When it comes to disability, and a diagnosis, we need help with understanding how the symptoms to the diagnosis will manifest itself in every day life.
Sadly, unless you’re a typical text book case, doctors and consultants have no idea how someone with a disability will live their life. Doctors present a future based on a diagnosis and not on the child and what that child might or could achieve with the right support. Consultants are usually book read, but children are much more than their diagnosis. They often go on to achieve more than they’re given credit for.
As I continue to prove, there is always more to a disability than a diagnosis. I’ve had to work through my symptoms to understand how I present as an individual, verify my impairments are, to understand why I think the way I do and how I present myself to the world. My diagnosis may be text book case, but my symptoms certainly aren’t.
Because my emotions and feelings are extensively damaged they are completely rewired. Everything that you think or see as normal, I think and see the opposite. Where things look distorted, I have to make them feel normal, for them to look normal. As a result of impaired emotions, my emotions are flat-lined, for example I don’t get exited or elated. I also don’t see my successes as accomplishments.
I remember being signed off at 15 and told to go and live my life by my consultant, but realistically that wasn’t going to happen without me being able to work out what I dealt with. That was the biggest issue for me, the other big issue was that how I present was not only going to affect me, but everyone else as well.
It would be like asking them to accept that part of me which they don’t even understand, because each day is different and because my emotions are impaired. I feel completely responsible, not because I knew and kept my disability a secret, because that’s not the case, but because I feel I am a burden.
Fifty-five years later and I am still evaluating my symptoms. I shall be looking at and blogging about my ‘hemiplegic’ diagnosis, shortly in a personal blog.