"For every day, for every week, for every month, for every year, for every milestone, I should have been told about my disability. Being told about my disability was not a luxury I was afforded.

For every struggle, for every negative thought, for every time I was told to do my exercises without an explanation, and for every bad mark I received because I couldn’t articulate my learning difficulties – I should have been told.

I think back to my childhood and wonder why it had to be so difficult. If my upbringing had been different, I would have had the answers. I did what was expected of me; I did the exercises – but never without a fight.

I always knew about the difference in muscle tone and the length of my leg, but I never questioned it – it wouldn’t have changed anything anyway. I was aware that my left foot had an unusual shape, but I didn’t know why or what it was called. I didn’t understand why I walked with a limp or why my steps followed a toe-heel pattern.

School reports were always a source of embarrassment. I dreaded taking them home and hated the thought of my parents reading them. I remember counting down the days until I could leave school, and looking back now, it feels sad to think that was my reality."

Ilana Estelle is a mental health and wellbeing advocate who combines educational insight with her personal experience of living with physical, mental, and emotional disabilities. She holds diplomas in Counselling, Diet and Nutrition, Nutritional Therapy, Psychotherapy and Counselling, and Stress Management. Through her writing, Ilana supports others in navigating their emotional, mental, and physical health challenges. In addition to writing for The CP Diary, her work has appeared in healthy lifestyle magazines. Ilana is also the author of three books: Cerebral Palsy: A Story – Finding the Calm After the Storm, Spirituality, Healing and Me, and Survival: The Covid Years – Time for Change.

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6 comments on “I Should Have Been Told”

  1. You are unique, because you have found a way to relieve your most potent anxieties. You seem to have waxed and shined your experiences until they no longer humiliate you.

    Yes, you should have been told everything, but you jump started your life extraordinarily well.

    1. Thanks Tim! Yes, I feel unique every time I write a blog. How I write, what I write is completely unique.

      I used to feel embarrassed by my disability, I would hide myself away, but now I no longer feel embarrassed or humiliated. I have learned to care less.

      None of this is mine to own, others must take responsibility.

  2. Yes, it would have been nice to know what the real problem was when I was a kid, instead of always thinking that everything was my fault. My parents made us feel like we were such a burden and there are many times that I wish that they wouldn't have had children.

    They never really talked about anything that was going on, so we were usually blindsided by things that would happen, like having to move constantly and living like gypsies when we shouldn't have had to.

    I just think that it's wrong when parents don't take care of their children like they should. It's making my life very difficult now, since I feel like I missed out on so much and I'm going to get myself into trouble trying to make up for lost time.

  3. Thanks Randy. Yes, children aren't burdens, they're children. This is on your parents, not on you.

    I think your parents will know now. When anyone enters the 'spirit world' they are given their lives lessons, your parents are no exception.

    When you were growing up, parents didn't talk to their children about things, so you will have been blindsided to things. You will have learned through default.

    Not always ideal Randy, but it is a good way to learn.

  4. Of course you should have been told everything. The universe had different plans and that was your good fortune, lucky for us.

    1. It's taken me a lot of years to come to terms with my life, with a lot of anger through the early years that wasn't down to me.

      I love doing what the universe had in store for me. Looking back it couldn't have worked out better. It worked out for me, but it doesn't always work out. We are instrumental in moving our lives forward.

      It's important that whatever happens to us, those responsible in our lifetime take responsibility. It's us that end up having to take responsibility.

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