This post is specially for parents and families of people with progressive vision loss. Apart from the numerous other challenges that arise out of this condition the strangest is making people believe that you really can’t see. I was diagnosed with RP at a very early age and the doctor told me that I will eventually lose my vision. When the real vision loss started about 5 years after the diagnose, I started having some difficulty coping up with my studies. But equally difficult was making my family understand that this was not an excuse to avoid studies nor was it a psychological effect of doctor telling me about the vision loss. Eventually though they understood my condition and believed that I was telling the truth. Even now I feel that this was the most challenging part of the transition as your family doesn’t understand what’s going on with you and you can’t explain it to them either.
You might ask, why can’t we explain?
Truth be told, because even we don’t know what is happening. We might see something very clearly today but tomorrow it becomes blurry or invisible all together. Sometimes things are clearer in bright light and other times they are not. Things become invisible as soon as they move out of central vision for people with RP. Some of us can easily read a book but need assistance in moving from one place to another. Sometimes the vision stays stable for a long period of time and at other times you feel it deteriorating on a daily basis. So you see it’s really hard to explain. I can’t say about others but I used to hate explaining or giving impromptu vision tests like, “Can you see that car over there?” or “Can you read the sign board?”.
So what do we expect from our families?
In a single word we only expect, “Trust”.
Trust that we are telling the truth. Trust that we might be able to do something today but might struggle doing it other days. Trust that we want to do things independently and will only ask for your help when required. Trust that we do not blame you for the condition. And finally, trust that your support and love will help in making this transition smoother.
If you need some advice or just a listening ear, do leave a comment below and I will get back to you at the earliest. You can also join my facebook group ‘Living beyond Vision’