Without my lenses in I have recently been told by the hospital that I would very likely be classed as partially sighted.
Basically I rely on my lenses for my sight and of late my tolerance to them has not been great. Currently it is starting to pick up a little however it is still only around 7 hours lens wear time with one eye and approx 5 hours with the other and at that only 5 days a week.
Now of course there are ways to try to get around this, wearing one lens at a time etc and I do try to just get on with it and manage.
However, others and more recently so than ever seem to have little understanding nor do they seem to want to understand what exactly my condition is.
Recently in a meeting the nail was hit on the head when I was told, as an example to me to try and help me understand others perception 'Susan, the problem is most of the time you look fine, you are focussing most of the time on those speaking and making eye contact etc with us all so no one thinks any further about what you have told them previously about your eyes' they then went on to say 'if you had no arms no one would give you a pen and ask you to make notes, they can see this would cause you difficulties'.
Now this is probably a very extreme comparison and was not made with any malice in fact the people concerned I regard as friends however, just how do I get others to acknowldge what my condition is.
Now I as I am sure others also feel do not want pity however, I am fed up with people telling me there is nothing wrong with me or pull yourself together.
I also wonder whether part of the problem is when I am without lenses I am usually confined to the house and don't see many people. Shopping etc for me even when I am accompanied is now very fristrating as I find I can't see what I want and the number of people who have rammed me with their trolley, well that is another story.
Someone once suggested I carry a white cane although, I wonder how this would work as I would not currently always need to carry it and I still feel that things could be so much worse.
I remember reading on a post some years ago that some hospitals are reluctant to register people as partially sighted and am not sure this would be the answer anyway. However, I do feel all people with KC need something taken into consideration as after all most of us for part of the time are 'partialy sighted' due to issues such as lens wearing time or days without lenses due to one reason or another.
Does anyone else have any tips or experiences ?
Susan
