Having written for 10 years about cerebral palsy, and trying to piece my disability together, I am struggling to come to terms with the enormity of being left in the dark around a disability I didn’t know I had.
It goes something like this. You live with symptoms you didn’t know were symptoms, you struggle, you continue to fail, you struggle, and you fail again. There is no empathy or compassion around your disability. Judgments begin to form on your capabilities, then four decades later there is a glimmer of hope, when your mum says something that makes you think about what you have.
The information you’re given allows you to question what you have for the first time, which helps explain your physical symptoms, because you can see those, but then there’s still the question of how you present mentally and emotionally. Starting the process in your 40’s, you’re then told by a consultant that you were been born with something that finally gives an explanation for your physical, mental and emotional struggles.
Life becomes clearer because you finally have your diagnosis, yes an explanation, but it still leaves you with burning questions because all you have is a diagnosis with no understanding of your symptoms. You still don’t know what your mental or emotional symptoms are or why you struggled, what they mean, and you can add a further 10 years to those struggles.
You start the process again when through a further consultation and more testing, you’re told you have autism, which explains your difficulties in school around your mental and emotional struggles. My biggest struggles are having my disabilites normalised for 46 years, before I was able to start the process of finding out.
I apologise if I’ve said it before, but it’s not something you just get over, through yes. Wilful acts, although hard to reconcile do bring about a different thought process, ones that won’t go down well with those concerned.