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Do you feel more impediment in your everyday life due to your blindness or due to the causes of that blindness? (self.Blind)
submitted by KingWithoutClothes
So, this may be a bit of a strange question, please let me explain. I feel like on this sub there are quite a lot of "lucky" people who were born blind and whose eyes are otherwise completely fine. They just don't work but that's it. Other people, including myself, deal with various medical issues. Usually, these issues are at least to some degree the cause of our blindness.
Now, as my vision has almost completely left me throughout the past few years, my medical problems have also become worse (the former is actually a cause of the latter). Going blind really sucks but when I think about my life quality overall, I've never been quite sure what is worse, the blindness or the causes of that blindness.
I'll give you a concrete example. Since I was born, I've been having a ton of issues with glaucoma. Due to this, there have been countless things that I wasn't and still am not allowed to do. For example most forms of physical exercise are out of question because it would be a danger to my eyes. When I jog for example, there is an impact force every time a foot comes down on the pavement or treadmill. For other people this is no problem but for my eyes it's very dangerous. When I was a child/teenager, I had this big dream of attending a karate or judo class but my doctors told my family in very clear terms that it was not an option. Likewise, I wanted to learn how to play the saxophone but that was also out of question. When I went to the public pool with my friends I wasn't allowed to jump off the spring board. Whenever I went on beach vacations with my family, my parents and siblings would go diving but I wasn't allowed to. I remember this one time in Egypt when literally my whole family went out diving to see all the beautiful fish in the Red Sea (my parents both have a license to go down to 30m/100ft). I was the only stuck there in the hotel room and it felt super shitty. I could go on but you probably get my point.
Another thing that causes me a lot of problems is the fact that my eyes are essentially inflamed all the time. It's particularly bad now during the winter. I take different medications to sooth it but there's still a base level of inflammation that won't go away. As long as I stay home and take my eye drops and ointments, this isn't too big of a problem but as soon as I leave the house, I feel the pain crawl into my eyes. The longer I'm outside, the worse it gets. I'm not working at the moment (I'm a student) but I'm already dreading the future where I will have to be out at my job 8 hours every day, plus another 3 hours of commuting, grocery shopping etc. I'm scared because when I do this now for just one day, my eyes usually hurt a lot in the evening. It takes several days for the inflammation to calm down again. I can't imagine what it will be like once I need to go out for so many hours every single day.
When I look back at my life and also when I look forward, I feel like these kind of issues have a giant and very negative impact on my life quality. In many ways they have made my life extremely difficult. Now, not having any vision is also really shitty but some days when the pain in my eyes is particularly excruciating, I feel like the blindness is actually the least of my worries. I also feel this way when I hear of fellow blind people who do all kinds of activities that I can't do for one or another reason. However, there are of course also the opposite days when I feel like the missing vision is really the worst part. I usually feel this way when there's something I really, really want to see but can't. I also feel this way when sighted people do certain tasks in 2 seconds that take me 2 minutes. That can be pretty annoying.
Anyway, I'm curious how you wonderful people think of all of this. If you're also in my boat and you've got some kind of eye-related issue that causes you troubles aside from the blindness, how tough is that for you compared to the challenges of bllndness itself?
Now, as my vision has almost completely left me throughout the past few years, my medical problems have also become worse (the former is actually a cause of the latter). Going blind really sucks but when I think about my life quality overall, I've never been quite sure what is worse, the blindness or the causes of that blindness.
I'll give you a concrete example. Since I was born, I've been having a ton of issues with glaucoma. Due to this, there have been countless things that I wasn't and still am not allowed to do. For example most forms of physical exercise are out of question because it would be a danger to my eyes. When I jog for example, there is an impact force every time a foot comes down on the pavement or treadmill. For other people this is no problem but for my eyes it's very dangerous. When I was a child/teenager, I had this big dream of attending a karate or judo class but my doctors told my family in very clear terms that it was not an option. Likewise, I wanted to learn how to play the saxophone but that was also out of question. When I went to the public pool with my friends I wasn't allowed to jump off the spring board. Whenever I went on beach vacations with my family, my parents and siblings would go diving but I wasn't allowed to. I remember this one time in Egypt when literally my whole family went out diving to see all the beautiful fish in the Red Sea (my parents both have a license to go down to 30m/100ft). I was the only stuck there in the hotel room and it felt super shitty. I could go on but you probably get my point.
Another thing that causes me a lot of problems is the fact that my eyes are essentially inflamed all the time. It's particularly bad now during the winter. I take different medications to sooth it but there's still a base level of inflammation that won't go away. As long as I stay home and take my eye drops and ointments, this isn't too big of a problem but as soon as I leave the house, I feel the pain crawl into my eyes. The longer I'm outside, the worse it gets. I'm not working at the moment (I'm a student) but I'm already dreading the future where I will have to be out at my job 8 hours every day, plus another 3 hours of commuting, grocery shopping etc. I'm scared because when I do this now for just one day, my eyes usually hurt a lot in the evening. It takes several days for the inflammation to calm down again. I can't imagine what it will be like once I need to go out for so many hours every single day.
When I look back at my life and also when I look forward, I feel like these kind of issues have a giant and very negative impact on my life quality. In many ways they have made my life extremely difficult. Now, not having any vision is also really shitty but some days when the pain in my eyes is particularly excruciating, I feel like the blindness is actually the least of my worries. I also feel this way when I hear of fellow blind people who do all kinds of activities that I can't do for one or another reason. However, there are of course also the opposite days when I feel like the missing vision is really the worst part. I usually feel this way when there's something I really, really want to see but can't. I also feel this way when sighted people do certain tasks in 2 seconds that take me 2 minutes. That can be pretty annoying.
Anyway, I'm curious how you wonderful people think of all of this. If you're also in my boat and you've got some kind of eye-related issue that causes you troubles aside from the blindness, how tough is that for you compared to the challenges of bllndness itself?
B-dub31 5 points 3y ago
The damage to my optic nerves was partially caused by a massive blood clot in my brain. It’s going to be there the rest of my life and basically the left side of my body is handling double the circulatory work. I have to be mindful of it every day. My balance is poor due to intercranial hypertension. Crappy hand to draw but I’m making the most of it.
IzzyReptilia 5 points 3y ago
this is a very interesting post and im sure there's a lot more people who also go through this. I can only speak for myself though, and unfortunately I've been in both situations when I felt the impediments was due to my blindness and others when they were due to the causes.
I have aniridia, a rare eye condition that has consequences such as ulcerations, cataracts and glaucoma as well. For now I only have cataracts and a corneal scar on my right eye. A few years ago I started getting a lot of ulcerations and it was very painful . I had to leave in the middle of class a lot because I couldn't bare the classroom lights or screens, and just any sort of sensory stimulation made it somehow worse. I spent a while at home until I finally recovered and stopped having pain, but it was a a major set back in studies and affected my mental health. So, I know what that's like to a certain extent.
Without the pain, which would be most of my life, the impediments I've comed across have been caused by the blindness itself. It's a real shame because glaucoma is such a shitty thing , but I still think there should be a way around it. I know people with glaucoma who manage to do pretty normal activities, they just have to find the way adapt it to their needs. Perhaps you can't jog but you can do some exercise on a fixed bike, or just gp for long walks . Sure, it isn't as thrilling, but its better than nothing.
family and doctors have a tendency to over protect because they probably want to avoid risking it . Sometimes its simply up to us to overcome that barrier if we truly believe we have the capability. .
I have aniridia, a rare eye condition that has consequences such as ulcerations, cataracts and glaucoma as well. For now I only have cataracts and a corneal scar on my right eye. A few years ago I started getting a lot of ulcerations and it was very painful . I had to leave in the middle of class a lot because I couldn't bare the classroom lights or screens, and just any sort of sensory stimulation made it somehow worse. I spent a while at home until I finally recovered and stopped having pain, but it was a a major set back in studies and affected my mental health. So, I know what that's like to a certain extent.
Without the pain, which would be most of my life, the impediments I've comed across have been caused by the blindness itself. It's a real shame because glaucoma is such a shitty thing , but I still think there should be a way around it. I know people with glaucoma who manage to do pretty normal activities, they just have to find the way adapt it to their needs. Perhaps you can't jog but you can do some exercise on a fixed bike, or just gp for long walks . Sure, it isn't as thrilling, but its better than nothing.
family and doctors have a tendency to over protect because they probably want to avoid risking it . Sometimes its simply up to us to overcome that barrier if we truly believe we have the capability. .
KingWithoutClothes [OP] 2 points 3y ago
Holy sh... omg. I can't quite believe this. You said you've got aniridia? I have anirdia too!! You are literally THE FIRST PERSON I have ever met in my entire life with this same condition! Like, EVER. This is pretty insane. Would you mind if I pm you?!
Btw. Thank you for your thoughtful response ;)
Btw. Thank you for your thoughtful response ;)
8i8oio 1 points 3y ago
If I may, that’s true. The over-protective family is hard, but.. on the other hand.. my family neglected my symptoms on several occasions.. and I lost my right eye due to it. It’s better than no one caring at all.
IzzyReptilia 1 points 3y ago
Ofcourse. I mean, extremes are never good. Something intermediate where they understand you are in certain situations where you need protection and others where you don't
quanin 3 points 3y ago
As someone who was born blind and also has glaucoma, I think it's pretty safe to say the only thing that's made me lucky is it kicked the shit out of my eyes before I was old enough to give a damn. By the time I was 3 I had more surgeries than you could shake a stick at, was on eye drops, even had one of those prosthetic lenses on account of my right eye is, let's say, not insignificantly smaller than it should be. Mine's been under control, if you could call it that, for coming on 20 years or so, now. Of course by under control, I mean I don't get the headaches I used to, I'm not visiting the eye doctor every couple years just in case my pressures have gotten stupid, and I think the last time I took eye drops I was maybe 10. Did the cause of my blindness cause me problems? Oh, hell yeah. Does it now? Not even maybe. The damage is done, it can't get any worse and won't get any better, and if ever it proves me wrong the next step is probably they take the eye(s). As for my actual blindness, the only part of that that causes me any real issue these days is other people's opinions on my blindness. The actually being blind is the least of my problems.
CloudyBeep 3 points 3y ago
I want to correct one point you've made.
You say that most people born blind are lucky because they don't have to deal with medical issues that caused their blindness.
This isn't strictly true. Many people who are born blind are born with additional disabilities. I think the reason that people forget about this is because posting on Reddit is just something that people with an intellectual disability can't do. I heard a few years ago that the number of people born blind without additional disabilities is projected to decrease.
However, I do understand the point you're trying to make with this post.
You say that most people born blind are lucky because they don't have to deal with medical issues that caused their blindness.
This isn't strictly true. Many people who are born blind are born with additional disabilities. I think the reason that people forget about this is because posting on Reddit is just something that people with an intellectual disability can't do. I heard a few years ago that the number of people born blind without additional disabilities is projected to decrease.
However, I do understand the point you're trying to make with this post.
KingWithoutClothes [OP] 3 points 3y ago
Thank you, I actually didn't know about this. I stand corrected.
8i8oio 2 points 3y ago
I HAVE THE IMPACT ISSUE!!!!!
Omg! No one has ever believed me!!!! I bought expensive, fancy running sneakers just for walking long distances <angry> it really sucks!!! But I’m relieved to hear I’m not the only one.
I had a lot of inflammation about the beginning of my diagnosis (Myopic Degen) and I mean the first 5 years or so. It seemed most stress related, so I rarely have eye pain now. Course I don’t read anymore, so might also have less strain.
I don’t know what you’re going to school for, but working from home helped me.
I don’t know what’s worse, my legal-blindness or my symptoms. Both are still such a shocking change, and varies each year or month, or even day... (my issues are degenerative and fluctuate) ..that I never get a real grasp of my ever-changing situation. It just all sucks ~ but usually..... pain is the worst, because you can’t focus or be YOU. I never knew what a “pain scale” was till my eyes broke. Good lord can it get bad.. especially light sensitivity.
I appreciate your post, this is a very helpful discussion for me. I wish you well in all your goals!
Omg! No one has ever believed me!!!! I bought expensive, fancy running sneakers just for walking long distances <angry> it really sucks!!! But I’m relieved to hear I’m not the only one.
I had a lot of inflammation about the beginning of my diagnosis (Myopic Degen) and I mean the first 5 years or so. It seemed most stress related, so I rarely have eye pain now. Course I don’t read anymore, so might also have less strain.
I don’t know what you’re going to school for, but working from home helped me.
I don’t know what’s worse, my legal-blindness or my symptoms. Both are still such a shocking change, and varies each year or month, or even day... (my issues are degenerative and fluctuate) ..that I never get a real grasp of my ever-changing situation. It just all sucks ~ but usually..... pain is the worst, because you can’t focus or be YOU. I never knew what a “pain scale” was till my eyes broke. Good lord can it get bad.. especially light sensitivity.
I appreciate your post, this is a very helpful discussion for me. I wish you well in all your goals!
KingWithoutClothes [OP] 1 points 3y ago
I totally feel you. My condition also fluctuates. Generally speaking it only becomes worse but there are good and bad days. Sometimes I have no pain at all and sometimes it's really terrible.
Since you've mentioned the running shoes, I've got to ask you another question: have you ever tried to run and gotten a headache from it? I have this extremely weird issue that a lot of physical exercise tends to give me a headache. I know it's somehow tied to my eyes because I feel it intuitively. My GE couldn't help me because he thought I'm probably just not drinking enough water or eating enough food before exercising or something like that. But I've tried everything... drinking more, eating more, eating less, it doesn't matter. There are a few things that don't give me a headache such as swimming but many other things do. For a while I tried running (against my eye doctor's advice) but I had to stop again because I always suffered such horrible migraines afterwards. This is particularly strange because I usually don't have a lot of headaches. I once posted a question about this on here but the mods deleted it because "medical questions are not allowed". I'm not really looking for medical advice though, I'm just so curious if other blind and visually impaired folks experience something similar. This would help me determine if it's actually related to my eyes or not.
Anyway, independently of this, thank you for your post and of course I too wish you all the best for the future!!
Since you've mentioned the running shoes, I've got to ask you another question: have you ever tried to run and gotten a headache from it? I have this extremely weird issue that a lot of physical exercise tends to give me a headache. I know it's somehow tied to my eyes because I feel it intuitively. My GE couldn't help me because he thought I'm probably just not drinking enough water or eating enough food before exercising or something like that. But I've tried everything... drinking more, eating more, eating less, it doesn't matter. There are a few things that don't give me a headache such as swimming but many other things do. For a while I tried running (against my eye doctor's advice) but I had to stop again because I always suffered such horrible migraines afterwards. This is particularly strange because I usually don't have a lot of headaches. I once posted a question about this on here but the mods deleted it because "medical questions are not allowed". I'm not really looking for medical advice though, I'm just so curious if other blind and visually impaired folks experience something similar. This would help me determine if it's actually related to my eyes or not.
Anyway, independently of this, thank you for your post and of course I too wish you all the best for the future!!
8i8oio 1 points 3y ago
Yep. Running causes me headaches too. Honestly, riding in a car on a bumpy road will give me a headache... so it’s not hard to track. I never asked a dr about it, cuz they ignore my odder symptoms - but I did just assume it was related to eyes, since I certainly didn’t have the issue before the deterioration.
This reveals a bit more about me than I like, but, I was very silly, even as an adult. I’d skip down a hall, do cartwheels, headstands. I don’t have a reason, that was just my personality before the pain and diagnosis. Holding still constantly was my very first eye-trial. So I’ve been VERY personally aware of the pain caused by physical movement, and then eventually impact (bumpy roads / running). So I can assure you the sensitivity increased over time. I can’t prove it in a medical way, but it’s been 9 years since my diagnosis ~ and I’m very aware of how my life has changed.
This reveals a bit more about me than I like, but, I was very silly, even as an adult. I’d skip down a hall, do cartwheels, headstands. I don’t have a reason, that was just my personality before the pain and diagnosis. Holding still constantly was my very first eye-trial. So I’ve been VERY personally aware of the pain caused by physical movement, and then eventually impact (bumpy roads / running). So I can assure you the sensitivity increased over time. I can’t prove it in a medical way, but it’s been 9 years since my diagnosis ~ and I’m very aware of how my life has changed.
CosmicBunny97 1 points 3y ago
I’d say it’s a bit of both. Retinopathy of prematurity prevents me from playing a lot of sports, and the glaucoma caused by the ROP will probably be... problematic if I do fall pregnant due to the drops (they can be managed luckil, but I’m still worried). And like... if I have kids, I fear I won’t be a good mother because of my disability. Like not being able to find them at the playground, not being able to drive them places etc. A lot of it is my own anxiety. Like I’m scared I won’t be able to get a job because of my vision impairment and the fact I don’t have a drivers license and can’t drive (I’m pretty honest though(.
KingWithoutClothes [OP] 2 points 3y ago
I completely understand you. My wife and I are now aged 30 and 31 respectively and we would love to have kids in the relatively near future (next 2-3 years). My wife is fully sighted but we are still quite worried how it's going to be. I have almost no functional vision left and there's a chance I might be plunged in complete darkness in these next 2-3 years or so. This is something that obviously really makes me panic inside. It also makes me wonder how I can possibly be a decent dad if I don't see anything. Like, how do you feed a baby when you're blind? How do you read bedtime stories (I don't know braille)? How do you navigate with your kids through the city? I have this dream of carrying my baby on my back because my dad used to do that too and in the beginning this will probably work fine. I can carry the baby and use my cane. But what happens once the kid becomes too big/heavy and is supposed to walk by itself? And how do I not step on my toddler accidentally when I walk through the house? I don't know... there are just so many question. Of course I also worry that I will put too much work onto my wife and she worries about the same thing. In the end, I guess it's something I will never be able to know for sure unless I simply try it out.
I also really understand your fear about the pregnancy. This is a bit silly but I've actually never thought about this before. I have severe glaucoma myself but since I'm a guy, I never wondered about the pressure/force that would be put on the eyes.
And yes, I worry about my future job prospects too. To be fair though, I think almost everyone in this sub does haha ;). The truth is I've tried extremely hard to get a very good education to be as qualified as possible. But in the end, I still can't be sure of anything. It's also confusing because there are some people in my life who tell me "don't worry, it's all going to work out perfectly fine without any problems" and then there are other people who tell me "I'm super worried about you, I think it's gonna be extremely difficult for you to find anything, you're kinda screwed."
I also really understand your fear about the pregnancy. This is a bit silly but I've actually never thought about this before. I have severe glaucoma myself but since I'm a guy, I never wondered about the pressure/force that would be put on the eyes.
And yes, I worry about my future job prospects too. To be fair though, I think almost everyone in this sub does haha ;). The truth is I've tried extremely hard to get a very good education to be as qualified as possible. But in the end, I still can't be sure of anything. It's also confusing because there are some people in my life who tell me "don't worry, it's all going to work out perfectly fine without any problems" and then there are other people who tell me "I'm super worried about you, I think it's gonna be extremely difficult for you to find anything, you're kinda screwed."
CosmicBunny97 1 points 3y ago
Oh my god yes, i get it. So many fears! I’m only 22 so kids are way off but it’s something I’ve always wanted. I wonder if there are any blind parents on here because i want to know how they do it. Like changing diapers/nappies, navigating, reading (I also don’t know Braille) etc.
vegeto079 1 points 3y ago
I would say it's incorrect to equate the reasons behind being blind and compare it to say one person is luckier than the other. But I can understand that route of thinking and wouldn't fault you for it.
It is unfortunate that, among being blind, you have other issues that may be directly related to it. Others may have some of the same problems, but not all of them. I would hope that wouldn't lead to thinking less of them or that they are "luckier".
It is unfortunate that, among being blind, you have other issues that may be directly related to it. Others may have some of the same problems, but not all of them. I would hope that wouldn't lead to thinking less of them or that they are "luckier".
KingWithoutClothes [OP] 2 points 3y ago
I certainly wouldn't think less of them. But yes, I would consider them luckier than myself because... they are. At least when it comes to this particular issue. I don't blame them for it in any way though. It's obviously not a fate any of us have chosen. I'm also luckier than someone who was born, say, deafblind. That doesn't mean their life is less valuable or anything like that, it just means that I get to be a little "privileged" for lack of a better word. Just like all the sighted people are ridiculously privileged compared to us. The big difference is of course that I cherish this privilege; I am deeply grateful for all the things I can still do. With sighted people I often make the experience that they take their sightedness for granted.
vegeto079 1 points 3y ago
Everything is relative. Every person "struggles" but what they struggle about is unique to their own reality. I don't think it does any good to compare someone who is legitimately struggling with another person legitimately struggling, and say "well the other person is luckier because I have it worse".
By saying you are not as lucky as others downplays their own struggles. Even if it's true that they had "30 struggles" and you had 50, doesn't mean they didn't have 30 struggles. They feel just as shitty about their struggles as you do about yours. Everyone is struggling; life is struggling. Some people struggle more than others, but we all struggle.
By saying you are not as lucky as others downplays their own struggles. Even if it's true that they had "30 struggles" and you had 50, doesn't mean they didn't have 30 struggles. They feel just as shitty about their struggles as you do about yours. Everyone is struggling; life is struggling. Some people struggle more than others, but we all struggle.
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