I've posted on here before and after trying to live around my visual impairment for three months now, I truly believe I led to myself recieving an incorrect assessment. I'm not finding VI impossible to live with, but I've realised I may have trapped myself into things being extremely difficult. I'll try to explain my situation as best as I can and what has led me to believe this, so sorry for a long post.

I think I'll start off with what most of my vision assessment in the hospital consisted of, which was looking at a chart from a distance, peripheral vision test (the one with the little lights) and my eyes being examined. For the chart test, I noticed my blind spots would cover most of the letters so I moved my head to try and clearly decipher the letters (I'm now thinking I shouldn't have done this). No one mentioned me moving my head and the nurse seeing to me seemed pretty absorbed in my file, so maybe it wasn't important at all so maybe I'm mistaken. I was guilty of shifting my gaze during the peripherals test too as I just couldn't help it, but I'm completely certain my peripheral vision has become worse anyway (I'll explain this in a bit). I haven't been to the hospital since I was diagnosed, but I was told I have some eye disease called AMN that only about 100 ish other people in the world seem to have and that it shouldn't get worse, but definitely wouldn't get better (since then I've played the lottery and haven't won so yeah I hate how my luck works, thought I'd give it a shot though).

About a month after this I reached out to an organisation that helps the blind and visually impaired. They received my files from the hospital and apparently I have 20/20 vision despite having huge blind spots and floaters in my vision constantly (also I wore glasses before I even had this disease so I just found it funny that my vision is apparently 20/20). I was even told I would technically be allowed to drive, which I wouldn't do seeing as there's a huge chunk of the world I can't see and if something darted out I most likely wouldn't see it, which was a sentiment that was agreed with and I was even told there's lobbying being done for what is classed as visual impairment that does impede daily life to be extended to people like me. I was given a lot of things to help me by this organisation despite all this so I am glad for that as I do need it.

The things that have alerted me to the fact I may not be recieving adequate aid has been work and getting myself around. Two months ago I started summer work in a restaurant, I was initially a server but they realised I had trouble with this so I told them the situation and I was moved to clearing plates and being in charge of the lift that brings down food. They didn't have me in much because of this, but after an incident where I just couldn't see a plate of food in the lift and it went up and down a good number of times, with staff even ringing the kitchen and the table complaining before someone else saw it in the lift by chance (a new dish had to be made by that point though) I wasn't called in as much, I think it was only one more time before two weeks passed with nothing from them. My supervisor wasn't mad at me for the plate incident, which I had apologised profusely for after I realised what I had done. It also happened at the time I found out I failed a college exam and had to repeat it in a few weeks, so when my supervisor called me in after the two weeks I told her about this, and she seemed to take this as an opportunity to advise me to focus on that instead of working and she would find someone to replace me (I don't regret doing this at all because I feel I did need this time to study, especially with studying being harder for me now). My supervisor did say I could contact them once I was free and I could work for them again. I did this about three days ago and have got no reply from them, and I'm wondering if they just don't want me back as they found someone likely more competent than me. This did lead me to realise my work is suffering because of my vision, and I'm probably not that desirable as a worker because of it.

The other thing that made me realise my vision is getting in the way as such was when I went to an event with my boyfriend, with me nearly walking into people when I turned and not moving out of the way for people as I just couldn't see them. It took me a while to figure out it was because my peripheral vision had gotten worse. I'm aware I probably looked very ignorant/drunk/both. I figured maybe it was because I had a few drinks, this was the first thing with so many people around I had been to in weeks. I realised it wasn't this a few days ago when I had to go into the city alone and the same kind of thing happened, I even felt very overwhelmed and dizzy, and it seemed the more people there were the less I can see (I don't know what explains that, but this did all prove that yes my peripheral vision has gotten worse). To be honest, going around like this is embarrassing to me and makes me feel ignorant. I've also noticed my vision in my right eye is getting worse with more blind spots.

My doctor did say it shouldn't get worse, but this is a disease with only a hundred or so people so I don't think it's too far fetched I could be an abnormality (I really don't want this but I also don't want my condition ignored if it is indeed worsening). I'm wondering if when I next go to the hospital, do I try to do these vision assessments by adjusting myself to them, or should I not be doing things like moving my head and slowly figuring out what the letters are? (I am very slow with these assessments). Some family members have told me I've probably been diagnosed incorrectly because I've been doing this. Sorry for the long post again and thanks for any help.

In summary: I feel embarrassed in public as I have trouble getting myself around, my work has suffered despite my apparent 20/20 vision, which I think is incorrect due to the fact I move my head to see around blind spots during assessments. Is this causing an incorrect assessment?