I was pretty much born this way but yeah, keep on top of it. There are things you can do, you can learn to use your phone with magnification turned on or a screen reader. The same is true on PC/mac. You can still have a life, you can still do things. I'm not going to play NFB here and say you can do anything you want or be a fire fighter or something lol, but many of the things you see as limitations are merely obstacles that can be worked around. Stay strong, and don't be afraid to ask for help, even if it's just talking to someone.

Hello from Southern California. My husband has Pigmentosa he has grown up having it since he was about 11 or 12 she has had other things happen as far as PTSD causing events in his life. But he says that going blind is one of the scariest things that he has ever done. And he also states that he is also very very alone and angry. I have suggested counseling or therapy for him since I really don't know how to help him much anymore cuz it's getting worse. My suggestion is to talk to everyone around you and just explain how your eyes are doing and where you're at and what you would like for them to do as in letting you be a little more independent or in what areas you would like help in. He has refused therapy for a long time he is just now coming around to it and he is 40 we have four kids together from previous marriages you should be proud that you're actively seeking help as far as therapy and realize that yes there are a lot of visually impaired people out there. I will try to look for a support group around you also look into your States disabilities benefits. My husband has had came training and they also offer other classes as in how to use your phone because that is a big one for him. I ramble sorry. The main point being. Yes you are totally ok in feeling scared/angry/depressed ect just don't let it take over. ALWAYS ASK FOR HELP. You are not a burden if you say please and thank you (it can get frustrating not doing things for yourself and manners seem to be forgotten) Be safe, don't be stubborn and I really hope they can figure out how to help you. :)

I'm also going blind and they don't know why. It started in February and 10 months later I'm partially blind in both eyes. Every day I wake up not knowing if I'll be able to see.

It's terrifying and I feel alone. I vent about so many other things that are going wrong with my body, but losing my vision I don't talk about much. I don't want to admit how bad it's gotten. This may very well be my last Christmas that I'll see the tree.

I get it. Trust me. I've also looked into Braille because I don't know when I'm going to need it and I don't want to be unprepared.

I am totally blind, a software engineer, husband, and I have 5 kids. There are tons of resources, and absolutely no reason you can't continue to take care of your family, shop, etc. Yeah, it requires a different set of skills and tools, but it's definitely doable. I'd be happy to share some ideas and resources, or just answer any questions you might have. Feel free to PM me, or ask questions in this thread. Best of luck!

Believe me when I say that you are not alone in this. I am a "sightee" who works in a place that specifically hires people who are blind or visually impaired. It is still a learning experience for me and I hear what you are saying A LOT from them. Your concerns are valid and I can't tell you to not be scared or upset, even frustrated. There's a few things you can do is get orientation and mobility training and therapy for starters so you can retain extra skills. Contact the N.I.B (national Institute of the blind) I hope you do well friend ✌👈

Hello Vegas! I stayed with buddies in Summerlin last year, although most of my memories are at the bottom of a series of margaritas at Margaritaville on the strip. I may be back in the spring. I would totally meet up with you so long as there are margaritas. I mean, it's Vegas.

You don't seem to have any solid idea of what the future holds so I'll talk about a worst case scenario. I'll say what I usually say. I lost my sight very suddenly when I was 19 and I will never sugar coat it. The truth is I didn't like it then and I don't like it now. What you do is find a way to deal with not liking it, so you can concentrate on other normal life stuff. People will tell you all kinds of things along the lines that you have to accept it, acceptance is key. Maybe that works with very young people, but I've mentored teenagers and they're not really into letting it change them, they have an idea who they are and aren't interested in giving that up. At some point you become unwilling to give up who you are for it, so you fight every battle, find a way to do everything you want to do, which is harder in the short term but more rewarding in the long term. The thing to realise is that this is actually possible. You can fight the battles, you can find ways to do stuff. Yes, you will occasionally find you need help and yes, that really chafes. Margaritas help.

Maybe all that makes me some sort of idiot but it's about self respect at some level.

About braille. I've been blind for twenty years and I only just started learning. So, even if you do end up needing it, don't worry too much about when. Do it when you feel like it. It's not essential these days. I have a job, I have a life, I don't really need braille, I just wanted to be able to read for pleasure. And again, only if you end up needing it.

​

Sorry to hear it. Have you by chance had an MRI done yet? I'm nowhere close to a doctor, but that's how they diagnosed me at least, and the same happened to me -- right eye went first, and a little while later my left eye went. Turned out I had lesions in my right optic nerve caused by a fall that the MRI picked up on, and the blood slowly leaked from behind my eyes up through the lesions.

​

I went blind a little over 3 years ago at the age of 35, so understand the despair and loneliness. All I can say is it's not the end of the world, and it does get better.

​

Although I'm sure this is probably the last thing you want to hear right now, once piece of advice I can give is try to have some fun with it. For example, when you're out grocery shopping and waiting for whoever you're with to grab some things, go ahead and break out into a dance jig in the middle of the aisle. It's fun, feels good, and what's the worst that will happen? People will probably look at you funny, but if you can't see them anyway, who cares? I know that sounds stupid, but it helped me at least.

This IS the sub for this. Welcome. Hello from Florida. I feel your pain and your fear. Telling you 'it's going to be ok' is not good enough. Telling you you WILL have some tough times ahead is reasonable. Telling you that you WILL have great days too-- you will. You just have to keep plodding through and asking for help. Don't be embarrassed or ashamed to ask for help. You are going to need it. And the support too. We are a small group here, and I am new-- but I've been legally blind since I was born. We are here for you.


I can tell you about a wonderful place I went to in the 90's that changed my life. It's called the Louisiana Center for the Blind. They also have a sister center in Denver, and another one in the north east, though I forget-- is it in Baltimore? They helped me accept my limits, but then they pushed me HARD to show me that nothing had limits. The blind are not limited. They pushed me to do more than I ever thought I could do. The state paid for it, all of it. It was a 6 month program. I would recommend it to anyone who is partially sighted, losing their sight, or totally blind. They are there for everyone. Even children. Please look them up and see if their program is something you might be interested in.


Hang in there, friend.

darling, i'm so sorry. I'm legally blind now (with one eye) after losing my vision slowly for the last 9 years. 9 years. 5 of which i fought what was happening and made things harder on myself.

I'm in Arizona, so I'm not far from you. Our state programs (like learning a cane, getting transportation, etc) are going to be different \~ and none of it is going to be easy.

I'm just now starting a family.

I feel your pain so much... please message me any time. i'm happy to offer a place to vent and ask questions as you navigate the changes in your world. I have a blind friend that let me do the same - text any time about how to know if shirts are inside out, or just to cry. Letting yourself feel and process is the best advise that I can give right now. Hugs.

Other people in the thread have already suggested getting training, and that is one of the best things you can do for yourself to preserve your independence and your state of mind and mental well-being.
I lost my site overnight at the age of 25, and it is hard, really hard, but one of the best things you can do for yourself is admit that it’s hard, and don’t be ashamed of that. Be willing to let those feelings out at least amongst the people who are close to you and who you trust, because there’s just no way you can handle this alone you just can’t and letting yourself be open and vulnerable is not weakness it’s strength. Beyond that though, you would be amazed at how little some things in life will change. Yes a lot of things will change, and the truth is you’re probably never going to get completely over that but for all those changes, you’d be amazed at how much life stays the same in the ways that matter. My final piece of advice is, just remember that independence isn’t doing everything yourself, it’s getting done what needs to get done.

I was kinda born mostly blind and went through losing even more vision recently. It sucks and no words will change that. But you aren’t going to become helpless and lost even though it might feel that way right now. You’ll have to change how you do some things and there’s a bit of a learning curve, but you can do it. And it’s okay to feel what you’re feeling; this is hard to go through and most people won’t understand. I’m sure it’s been mentioned, but as soon as you get a diagnosis of legal blindness (even if they don’t know the cause they can still write you the necessary letter saying that you are), go to the nearest Vocational Rehabilitation office to get started on opening a case with them. If there’s a National Federation of the Blind chapter in your area, go to a meeting. I’m not sure exactly what the American Council for the Blind can do but they have a lot of online resources and may be worth contacting. And sign up for the free Hadley School for the Blind mail order braille class; if you like to read you will want to start learning braille, trust me!

Hang in there! Transitions in life are hard and this is a big one. You aren’t alone though.

[deleted]