A life reshaped by diagnosis

Over the years I have documented about my physical and emotional difficulties since I started the Diary, but one of the things I go back to every time is living a life that wasn’t true. You can’t be true to yourself without knowing the truth about yourself.

For 46 years I lived one way through the control, then when the opportunity arose for me to have an MRI scan, having my Cerebral Palsy diagnosis confirmed made me realise I wasn’t the person I thought I was. Now continually having to work through my symptoms, piece by piece, for the very first time has re-shaped my life and the lives of those around me.

It is true that our emotional growing up years are done in our formative years. Usually by the time we’ve settled into our lives and relationships, we’ve come through knowing everything we need to know about ourselves when we’re young. Through relationships, we become a more mature version of ourselves, because the foundations are already there.

Years on and I am still learning about my psychological and emotional difficulties. That’s bad enough, but it’s not only me who has been affected by my diagnosis and symptoms. As is life, it takes two people, which means the other half of two is also affected, when he or she realises the life they signed up for, isn’t the life they’re living.

Over the years they must also come to terms with the other person’s disability. It makes it all the harder of course, when you’re told the person initiating and controlling your life, simply didn’t want to know.


16 Sep, 2017

6 thoughts on “A life reshaped by diagnosis

  1. Monday the 18th, I’ll find out my diagnosis as a confirmation. I’m really looking forward to knowing. It’ll be a huge closure for me and the family.

    Although, I wish it had been done as a child, I don’t feel bitter toward my parents, they had really good reasons why it was never done. These tests are painful and my mother was not going to allow anything painful done to me done to me, for a diagnosis.

    When she asked the doctor if the tests would make me better, he said ‘no but we’ll know what she has.’ She said she couldn’t rush me out of the hospital fast enough.

    If the tables were turned and it was my daughter, I would’ve done the same as she did.

    1. Thanks Bonnie. I think you’re experiences although similar are also very different. Making an informed choice makes it so. Your mum and dad were given enough information to make a decision around your diagnosis and that is always more acceptable.

      I had a diagnosis at the age of 2, but was never told and had to find that out. I also had to find out for myself through an MRI scan at the age of 46. I think if I had have been given the same situation that your parents had with my own parents, I could have accepted that.

      As parents, we would rather go through the pain ourselves than see our children struggle. I believe that not putting you through the tests, was selfless, not selfish act. Your parents didn’t want you to struggle.

      It’s not always easy to know what we would do in those circumstances until we’re there having to make that decision. Perhaps you would have felt the same, but thankfully it’s not something you’ve had to do.

      Good luck for the 18th.

  2. Yes, it would have been nice to know the truth about myself when I was young, rather than going through the hell that I did because I was made to feel guilty for pretty much everything.

    I had the chance at 13 to get the help I needed, but God forbid I reveal any of the family secrets and deal with my own mental health issues. I could have been spared the extra years of suffering that I went through, along with all the misery that I put my daughter through, which she didn’t deserve.

    Even now I struggle to write any of this down, seeing as those old feelings come flooding right back in, to try to prevent me from doing so. I avoided dealing with them for so long and the biggest one is yet to come.

    I’m just so very tired of fighting who and what I may be seeing, as I just want to finally feel comfortable in my own skin for the first time in my life.

    1. Thanks Randy. Yes, it’s hard coming out of the patterns we get ourselves into through those early experiences.

      I think that as long as we understand our experiences, centred around abuse we can work to change and bring in new experiences; although it’s not easy to do.

      It took me until my 30’s to recognise the patterns in my own childhood, but it wasn’t until I finally got my diagnosis that I made any headway.

      It’s often difficult to know how to change and how to get past abuse, but I believe knowing how we feel and knowing that we don’t want to feel like that is always a good place to start.

      Although we must make the transition and that part isn’t easy, it’s got to be done.

  3. Your blog hits the nail squarely on the head and tells more about your unique story.

    Although your diagnosis turned your world upside down, you finally got to realise who you are, even though you always knew you weren’t who your family made you out to be; you weren’t able to find the true you until a few years ago.

    Your life and those around you had to change following your diagnosis, that was inevitable. I’m sure it has brought about a better understanding from those who want to understand.

    1. Thank you. Yes, I think your last sentence sums up your response nicely and you’re right, only from those who want to understand.

      Although my life has changed for knowing and I am grateful to have that, my life the other side of that with those who weren’t interested, still aren’t.

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