For decades, I lived with something fundamental that I didn't know about. I spent years covering, compensating, and adapting – placing a band-aid, sticking plaster, over the not-knowing of a disability. I learned to survive within the limits of uncertainty, masking what I couldn't explain, failing school and exams, and navigating a life shaped by unanswered questions. Beneath it all was a reality I had never been told about, a truth obscured not by my own unwillingness to see, but by the absence of recognition – but by the absence of recognition including those responsible for my care and from those closest to me.
Then came the moment of a life-changing diagnosis, cerebral palsy later finding out I had two limbs affected, and not one as originally diagnosed with – and a final diagnosis of mild cerebral palsy hemiparesis, when it was confirmed by a neuro physiotherapist that two limbs were affected and not one as originally stated in my notes from my first consultation as a child.
It was a revelation that redefined everything I thought I knew about myself. In finally receiving that diagnosis, I was confronted with clarity and grief for the first time – clarity in a name that came along with lifelong challenges, and grief for the decades I'd spent without the language, support, or validation to help me understand 'me.' But instead of continuing to stay masked – I chose to confront my trauma, my past. I ripped off the sticking plaster, however painful, and started to face my realities head on. I was left with no choice.
That moment became the first day of the rest of my life. My very late diagnosis to me didn’t diminish my appetite; instead, it reshaped my hunger for truth, my identity, and in doing so, slowly transformed the narrative. It has allowed me to reclaim my story, understand myself for the first time through knowledge, to finally learn and know the truth. It was from that personal knowledge that The CP Diary was born.
Yet alongside the empowerment over the decades has come numbness, followed by unease, anger and grief. Whatever the reasoning, there is undeniable upset and unease in understanding I wasn't important enough to be cared for. Knowing about yourself and your challenges is your birthright. Helping someone through their difficulties is a birthright. I should have been told about my challenges, rather than being left to confront those decades later alone. That delayed recognition carries loss – of time, validation, and opportunities for self-acceptance, and of understanding relationships.
Living with difference feels like I am someone else's problem.
Onto something sunnier. In May The CP Diary will be 16 years old, Through determination and continued research into my own history, I have now been able to set the record straight, to finally reclaim what was rightfully mine. Our journeys shouldn't be about painful discoveries, but if you're unfortunate enough to have to own the story, it eventually becomes 'a story of truth, resilience, and renewal.' It is your story. It sits in truth. Your story cannot be debated or argued with.
By confronting my diagnosis, through my writing, I have not only turned decades of silence into advocacy, but also into collective empowerment for those willing to see and confront their own journeys.
We all have the power inside of us to turn our fortunes around. I truly believe that.
It starts with being hungry for change.
Now my story is no longer defined by what was hidden, but by what has finally been uncovered and understood – and there is no need for me to apologise.
What's your story?
