alone in KC world

[eman samir]

i suffer from a problem of being in a separate world.i mean no one can see what i see or even imagine it.i face a difficulty of describing my vision to others.even the web site the may simulate KC vision doesn't simulate my vision very much.moreover i can't see what most of other see.i feel that i live alone with my vision.may be most of you don't feel that problem but if any of you has it so what you gonna do?

[GarethB]

Prior to finding this site, yes I did feel alone.

I think it is fare to say none of us with KC have the same vision and see the world differntly.

Do I feel alone.

NO

That is purely down to the love and support of my friends, familly and just as importantly the help, advice and support I have found from the others that post on this site.

[donna]

My vision is different from the recreated images on the web site, but that is what KC is like. Everyone has different experiences.
I felt alone until I joined this web site and now the only time I feel like I am struggling is when I am in a situation where people dont know what KC is and what I am going through,

[Andrew MacLean]

Eman

I think we have all lived with the experience of isolation as we face the differences with which we are compelled to live. I remember when I was able to wear contact lenses living with 'part time' sight. At home I would take out my lenses and in that instant I became legally blind in both eyes, until I put them in again and recovered 'normal' sight.

Actually, my children used to exploit my part time blindness. If they were up to something they should not have been doing, they had learned that all they needed to do was remain perfectly still. If my lenses were out I would not be able to see them.

But I learned quickly that there were things more important to me than being able to see well. Chief among these was the love of my family and the support I received from friends. Certainly they did not know, nor could they understand how impoverished my sight was, but that did not matter to them; what mattered to them was the simple proposition, 'Andrew has a visual impairment. With our help his impairement can be prevented from becoming a disability.'

When my sight failed completely (that is, when I became unable to wear lenses any more and was blind full time) I knew the love of my family and well rehearsed support of all the people with whom I worked. To be honest I think that the only time I have really felt completely alone with Keratoconus was when I was on my way home from the hospital consultation when I was given the diagnosis.

I know that this is a difficult journey for you, but I know also that if you let the people on this forum share your burden, your burden willb ecome lighter. There is a wise saying that a burden shared is a burden halved, but a joy shared is a joy doubled. Do not only let us share your burdens, let us also share your joys and your journey may become easier.

Yours aye

Andrew

[Lynn White]

In many ways we are each of us an island. We cannot show others what we see, hear or feel. We can only try by communication.

Obviously, you can't explain to every stranger you meet what your vision is like. But maybe they have some other problem of their own that they cannot explain to you. For example, if someone has a stroke they may be in a position that they have vision loss, physical restriction and also the inability to communicate properly. So whatever they are trying to say comes out as something entirely different. As you can imagine this is entirely frustrating!

Before you had KC, you may never have even given something like this a thought. But now you have, you may wonder whether the people you meet in life may also have some problem they cannot explain to you.

Many here will be able to understand how you see Eman... even us professionals. And the aim of this Group is to explain to the world how people with KC see and to increase understanding of the condition generally.

In this world we are all alone but we can also help each other not be be quite so isolated. The members here can help you through the difficult times if you let them.

Lynn