My late diagnosis

Although I was late getting my cerebral palsy diagnosis, I have still had to work through all of my many neurological symptoms, what they mean and how they manifest themselves in me.

Even if I had have had my diagnosis as a child, the specialists wouldn’t have understood the neurological connotations, how my diagnosis would play out in comparison to someone else with the same diagnosis. The irony though, is that I had one diagnosis at two and a half.

I’ve had to painstakingly work through my symptoms on my own. A diagnosis for anyone with a disability doesn’t make us less or more disabled, but it’s a diagnosis that allows us to stop wondering, feeling frustrated, or choosing to be defined by it.

Any diagnosis will give others reason to misjudge or discriminate if they are that way inclined. I don’t conform to the stereotype of cerebral palsy because I’m not disabled enough and I am able to live my life, but I do think that sometimes works against me.

It’s not like a broken leg that people see, where they get to resonate, or offer sympathy. But I have had to work conform to fit into my life. For those who don’t understand our symptoms, they may be quick to judge, through a lack of understanding on what are our neurological difficulties.

Since finding out about my diagnosis 8 years ago now, I’ve spent years working it all out. What I write about in my cerebral palsy blogs, is who I am and my experiences as they happened, not necessarily in order.

23 Mar, 2017

4 thoughts on “My late diagnosis

  1. The way you influence your readers to make sense of their emotions is the upside of things. Your call to action, something medicine or technology couldn’t bring.

    So while you spent years working it all out, you’ve made life much better for people with disabilities, including myself.

    1. Awww thanks Tim. Honestly, I do have my moments, but the flip side of the coin as you say, is allowing myself and my readers to make sense of their own emotions through my thoughts and feelings.

      Just by me having these experiences to deal with and work through have made this journey completely unique to me. If one thing has come good, it is just that and I wouldn’t have it any other way.

      To be able to help so many people make sense of their own emotions, including myself; is a journey I could never have imagined all those years ago.

  2. It does seem kind of hard to comprehend that nobody picked up on your issues over the years, outside of the home. Of course you probably never mentioned anything about it, because you had been dealing with them on your own for so long that it was irrelevant.

    It sounds like you had some of the same dynamics in your world, as far as that subconscious imperative to never talk about anything. God forbid anyone knows what’s really going on at home. My parents always seemed to argue over everything and anything without having any regard to us; hearing about things that kids don’t need to know.

    They made it very clear indirectly that we had to keep our mouths shut to avoid ending up in foster care. It sounds like you had to deal with the code of silence too in your world. It was like we were living as secret agents never being able to talk about what was really going on around us.

    Your parents minimally addressed your issues but never really explained it all to you. My parents’ barely noticed my first suicide attempt, let alone admit to the horrors of our childhood. They expected us to act like our childhoods had been fantastic when it was anything but.

    I refused to address my issues because I didn’t want to be anything like either one of them, but ended up being something so much worse. I just want to be able to live my life without hating myself so much and to be comfortable in my own skin!

    1. Thanks Randy. Yes, it’s a shame nothing was in place for you.

      As they say it’s better to come from a broken home than to live in one. I feel for you too. Your circumstances sound similar, but different to mine. I tend not to dwell, it serves little purpose, but can handle most things.

      Not knowing wasn’t actually the problem for me, it was the deceit of not knowing that I struggled with more. The truth always helps even if it gives us the wrong closure.

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