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Blind and Visually Impaired Community

Full History - 2018 - 07 - 31 - ID#93ep2t
5
How did you tell your friends and family you were going blind? (self.Blind)
submitted by thisjannnnuary
I'm 25 and I got diagnosed with a retinal dystrophy ~2 years ago (not sure about the exact disease but I think it's Ushers). My sight is fine in the day, but at night and in dark places it is pretty crap. It's definitely deteriorating as I do notice my sight worsening. My family do know about it. My problem (or at least one of problems) is that I haven't told my friends about my newly discovered disease. I haven't told them because I wanted to come to terms with it first before I tell them but I'm also afraid to tell them. Maybe it's a fear of pity or that they won't treat me the same after they find out. However, I do feel I'm constantly having to lie to them when they ask me stuff like what I'm going to do in the future or when will I learn to drive etc. This makes me feel super guilty especially because some of my friends are so honest that it makes me feel like a phony just to be around them. I guess another fear will be that they will be angry about not telling them before about it but I guess that's more of an irrational fear.

My fear of pity stems from the disability that I already have, my hearing loss (hence, usher). When I was younger, I use to have big clunky hearing aids that were fairly visible and I definitely got treated differently compared to other kids because of this but since I got better, hidden hearing aids, I did notice people treated me with more respect and with less patronisation. I feel like that my newer hearing aids turned a visible disability into an invisible one. However, this could have been from having maturer friends and living in a more understanding society than that of the one I grew up in in my younger years. Despite this, I'm afraid of being placed in a box again like I did before if I reveal my new, super fun disease.

I guess I'm looking for other people's advice on this issue and those who have gone through the same things I have.
blindnessandbees 5 points 5y ago
I totally feel you! I have retinitis pigmentosa, which is the same eye condition someone with ushers has, expect you don’t have hearing loss (I actually was misdiagnosed with Ushers at some point... yikes). I started losing vision two years ago too and this was during a period where I had to drop out of school because of other conditions (chronic fatigue that got real bad) and honestly I felt really bad being that one kid that is always sick or is always going through a hard time. But I kinda forced myself to be open with the people around me I guess. People rarely understand fully. But as your sight gets worse it’s gonna be so important that people know. It’s not easy but you will find the words to explain yourself to people. For me it’s always just been very to the point (yeah I have an eye condition which means my cone and rod cells degenerate, causing me to go blind sooner or later)

Best of luck!
ryddyt 4 points 5y ago
Do not lie about it. My dad has used this strategy all his life and is a lonely, miserable, self-centered, broken person now. You just gotta be open about it. Ask for help when you need it. Get orientation training. Listen to podcasts and read books about other people's experiences and get comfortable and confident with your disability. Try committing to telling just one person, or doing one training session, or listening to one podcast episode. Getting started is 80% of the battle. Just get the ball rolling.
themadmountainman 2 points 5y ago
Do you have a recommended podcast on the subject?
ryddyt 2 points 5y ago
Life After Sight Loss and Life After Blindness are two that I've listened to sporadically. Pretty good as far as picking up knowledge on some of the technology out there, strategies for accomodating lifestyles, etc.
ENTJ351 1 points 4y ago
Just tell them. If they do not except you because of it, well they are not worth your friendship right? You can't help going blind. It's not a choice.
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