For me the worst thing about having Usher Syndrome (or any disability I'm sure) is the constant battle for understanding.
A little bit goes a long way.
In my own personal experience I have spent more time explaining myself and my condition for people to say they understand and will support me, to later find out they have no understanding at all even though I'm still blue in the face from my explanations and therefore it gets put on their back burner.
When you have to repeat yourself and remind yourself on top of your daily reminders you have difficulty makes you feel degraded, embarrassed, lowers your non existent confidence and makes you less inclined to want to battle on just getting on with everyday life.
All I ask is, say what you mean, don't placate me or try to empathise when you have no intention of doing anything. If you have questions I will answer them.
There is nothing worse than false hope to be sideswiped or knocked back again. This applies to all walks of life, even down to the health professionals who we have to sit down with and 'prove' we struggle in order to receive help.
My aim here is not make you feel depressed but enlightened that the small gestures you might make to help someone. ...... MEAN THEM!
Thank you for taking the time to become more knowledgeable. :)
