Blind and Visually Impaired Community
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Is your condition/disorder rare? (self.Blind)
submitted by KingWithoutClothes
Hello everyone,
One of the most frustrating and difficult things about going blind is that you feel incredibly isolated. Especially if you're like me and you don't know any other blind or VI people in real life, this is super tough and creates a type of estrangement from the rest of the world. As I'm going blind and trying to somehow make it through all these challenges without giving up on life entirely, I know there's nobody who can truly understand what I'm going through. Sure some sighted people have a lot of empathy but it's still impossible to know what it's like to be me and I totally understand that.
In these situations, it makes a lot of sense to reach out and talk to other people who are blind or severely visually impaired. This is the main reason why I've joined this sub.
Unfortunately, I've come to realize something rather... sobering. The truth is, even in this community I feel like an outsider to some degree. For starters, there are the people who have always been blind and go around saying "cheer up, it's all peanuts!" They don't have a concept of what it means to lose your most essential sense and so there's very little connection and similarity between us. They may understand some of my everyday struggles but just like the sighted folks they will never understand the unspeakable pain and mourning that comes with going blind as an adult.
However, even among the people who have gone blind later in life, many seem to share a disorder in common. For example RP seems extremely common on this sub. Now, please don't hate me, I know there are different types of RP and all that. But still, the medical issues and the problems that come with them are overall similar.
My disorder is very rare. It is present in roughly 1 out of 100,000 people. By comparison, RP is roughly 28 times more common. In a way, this can be quite tricky for me because while I still greatly appreciate the advice and the conversations on this sub, I frequently feel like I can't fully relate to all the other people here - and they probably wouldn't be able to relate to me. Sure we may both walk with canes and experience similar challenges in dating situations but in terms of specific medical issues and problems related to those, we are completely different. Even the most common part of my disorder, which is lifelong high glaucoma, which means I have to take a lot of different medications and which prevents me from doing all kinds of tasks is very rarely talked about here. Other parts of my disorder are things I've literally NEVER met anyone who has the same thing, neither in real life nor online.
This can make me feel quite weird at times. Like I said, I still appreciate this sub exists and I don't mean to put out a sob story here. It's just that due to the rarity of my disorder, I tend to feel very isolated even within the blind/VI community.
My therapist has told me that I should have a look for self-help groups in my are to meet other blind folks in real life. I think that's a great idea but I'm also scared. I think what I'm scared of is that I'll be sitting in a room with 20 people who have RP and are like one big family while I'm that odd guy who has a disorder that none of those other blind people have even heard of, let alone know what it's like to live with it.
Does anyone here have similar feelings?
And sorry if this was a bit of a mess, I'm not a native speaker.
One of the most frustrating and difficult things about going blind is that you feel incredibly isolated. Especially if you're like me and you don't know any other blind or VI people in real life, this is super tough and creates a type of estrangement from the rest of the world. As I'm going blind and trying to somehow make it through all these challenges without giving up on life entirely, I know there's nobody who can truly understand what I'm going through. Sure some sighted people have a lot of empathy but it's still impossible to know what it's like to be me and I totally understand that.
In these situations, it makes a lot of sense to reach out and talk to other people who are blind or severely visually impaired. This is the main reason why I've joined this sub.
Unfortunately, I've come to realize something rather... sobering. The truth is, even in this community I feel like an outsider to some degree. For starters, there are the people who have always been blind and go around saying "cheer up, it's all peanuts!" They don't have a concept of what it means to lose your most essential sense and so there's very little connection and similarity between us. They may understand some of my everyday struggles but just like the sighted folks they will never understand the unspeakable pain and mourning that comes with going blind as an adult.
However, even among the people who have gone blind later in life, many seem to share a disorder in common. For example RP seems extremely common on this sub. Now, please don't hate me, I know there are different types of RP and all that. But still, the medical issues and the problems that come with them are overall similar.
My disorder is very rare. It is present in roughly 1 out of 100,000 people. By comparison, RP is roughly 28 times more common. In a way, this can be quite tricky for me because while I still greatly appreciate the advice and the conversations on this sub, I frequently feel like I can't fully relate to all the other people here - and they probably wouldn't be able to relate to me. Sure we may both walk with canes and experience similar challenges in dating situations but in terms of specific medical issues and problems related to those, we are completely different. Even the most common part of my disorder, which is lifelong high glaucoma, which means I have to take a lot of different medications and which prevents me from doing all kinds of tasks is very rarely talked about here. Other parts of my disorder are things I've literally NEVER met anyone who has the same thing, neither in real life nor online.
This can make me feel quite weird at times. Like I said, I still appreciate this sub exists and I don't mean to put out a sob story here. It's just that due to the rarity of my disorder, I tend to feel very isolated even within the blind/VI community.
My therapist has told me that I should have a look for self-help groups in my are to meet other blind folks in real life. I think that's a great idea but I'm also scared. I think what I'm scared of is that I'll be sitting in a room with 20 people who have RP and are like one big family while I'm that odd guy who has a disorder that none of those other blind people have even heard of, let alone know what it's like to live with it.
Does anyone here have similar feelings?
And sorry if this was a bit of a mess, I'm not a native speaker.
__Gingervitis__ 5 points 3y ago
I have never related to a post more. What's really frustrating, is that the doctors themselves do not have answers for me, because of how rare it is.
CloudyBeep 4 points 3y ago
I've been blind my whole life, so I completely understand if you want to ignore my thoughts.
There are about five really common conditions that cause impaired vision; I think that they are (in no particular ordgh) RP, cataracts, glaucoma, macular degeneration and diabetic retinopathy.
While lots of people have these extremely common conditions, there are lots of people who, like you, have conditions that most people don't know about simply because of how uncommon the conditions they have are.
Rather than trying to find people with your specific condition, you could try to find the people who can't rely on an RP support group or a macular degeneration support group. The reason you should try to find the other people who don't fit into a common-vision-disorder-group, apart from being easier than finding people with your condition, is that no-one's experience of losing their vision is the same, because everyone loses it at their own pace and has different life circumstances (their support network, their home, their job, etc.). Unlike losing a family member when everyone passes through some sequence of stages of grieving—because now scientists know that there's more than one set of stages—losing a sense like vision is different for each person, especially for the people with rarer conditions who cannot rely on the experiences of others to know about the future.
Finally, I just want to state that some people who were born with a vision impairment know what losing a sense is like because they might have been born with impaired vision that they gradually lost, or they may have lost their sense of hearing or touch, so even some of us know what it's like to lose part of what makes us human.
There are about five really common conditions that cause impaired vision; I think that they are (in no particular ordgh) RP, cataracts, glaucoma, macular degeneration and diabetic retinopathy.
While lots of people have these extremely common conditions, there are lots of people who, like you, have conditions that most people don't know about simply because of how uncommon the conditions they have are.
Rather than trying to find people with your specific condition, you could try to find the people who can't rely on an RP support group or a macular degeneration support group. The reason you should try to find the other people who don't fit into a common-vision-disorder-group, apart from being easier than finding people with your condition, is that no-one's experience of losing their vision is the same, because everyone loses it at their own pace and has different life circumstances (their support network, their home, their job, etc.). Unlike losing a family member when everyone passes through some sequence of stages of grieving—because now scientists know that there's more than one set of stages—losing a sense like vision is different for each person, especially for the people with rarer conditions who cannot rely on the experiences of others to know about the future.
Finally, I just want to state that some people who were born with a vision impairment know what losing a sense is like because they might have been born with impaired vision that they gradually lost, or they may have lost their sense of hearing or touch, so even some of us know what it's like to lose part of what makes us human.
brimstone_tea 3 points 3y ago
I have a rare condition myself, which makes light hurt my eyes so I am in pain most of the time, but never ever have I experienced other blind people giving me a feeling of isolation about that. After all, everybody faces their own problems and is aware that you face yours. Nobody who knows how going blind feels focuses on the medical specifics when they have the chance to talk to people who have the same fate. You'll know what I mean when you meet other people who went blind later in life.
This doesn't apply to old people though because they seem to love to tell everyone the details of their medical history...
This doesn't apply to old people though because they seem to love to tell everyone the details of their medical history...
stg0 2 points 3y ago
I'd like to preface this by saying I'm not blind but my best friend is (cone rod dystrophy, also very rare) and we've spent probably thousands of hours talking about blindness as well as my disability and the challenges they can bring to life so hopefully I can offer some advice or at least show you that there are people out there you can connect with without being limited to the tiny number of people with your condition as putting that expectation of failure on 99.999% of potential friendships limits what things might become with others which can only ever lead to the sense of isolation and loneliness only the visually impaired can ever know.
Being blind can be lonely enough as it is and it can often lead to depression (as I'm sure you know all too well) which causes us to isolate ourselves even more and things go round in a vicious cycle with vision and everything else getting worse with each passing day. Going blind as an adult brings with it this and a lot of other new and different challenges to being blind from birth and sometimes it might feel like every time you finally come to terms with something you can't do any more now there's a dozen more and you can't escape but I promise you there is light at the end of the tunnel.
For years my friend struggled to accept what was happening; he wouldn't walk with a cane, would never talk to anyone about it and believed that it was a sign of weakness to ask for help from anyone. He was pretending nothing was going on so he could grasp on to the fragments of what once was: the friendships, the things he could do and the places he could explore. Ultimately this leaves you feeling more isolated than before you started trying to make things seem normal again. You feel lonely when you're surrounded by people. You have to be willing to reach out to people and talk about who you really are and the struggles you face. Allow them the opportunity to understand rather than giving up on the pursuit altogether because that stage isn't going to come the first time you speak and being let down can feel like that kick that breaks you when you're already down.
Please reach out to other people, VI or not, same disorder as you or not, and talk to the ones that care about you because they will listen and eventually they will begin to understand even if they never fully can because that's the only way to feel less alone. I know you'll probably dread doing it and convince yourself of a million reasons why things are going to go wrong but I promise you won't regret it.
I really hope the courage to reach out and start to not let yourself and the people you relate to be defined by the bad things in your life but by the positives. Feel free to drop me a DM if you ever want to talk because I really want to be there for you if you feel like you need someone!
Being blind can be lonely enough as it is and it can often lead to depression (as I'm sure you know all too well) which causes us to isolate ourselves even more and things go round in a vicious cycle with vision and everything else getting worse with each passing day. Going blind as an adult brings with it this and a lot of other new and different challenges to being blind from birth and sometimes it might feel like every time you finally come to terms with something you can't do any more now there's a dozen more and you can't escape but I promise you there is light at the end of the tunnel.
For years my friend struggled to accept what was happening; he wouldn't walk with a cane, would never talk to anyone about it and believed that it was a sign of weakness to ask for help from anyone. He was pretending nothing was going on so he could grasp on to the fragments of what once was: the friendships, the things he could do and the places he could explore. Ultimately this leaves you feeling more isolated than before you started trying to make things seem normal again. You feel lonely when you're surrounded by people. You have to be willing to reach out to people and talk about who you really are and the struggles you face. Allow them the opportunity to understand rather than giving up on the pursuit altogether because that stage isn't going to come the first time you speak and being let down can feel like that kick that breaks you when you're already down.
Please reach out to other people, VI or not, same disorder as you or not, and talk to the ones that care about you because they will listen and eventually they will begin to understand even if they never fully can because that's the only way to feel less alone. I know you'll probably dread doing it and convince yourself of a million reasons why things are going to go wrong but I promise you won't regret it.
I really hope the courage to reach out and start to not let yourself and the people you relate to be defined by the bad things in your life but by the positives. Feel free to drop me a DM if you ever want to talk because I really want to be there for you if you feel like you need someone!
SpikeTheCookie 2 points 3y ago
Great post. I think we all need several communities or groups, because no one group can be all things to all people (and shouldn't be).
​
And thanks to the Internet, we are only limited by the number of languages we speak and understand.
​
So one goal could be to either find the online group where people with your disorder gather... or start one.
​
There is huge value in finding people who truly understand your experience down to the tiniest details. It's a relief, really. An overwhelming relief that your life experience and challenges aren't all in your head. ;-)
​
Then think of what other support you need. For example: blind dating, vision impairment in the workplace, technology solutions for the blind, etc.
​
Let that guide the other groups you belong to.
​
And thanks to the Internet, we are only limited by the number of languages we speak and understand.
​
So one goal could be to either find the online group where people with your disorder gather... or start one.
​
There is huge value in finding people who truly understand your experience down to the tiniest details. It's a relief, really. An overwhelming relief that your life experience and challenges aren't all in your head. ;-)
​
Then think of what other support you need. For example: blind dating, vision impairment in the workplace, technology solutions for the blind, etc.
​
Let that guide the other groups you belong to.
soselections 2 points 3y ago
I have also felt the great depth of isolation that you are feeling, maybe just to a different degree or in a different way.
I have a more common eye condition but I got it at an extremely uncommon age. I was diagnosed with proliferative diabetic retinopathy when I was 19. My Opthalmologist told me the odds of this were 0.001% (at that time) and that he's never seen such a severe case in this young of a person.
I felt even more isolated when I looked at the other patients in my clinic and still to this day, all above the age of 60 and staring (or trying to) at me. Because being so young and low vision is unusual where I am.
I've joined multiple support groups and you're right, most have RP or glaucoma or macular degeneration. But what the other commenters have said is true, support groups are there to help, learn and ultimately understand you and where you're at with your eyes. It won't erase the feeling of being "special" or being "rare" but it will dull it because you'll realize you really aren't alone and everyone's experience (even with the same diagnosis) is different. My local support group is still full of folks who are 60+ but they accept me as person in their mid-20's and don't treat me any different.
Give it a shot and know that you have the right to feel the pain of isolation, but you don't deserve to feel that way forever. I know that is suffering.
I have a more common eye condition but I got it at an extremely uncommon age. I was diagnosed with proliferative diabetic retinopathy when I was 19. My Opthalmologist told me the odds of this were 0.001% (at that time) and that he's never seen such a severe case in this young of a person.
I felt even more isolated when I looked at the other patients in my clinic and still to this day, all above the age of 60 and staring (or trying to) at me. Because being so young and low vision is unusual where I am.
I've joined multiple support groups and you're right, most have RP or glaucoma or macular degeneration. But what the other commenters have said is true, support groups are there to help, learn and ultimately understand you and where you're at with your eyes. It won't erase the feeling of being "special" or being "rare" but it will dull it because you'll realize you really aren't alone and everyone's experience (even with the same diagnosis) is different. My local support group is still full of folks who are 60+ but they accept me as person in their mid-20's and don't treat me any different.
Give it a shot and know that you have the right to feel the pain of isolation, but you don't deserve to feel that way forever. I know that is suffering.
vapidvision 2 points 3y ago
I get that feeling of isolation being around sighted people, brother. Isolation is a very human response to significant change in your vision. I feel isolated by my limbo state, enough vision to sometimes feel an imposter in blind communities, but definitely not enough vision to function in 21st century industrialized society unaided.
I feel that my disorder is pretty rare too— only met one other person who had NF1 and she actually lived a few blocks away when I was growing up; I never knew if she knew I had it too, so I never talked about it with her. Always regretted not making that connection.
I feel that my disorder is pretty rare too— only met one other person who had NF1 and she actually lived a few blocks away when I was growing up; I never knew if she knew I had it too, so I never talked about it with her. Always regretted not making that connection.
szaez 2 points 3y ago
Are you on Twitter? Look for the hashtag #a11y, and mentions for 'blink' and you'll find lots of people.
Folks might not have your_exact_ condition, but that only means they're going to be at the same destination you'll eventually be, without having taken a similar journey.
It's just my opinion, but I figure it's ok to share it: Life can be much harder experiencing it with others like you dealing with similar issues, because you and they will deal with it inevitably different. Once your paths diverge, you will ultimately have the decision of dealing with shit you already learned to get over, or they will towards you. Either way, the hurt is just not worth it.
Take the journey alone and meet others at the end instead, in my opinion. We all end in the same place but our excursion has been wildly different.
Anyway, best of luck to you, friend.
Peace.
Folks might not have your_exact_ condition, but that only means they're going to be at the same destination you'll eventually be, without having taken a similar journey.
It's just my opinion, but I figure it's ok to share it: Life can be much harder experiencing it with others like you dealing with similar issues, because you and they will deal with it inevitably different. Once your paths diverge, you will ultimately have the decision of dealing with shit you already learned to get over, or they will towards you. Either way, the hurt is just not worth it.
Take the journey alone and meet others at the end instead, in my opinion. We all end in the same place but our excursion has been wildly different.
Anyway, best of luck to you, friend.
Peace.
[deleted] 1 points 3y ago
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aloe_chaos_lamb 1 points 3y ago
I can relate to what you're feeling. I also have an extremely rare condition (probable AZOOR), so rare there isn't even an estimated prevalence for it. I was delighted to find one person on this sub with the same diagnosis. Before my recent vision loss, I had no clue there were so many different ways to go blind/lose vision! I'm 30 years old and had near-normal vision til a few months ago. It's hard to even explain what my symptoms are and my family is pretty much at a loss. Relatives keep saying, "It's getting better though, right?" I'm like, dude, okay, for the hundredth time, it is literally an untreatable disease that is never getting better and is currently getting worse! At the same time, I'm ambivalent about getting involved with the blind/VI community in person and/or taking advantage of services. I'm afraid people will think I'm faking it or overreacting because I currently can still function almost like a sighted person...except when I can't. Anyway, you're not alone--there are a lot of us here with various rare conditions.
Vision loss is really hard--socially, emotionally, logistically, on every level. I think what you're feeling is a very normal and understandable reaction to such a challenging experience. I think if you did go to the support group, you might be surprised to find that other people there can relate, whatever their diagnosis.
Wishing you all the best and hoping you find a greater sense of community, both here and in person.
Vision loss is really hard--socially, emotionally, logistically, on every level. I think what you're feeling is a very normal and understandable reaction to such a challenging experience. I think if you did go to the support group, you might be surprised to find that other people there can relate, whatever their diagnosis.
Wishing you all the best and hoping you find a greater sense of community, both here and in person.
ConstantIncident 1 points 3y ago
I've had Aniridia my entire life (it's hereditary for me, but rare for others), I got used to light being much brighter and haraher for me so I've always worn dark sunglasses. My doctor didn't check my eyes as thoroughly as he should have though (considering the family history), so I've also ended up with advance glaucoma and I've lost pretty much all of my peripheral vision too.
I've never met anyone outside of my family who had the same condition or can share my story and it honestly makes me feel so alone sometimes. Even my parents (one of whom has the aniridia) can't relate as they didn't develop advance glaucoma.
I always thought as a kid, it wouldn't effect me so much later on in life, but here I am, as an adult, struggling daily. I always think about everything that happened and how it all could've been prevented, but since the doctor i had seemed none the wiser about my condition and thought i was putting eye dilating drops in, he dismissed our questions numerous times...
I've never met anyone outside of my family who had the same condition or can share my story and it honestly makes me feel so alone sometimes. Even my parents (one of whom has the aniridia) can't relate as they didn't develop advance glaucoma.
I always thought as a kid, it wouldn't effect me so much later on in life, but here I am, as an adult, struggling daily. I always think about everything that happened and how it all could've been prevented, but since the doctor i had seemed none the wiser about my condition and thought i was putting eye dilating drops in, he dismissed our questions numerous times...
ratadeacero 1 points 3y ago
My wife has progressive cone dystrophy. It was pretty rare and took a couple of years to figure out. Some people actually thought she was faking vision loss and even suggested a psychologist. Finally, a specialist discovered the genetic disorder. It is certainly a change from 5 years ago when she had nearly perfect vision to going to using a blind stick to get around. (Yeah, yeah. It's a cane and this sub gets salty about terminology. But that's what it's called at our house.)
I don't know if she necessarily felt isolated but definitely went through depression. I'm sure everyone faces their own challenges. Hang in there and know you're not alone in your struggles.
I don't know if she necessarily felt isolated but definitely went through depression. I'm sure everyone faces their own challenges. Hang in there and know you're not alone in your struggles.
[deleted] 1 points 3y ago
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samarositz 1 points 3y ago
My condition starts with the word "probable," meaning they think that they know what it is but aren't sure. Anyways, can you give us a little more detail on what specifically is making you feel isolated? Speaking for myself, but I am sure a lot of others too, that is the last thing we want you to feel in the community.
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