Not being told

7 Apr 2016

Wanting to be told versus being told? As a child, I wanted to know what was wrong with me. For me it was the only way I would come to understand what I was dealing with, both physically and emotionally.

It would also have taken away my issue of being ignored and misunderstood. Of course, there are people who genuinely don’t want to know what it is they have to deal with. Where it’s clear the individual should have been told initially and wasn’t, it’s then up to the individual to find out.

In my case, it’s been much harder not knowing. I was too inquisitive as a child to not want to know. I tend to work on understanding because without understanding, I become more frustrated. It would also have taken away my reason for being angry. I was unhappy. I wanted and needed to know.

There is also another side to the debate that ignorance is bliss. That a diagnosis defines that a diagnosis separates us from those without a disability or diagnosis to deal with. I would argue that nothing defines us unless we choose to be defined, but people will always choose what they want to be defined by.

Perhaps the problem is with society. We’re diagnosed and labelled both at the same time. I have Cerebral Palsy, but I’m not defined by it. Society needs to let go of the label for those of us who have and deal with a disability. It’s not only about disability, there is also gender and race inequality.

I am defined by the good things I choose to bring into my life and other people’s lives, but I choose not be defined by something that has the potential to emotionally destroy my inner peace. Any physical condition together with our emotional state can destroy those things. I choose not to let it. What do you choose?

If I had my time again, would I have chosen my life differently? If it meant I couldn’t have The CP Diary, because of that change, then it’s a no.

4 Responses to “Not being told”

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  1. Maria Lunde 07. Apr, 2016 at 3:51 pm #

    Living with CP I have been faced with labels concerning my physical ability, intelligence and self worth as a person.

    It can be tiring trying to prove to people that they are wrong. I think I don’t need to prove myself to anybody, but to myself.

    • Ilana 07. Apr, 2016 at 4:12 pm #

      Thanks Maria. Yes I couldn’t agree more, we just don’t have to convince others they are wrong about us, as long as we know it for ourselves.

      People will have their thoughts about us, about our disability. People make up their minds the way they want to. It’s up to us to live, not to have to prove or disprove anything.

  2. Brad 10. Apr, 2016 at 4:29 pm #

    I think it inevitable that not telling you about your CP would eventually unravel, especially as you wanted to know. And that’s the key point.

    I believe it morally wrong to withhold such an important diagnosis from someone. It is not within our responsibility to do that, quite the opposite.

    • Ilana 10. Apr, 2016 at 4:39 pm #

      Thank you. Yes, this would always come back to bite because it wasn’t the universal way to withhold such important information from me. I think if more of us understood that concept, we’d get more right than we get wrong.

      I also agree with you of course that it was definitely a moral responsibility as it is by any parent or family.

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