There is no getting away from the fact that I have to continually work back to try to understand how I present through the neurological impairments I was born with. I lived in a world of my own for many years, so that I could work on myself to try to make sense of my symptoms and so I could understand how I presented.
When it comes to disability, it is not only important for us to understand ourselves, but for others to understand us also, so that those others will come in with a more empathetic stance on what we deal with. There are those who sadly think they know what we deal with, more than we know what we deal with ourselves.
When it comes to a disability that happens at birth, the facts are there even if the information or knowledge isn’t. In my own case, for 9 years since my diagnosis, I have made it my mission to understand my symptoms so that I can finally understand myself and how I present.
There were moments where I thought it better I didn’t know. But looking back not knowing has brought about more frustration and anger issues that I’ve had to deal with. If know that if I had my time again, I would still want to know. It makes it harder of course, knowing there was a diagnosis at the age of 3 and I was 46 when I found out.
I am now less frustrated and more resigned to what I know about my symptoms and for me that’s another box ticked.