Blind and Visually Impaired Community
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How do you cope with going blind? (self.Blind)
submitted by SmokingOctopus
Sorry if this is rule breaking or triggering but I'm having a very tough time of late about my worsening vision. How do you guys cope with it? It's just so bleak :(
505Griffon 14 points 2y ago
I try to put it into perspective. It could be so much worse. I do the best I can do daily and am happy for that.
I don't dwell on what's lost or the future. I could die in my sleep tonight so why waste the time on things that may not happen.
Try to stay positive and be willing to adapt to trying things differently.
I don't dwell on what's lost or the future. I could die in my sleep tonight so why waste the time on things that may not happen.
Try to stay positive and be willing to adapt to trying things differently.
SmokingOctopus [OP] 2 points 2y ago
They're wise words
SmokingOctopus [OP] 1 points 2y ago
Thanks
musical-toot 13 points 2y ago
I think its normal to have a period of mourning for what you have lost, but you shouldn't dwell on those feelings too much, or allow them to become all-encompassing. Focusing on things you can't do is only going to make you feel bad.
When you get into that headspace it is easy to forget just how much good there still is in life. For every one thing that you might not be able to do because of your vision, there are 50 other experiences that you still can do that are completely unexplored. The world is vast, and our lives are short; vision loss is not enough to make you run out of good in this world. In other words, try to focus your mind on things that you already love in life, or things that you want to do and still can.
I know that it is easier said than done, but this kind of thinking is a skill that can be trained and learned. A good way to start doing this is to just be aware of the negative thoughts. You might get involuntary thoughts about things that you can't do. When this happens, just catch yourself and think of something you still love to do. When I do this, I find that the negative thoughts happen less and less frequently just because I'm aware of them.
It's a lot like training yourself to stop using the words "like" and "um", or training yourself to stop cursing if you find curse words slipping out at inappropriate times. These words might pop up involuntarily at first, but if you catch yourself every time it happens, it will become less frequent.
And also, it might help to see a low vision specialist or get O&M training depending on your situation. If you learn skills to help you out in every day life, that should also give you more confidence.
When you get into that headspace it is easy to forget just how much good there still is in life. For every one thing that you might not be able to do because of your vision, there are 50 other experiences that you still can do that are completely unexplored. The world is vast, and our lives are short; vision loss is not enough to make you run out of good in this world. In other words, try to focus your mind on things that you already love in life, or things that you want to do and still can.
I know that it is easier said than done, but this kind of thinking is a skill that can be trained and learned. A good way to start doing this is to just be aware of the negative thoughts. You might get involuntary thoughts about things that you can't do. When this happens, just catch yourself and think of something you still love to do. When I do this, I find that the negative thoughts happen less and less frequently just because I'm aware of them.
It's a lot like training yourself to stop using the words "like" and "um", or training yourself to stop cursing if you find curse words slipping out at inappropriate times. These words might pop up involuntarily at first, but if you catch yourself every time it happens, it will become less frequent.
And also, it might help to see a low vision specialist or get O&M training depending on your situation. If you learn skills to help you out in every day life, that should also give you more confidence.
Namrakk 3 points 2y ago
Your post struck a part of me. Do you mind if I ask your level of vision? I found concentrating on positive thoughts helpful, but much more difficult as vision gets increasingly worse and the more basic things become harder to do.
musical-toot 5 points 2y ago
Yeah, I have RP. I still have good enough central vision to be able to read, but my field of vision is very small. I do not know the exact amount since it has been years since my last test and I know it has gotten worse. In the night, and even in dimly lit rooms, I have little to no useful vision. My vision loss has been a cycle of rapid vision loss, followed by a period of stability, followed by rapid vision loss again (I am currently in a stage of vision loss). And I am actually in the process of learning how to use a white cane because I keep injuring myself when traveling.
With that said, I do recognize that many people have it much worse than me, and that my advice might not work for everyone. I am still able to work for example (I am a software engineer), whereas many other people have trouble getting work with their visual impairments. At the end of the day, I know that no amount of positive thinking is going to get you a job and pay your bills, so my advice can only get you so far. It is important to also take action to try to improve your life circumstances by getting mobility training or learning the necessary skills to find a job that can sustain you.
At the end of the day I think those two things combined are important. If you have a poor attitude in life, then you will be miserable even if your life conditions are otherwise great. Likewise, if you have a good attitude but don't take actions to improve the tangible outcomes of your life, then those outcomes won't improve. The two need to go hand in hand. The positive mindset handles that things that I can not control, like not being able to drive a car. The physical actions taken handle the things that I can control, like getting white cane training so I stop hurting myself. This has just been my personal experience, and I hope others find it helpful.
With that said, I do recognize that many people have it much worse than me, and that my advice might not work for everyone. I am still able to work for example (I am a software engineer), whereas many other people have trouble getting work with their visual impairments. At the end of the day, I know that no amount of positive thinking is going to get you a job and pay your bills, so my advice can only get you so far. It is important to also take action to try to improve your life circumstances by getting mobility training or learning the necessary skills to find a job that can sustain you.
At the end of the day I think those two things combined are important. If you have a poor attitude in life, then you will be miserable even if your life conditions are otherwise great. Likewise, if you have a good attitude but don't take actions to improve the tangible outcomes of your life, then those outcomes won't improve. The two need to go hand in hand. The positive mindset handles that things that I can not control, like not being able to drive a car. The physical actions taken handle the things that I can control, like getting white cane training so I stop hurting myself. This has just been my personal experience, and I hope others find it helpful.
DrillInstructorJan 13 points 2y ago
I'm going to put this in simple terms so it doesn't become an essay, so bear that in mind, but this is how it works if you go blind really really fast. This likely won't happen to you, but this is a worst case scenario for anyone else.
First you figure out how to do basic stuff, like going places and meeting people. This proves you can. It's a pain, but you keep doing it, to the point where it's boring. At some point, you realise that you were concentrating on where you were going and why, and what you were saying to the people you met, and you didn't really think about the mechanics of doing it.
The first few times that maybe lasts an hour. Then it lasts a morning, then most of a day, and eventually you find yourself just crashing on the couch on a friday evening thinking phew, what a week, man it'd be easier if I had great eyesight, and you realise you didn't think about it since the previous friday, and that's something you can live with.
You don't have to like it, nobody's going to like it, you just have to find a way of not liking it you can live with. That's how it works for me.
First you figure out how to do basic stuff, like going places and meeting people. This proves you can. It's a pain, but you keep doing it, to the point where it's boring. At some point, you realise that you were concentrating on where you were going and why, and what you were saying to the people you met, and you didn't really think about the mechanics of doing it.
The first few times that maybe lasts an hour. Then it lasts a morning, then most of a day, and eventually you find yourself just crashing on the couch on a friday evening thinking phew, what a week, man it'd be easier if I had great eyesight, and you realise you didn't think about it since the previous friday, and that's something you can live with.
You don't have to like it, nobody's going to like it, you just have to find a way of not liking it you can live with. That's how it works for me.
casserole_cat 7 points 2y ago
I just continue to accept it and on really rough days I eat chocolate and cry. I have to accept it or else it feels like I have no power over it. Which is true but it’s not a good feeling.
ticklee69 6 points 2y ago
One day at a time
Edit;
when I first found out that I had RP I cried, went through the emotions
But knowing my friends are around to help, helps
It’s not something you can avoid, and it’s something that will just get worse. You have to accept it and push on otherwise it will just drag you down
Edit;
when I first found out that I had RP I cried, went through the emotions
But knowing my friends are around to help, helps
It’s not something you can avoid, and it’s something that will just get worse. You have to accept it and push on otherwise it will just drag you down
SmokingOctopus [OP] 2 points 2y ago
True. It's just that pushing through when the reality is that things are just getting worse.
ticklee69 3 points 2y ago
On bad days, like other people have mentioned, I try to think how lucky I’ve been
I’ve enjoyed sight for as long as I have. I could of been born blind or been in a country that doesn’t have a good health system in place. I like to think that maybe in 20/30 years time there might be treatment that will stop or even reverse the damage my eyes have. I mean, look at what they’re doing with gene editing these days.
I’ve enjoyed sight for as long as I have. I could of been born blind or been in a country that doesn’t have a good health system in place. I like to think that maybe in 20/30 years time there might be treatment that will stop or even reverse the damage my eyes have. I mean, look at what they’re doing with gene editing these days.
xmachinaxxx 4 points 2y ago
I’ve coped poorly but I do have good days where I’ve settled into the acceptance of it. It’s a grieving process. I deal with high anxiety and panic attacks now though, especially when someone is driving me or I feel vulnerable around strangers. You are not alone and I hope it gets better for you.
garlic-lover 4 points 2y ago
It varies. In the beginning it was pretty overwhelming and exhausting. Everything took a lot longer to do and I had a lot of trouble navigating my home without bumping into and tripping over things. I reached out to a number of organizations for the blind but things got lost and it was almost a year to hear back from anyone. The more I concentrated on just one task at a time, the easier it got.
I spent time learning Braille last year because I have tinnitus that often leaves me deaf for hours or days at a time and not being completely cut off from the rest of the world is comforting. There are still times that it is very disorienting to wake up deaf as well as blind bur focusing on the next task I need to do helps most of the time.
Having other people that can relate to what you are going through also helps a lot. Everything takes time to adjust to and when there is nothing you can do to correct the problem, you may find that distracting yourself with just one puzzle/problem to solve at a time, it won’t be quite as scary.
I still have a long way to go in terms of dealing with outdoor excursions but that just requires more practice.
I forgot to mention, I also decided to start learning to play piano. There are lots of things you can still do without sight. It just takes a little more effort at times to find a non-sighted way of doing things.
I hope this helps in some way.
I spent time learning Braille last year because I have tinnitus that often leaves me deaf for hours or days at a time and not being completely cut off from the rest of the world is comforting. There are still times that it is very disorienting to wake up deaf as well as blind bur focusing on the next task I need to do helps most of the time.
Having other people that can relate to what you are going through also helps a lot. Everything takes time to adjust to and when there is nothing you can do to correct the problem, you may find that distracting yourself with just one puzzle/problem to solve at a time, it won’t be quite as scary.
I still have a long way to go in terms of dealing with outdoor excursions but that just requires more practice.
I forgot to mention, I also decided to start learning to play piano. There are lots of things you can still do without sight. It just takes a little more effort at times to find a non-sighted way of doing things.
I hope this helps in some way.
intellectualnerd85 4 points 2y ago
Try getting in touch with the blind community. It helps a lot
SmokingOctopus [OP] 1 points 2y ago
I should do that. I'm a little afraid of doing it as I'll have to face my reality.
FaerilyRowanwind 5 points 2y ago
Sometimes admitting you have a problem is the first step. Treating it like you are processing grief or a loss or death can be very helpful. Knowing you aren’t alone is a good place to start
garlic-lover 1 points 2y ago
I agree, reaching out to others who have gone through similar experiences can really help a lot. Focusing on what to do now also helps as well as having a community that can provide advice in solving problems.
intellectualnerd85 1 points 2y ago
Yes but you’ll hear from others doing it. Hearing how they overcome
. We can do so much!
. We can do so much!
tr8aker 3 points 2y ago
You (we) are all dealing with loss. Grief, anxiety, anger, and a hundred other emotions can arrive with vision loss. (Funny how they leave that part out when they tell you that you're going blind.)
In addition to the many useful suggestions below, consider seeing a professional counselor or therapist. Some therapists even focuse on loss and grief. These folks can often help us all develop the mental tools we need to cope and excel. I and most of my VI friends IRL see these professionals.
In addition to the many useful suggestions below, consider seeing a professional counselor or therapist. Some therapists even focuse on loss and grief. These folks can often help us all develop the mental tools we need to cope and excel. I and most of my VI friends IRL see these professionals.
Gangliest 3 points 2y ago
Treat your eyes like your dog who has a terminal disease: show your eyes all their favorite things, take special care of them, make every day count while your vision lasts.
On some days, it will simply suck. You will bang your head on things and fall over in front of people and have to move certain tasks from the "can" column to the "can't anymore." And that's okay, and you are allowed to feel shitty about it every once in a while.
But you should also let the fleeting temporality of your vision sweeten every day of sight.
On some days, it will simply suck. You will bang your head on things and fall over in front of people and have to move certain tasks from the "can" column to the "can't anymore." And that's okay, and you are allowed to feel shitty about it every once in a while.
But you should also let the fleeting temporality of your vision sweeten every day of sight.
[deleted] 2 points 2y ago
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