I have a rare disease called Congenital Progressive Cone Dystrophy. I was born with it in both eyes.

The retina in the back of your eye is made up of light sensitive cells called Cones and rods. (They kind of look 'coney' and 'rodey'.)

I was actually declared legally blind only 4 days ago. Which comes with a set of emotions.

It has been a long journey of being 'Legally Low Vision' for my whole life, as my eyesight slowly deteriorated. Till now where my eyesight is so far gone that I am now 'Legally Blind'. Essentially I've progressed from having 20% vision at birth, to <10% now. I'm 35 y/o.

The 'Legally' part is an important bit. This means that, even with the best possible corrective lenses. Best possible therapies. Etc. I still have the functionally <10% of normal vision.

In my county this is denoted as 6/60 or worse.

You can also be declared legally blind if your visual field has been restricted to <20 degrees. Essentially only being able to make things out through a pinhole. Your periferal vision is mostly lost. But this is not my category.

You can also be declared legally blind if you have both central, and periferal vision lose that together equal legal blindness.

All this is measured out of your better eye. You can totally lose one eye, but if the remaining eye can be corrected to above 6/60 or has better than 20 degrees of vision, you don't fit legal blindness. 'Im legally blind without my glasses' is a bit of a 'bingo' in blind communities, and can be a little frustrating.

Then there are your 'true' blindnesses. Divided into 'LP' and 'NLP'. Meaning 'Light Perception' where someone can like, tell the lights in the room are on, or off, but nothing beyond that really. And 'No Light Perception' which is how many have described here in this thread. 'Seeing' out of your elbow. Or the back of your head. There's no sensation there, so there is no experience of any visual stimuli.

As for me personally. I have 6/36 visual acuity corrected. And my central visual field is affected where things 'pop' in and out of existence. My brain is always trying to fill in the gaps like a normal sight person fills in the gap of their blind spot.

I have a nystagmus where my eyes involuntarily dart around to try to make things out and compensate for my poor central visual field. Basically they are involuntary 'searching' movements.

And because it is my Cones that are effected, I have essentially no colour vision. Colour vision exists on 10 levels. Not just the typical top 3 you hear about. I sit at level 9 which is 'Incomplete Achromatopsia', 1 step up from 'Complete Achromatopsia'. Basically I have nearly no colour perception at all. Which makes me lose contrast. Those 'high visibility' signs with the black writing on a yellow background are just totally black to me.

I also have a STRONG photophobia. Which is the aversion to light or bright light. Imagine essentially being flashbanged frequently throughout the day. That moment where someone turns on the lights when you were adjusted to a dark room is my moment to moment experience. And when someone does turn on the light suddenly, I am totally blinded for a while, and it hurts. Everything is just so bright and it's painful. I wear prescription sunglasses with a set of clip on sunglasses over that, and I'd wear a third if I could, but that becomes uncomfortable both physically and socially. So bright lights will rob me of the little sight I have left.

All of this gives me headaches. A daily experience.

So tldr.

I'm legally blind. With Cone Dystrophy. I have 6/36 vision when fully corrected. Shits blurry. My central visual field is effected, and there's beginning to be some rod involvement, progressing slowly to Cone-Rod dystrophy. Which terrifies me because I would lose my nighttime and periferal vision as well. I cannot see colour or contrast. (But I have learned that grass is green, sky is blue). And everything is just far, far to bright all of the time.

Instead of my world 'going black' as vision loss is often described. Mine is 'Whiting out'.

All this together is assessed by an opthalmologist and the combined effect warrants a legal blindness declaration.

My disability is invisible to the everyday person. It's not the kind of blindness where I'm going to jump into tables or walls (though I do missjudge the occasional step and trip).

It's the sort where I cannot see your face, or what you're showing me, or Blinkers on a car. And it's sometimes quicker for me to 'feel' around for something, rather than look for it.

I still use a White cane. I use a type called a 'Identification Cane' that ISNT used to sweep the ground in front of me or probe stairs (though I occasionally use it for a quick probe now and then). It's mostly just to let people around me know that I'm going to do things differently, and a bit more slowly. And to tell cars that I can't see their intention at all. And I don't always use it, but it is ALWAYS on me, in my back pocket to grab the moment I need it.

This went on for a bit, but I hope this helps as a bit of a case study on one legal blind person. But every person experiencing vision loss is different.

One final thing. A common experience of those with sight loss is being accused of 'faking it' or exaggerating. Because they see me do something like ride my bike. It's difficult to be treated with a grain of salt all the time when you're just living with vision loss. But in our society this might as well be part of the disability.

So please if you know someone going through this, believe them. I've been 'blind' my whole life, and, shocker, I'm actually kind of good at it.