Ok so, I just had to write this down as it has been on my mind all day... this makes me so sad and it makes my blood boil - even though I can understand where people are coming from. So, I'm sure many of you who know someone with CVI, or like me, have CVI yourselves, have thought about this. When you meet somebody, a stranger, workmate, family member, etc. etc. and they ask you ,, Are you blind?" or ,, What's wrong with your vision? (in my case I have a cane, so it's easy to see there is a vision problem.)
How do you answer them?
Do you say ,, I'm visually impaired" ( as a parent fx, say .. My child is .....)
or - ,,I'm legally blind"
or ,,I'm blind
or ,, I have CVI?
Obviously, it kinda depends on who is asking. If it's a stranger or someone you don't have to work closely with, I usually say I'm visually impaired/legally blind. Everybody understands what that means. Then it's easier to just start to talk about something else.
But what if the one who asks, is somebody who you have to communicate a lot with, like a family member, school/workmate, teacher, coach, etc. ? Then I have to say ,, I have CVI". But when that happens I have to ask myself another couple of questions. Firstly, How do I explain it to them? I know a couple of ways... fx. say : - I have brain damage that causes the brain to being unable to send the right message to the eyes - so they don't know what they are seeing" - or ,, let's imagine your brain is a camera - and your eyes are the camera's lense. Something happens to your camera - which results in it being broken- but the lense is okay. However, since the actual camera isn't functioning - you can't take any photos..... etc etc etc....
I say something along these lines. Then the next question I ask myself is How do I mentally prepare myself to take all the bullsh*t from them? Because I know, in 95 % of cases, people will comment unapropriately which is understandable - don't get me wrong. They will say ,, You must be the only one in the country with it, it has to be rare"
,,But you looked at it- you must have seen it" ( looking at things does not mean seeing them... do you always see the lowest line on the eye chart? No. But you looked at it though :D)
,, You are just attention seeking"
,,It's fake"
,, You saw this yesterday, so why not now?"
,,You can read, so your vision is fine"
.... and many more questions and comments that makes me ( and everyone feel sad and frustrated. It's like I get a flashback from since before diagnosis.... I must be an alien... I'm unworthy... I don't know what's happening to me - I'm alone in this world. Nobody will ever understand me ...
So - how far should I go? Should I prepare myself daily for not being believed? For being undervalued? For being a burden? Because this is now a daily struggle for me.... and for everyone with CVI
Sorry about the rant guys, - It's beyond exhausting to handle all of this sometimes
Hugs <3
Dagbjört