{{{{HUGS}}}}

I suspect that she didn't know that YOU didn't know.

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I think that she thought you didn't drive because you were legally blind and knew it.

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But that aside, it's a shock, and a surprising number of people with degenerative eye diseases never even know they have a problem until some doctor with zero people skills says, "Well, you're blind now. You'll need to call someone to drive you home because you can't drive any more."


No matter what the letter says, just remember that the invisible ink says, "And you're totally awesome!"

The feeling may be that the sudden label suggests a change in your abilities. It is not. Legally blind is a very general term that covers a large swath. I am legally blind, have been from birth, but it is not something I typically associate myself with.

Dont let a label dictate your abilities and self perception.

Yes, I had a somewhat similar experience.

My vision had been declining for a while. I went to the doctor and she said that something looked odd, that it could be macular degeneration but that was highly unlikely because I was way too young. She then said that the only way I could have it at my age was if it was genetic. She then told me the story of someone who had it at a younger age because of genetics and basically said what a tragedy it was... and how hard it was for them... and how rapidly their sight declined... but I didn't need to worry about that because it was almost certainly not what I had. Still, she wanted to do a few tests.

Five hours later in a phone call to my cell she told me... well... you do have macular degeneration and it is likely genetic. I should take some vitamins and she would see me in a few months. The call lasted all of three minutes. No discussion of prognosis. No discussion of things I might ought to be doing besides the vitamins... nothing.

Later, I wrote her an email asking for a followup appointment to get this information. She said I could see now... so I shouldn't worry about it. She would talk to me at my next appointment.

So, not a very pleasant experience.

No, but I think a lot of us have experienced the dropped ball by eye doctors when your vision is no longer enough to get by doing everything visually.

It's extremely shitty and I'm sorry you're going through it. You're right, that's a conversation you should have had in person and you should have been offered much more support and resources.

Some general practical stuff that may be of use to you:

You can usually submit your own request to start working with your state's department of rehab or commission for the blind. They'll want documentation from your doctor, but the request doesn't have to come from them. Services the state might provide you are orientation and mobility training, learning to use adaptive technology and help buying devices, or assistance paying for college. You can also chose to attend a comprehensive training program (such as the colorado center for the blind) where you live there for some time and are taught orientation and mobility, assistive technology, job skills, home skills, and so on all at once.

As far as school goes, you can work with your school and request from your doctor a letter detailing additional specific accommodations that might benefit you. Extra time on tests, the use of a human scribe if needed, access to accessible electronic or audio textbooks and materials for your classes and so on.

You can also access free or low-cost services like the NLS (national library for blind people,) Bookshare, Learning Ally, NFB Newsline, archive.org's print disability section, and more with proof of vision loss. A lot of organizations accept your registration with the NLS as documentation so there isn't a need to have your doctor fill out 30 different forms. This gives you immediate access to hundreds of thousands of accessible books and newspapers.

Your local NFB or ACB chapter or another local blindness organization can be a good contact for information about what services are locally available, who are the right people to call, and generally how to get what you need where you live.

On a personal level, working with a therapist who is familiar with disability issues has been critical for a lot of people adapting to sight loss. Sometimes local organizations that serve blind people offer these services.

If you have any questions, while I am in no way a professional in any relevant field, I'm happy to try to point you in the right direction.

There are lots of different ways you can be legally blind, and it's more of a title that gives you a medical diagnosis than something that changes your life - unless, of course, it happens suddenly.

I have two legally blind children. One has been legally blind since shortly after birth. He has one eye that works and one that doesn't. He has no peripheral vision, and the 'good' eye is something that is really bad. He wears a -18.0 contact lens and you would never know he was legally blind unless he told you. He doesn't use a cane, he plays video games, he went to a regular school and other than getting preferential seating and enlarged print, that's pretty much the extent of his issues. He does not drive, and can't.

My other child was VI since birth, but didn't become legally blind until she was 18. Her vision was 20/195 corrected for a long time, then one day it was 20/200, and the next year it was 20/205. All of a sudden she was legally blind. It didn't change anything for her at all - she has used a cane for 5+ years (it helps her navigate curbs and stairs), she never got any special treatment at school, but she was more obviously "blind" than her brother - who was more blind than she was, but didn't show it as much.

Once she became officially legally blind, she had access to certain programs and scholarships that she didn't before. There was no big discussion with her doctor, other than her paperwork now said 20/205 instead of 20/195. It wasn't a life-changing event in any way.

Now if this is a life-changing event for you, I can see why you'd want the doctor to acknowledge it with a discussion. But having it on paper wasn't really telling you something you didn't know - it's not like you went thinking your vision was fine, only to be told "hey, you're actually blind." Realistically, if you're right on the edge of VI/blind, you might find that right now you are blind - but in a year, you could take the same test, improve slightly, and all of a sudden you'll be labeled as VI instead.

For me I knew I was bad but the legally blind label was what really drove it home that this is real and isn't going away.

Had the same thing happen to me a while back. It sucks, a lot. I ugly cried for about an hour. Things like this are super confronting, even though you knew you were visually impaired and this doesn’t change how much you see. It’s still rough. Best of luck

There might be a difference between low vision and legally blind where your school is concerned and if your doctor is aware of this he or she may have written the letter the way they did for your benefit. When my partner went back to university in his 40s he was low vision and got minimal support. They told him that unless he was legally blind he was fundamentally on his own. I would talk to your doctor and find out

I got it on a little post it/prescription pad once. I had no idea I was legally blind just thought I was visually impaired. It’s kind of a punch in the gut to be so casually labeled.

Is this your low vision specialist or optometrist? I hate that you are going through all this and on top of it, can't even get direct answers from your doctor. In your last post (I could be wrong, I have not double checked), you said your vision went rapidly (from Stargardt's over past 6 months) from 20/40 to 20/120?

Please, someone, correct me if I am wrong, but defining someone as legally blind in the US is based on the Snellen Visual Acuity Measurement System. As long as your vision in your *better* eye is less than 20/200, you are NOT considered legally blind. However, this might change depending on your Field of View, I am not sure all the details. So, maybe you aren't actually legally blind after all and just need to see a different specialist that has experience with Stargardt's patients.

Where are you located? I could ask the LVS that I work for if he has any contacts that I could refer you to - someone in your area might be able to help or at least provide some answers to questions about your state resources.

Stay positive and continue to reach out - that's what Reddit is great for!

Sorry you had to hear this way. It took me a long time to get it documented. I had to ask for it multiple times. I needed it for the state and everyone took their time. So, silver limning, it can be hard to get and now you have it if you need it!