyone to talk with as they get older, please feel free to contact us! Joy 🙂

    • Goosebumps from your comment for sure, Vickie! You and your girls are the main reason we write this blog, so it is music to our ears to hear that it has been helpful to you and your husband in better understanding your girls’ worlds.

      • Thank you both! I actually sat down with the girls today and read them part of this article. We discussed the parts that really enlightened me regarding current issues (#3 & #5) it really helped open up the line of communication. When I told them I read a blog written by a set of identical twins with low vision they looked at each other like “What?” They thought that was pretty cool.
        We will definitely be following you ladies and looking forward to more of your well written, informative articles! Thank you for sharing your thoughts and experiences!!

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