I used to believe that once I understood what was wrong with me growing up – once I finally had the answers about living with a disability – peace would follow. But the answers were difficult. They weren’t what I expected, and they weren’t the ones I ever thought I’d have to face.
After more than fifteen years of writing about my disability and sharing my journey toward understanding my disability, I’ve had to come to terms with something I never anticipated – making peace with not having peace.
For decades, I tried to understand why I experienced the world the way I did, never knowing I was growing up with a disability – even though my parents knew. Looking back, I can see how deeply that not-knowing shaped me: how it affected my self-image, my mental health, and the way I moved through life without realising there was even a story unfolding beneath it all.
Learning about my disability later in life has been painful and traumatic. Discovering and writing about my disability has given me a language for experiences I could never explain, but it has also given me a voice. It has also brought grief – for the years spent in the dark, for the self-blame that could have been avoided, for the understanding that came too late.
Writing about disability awareness has been an awakening. But learning to live with what I missed – and what I can never get back from not knowing – is something else entirely. That’s the part no one prepares you for: that understanding your disability doesn’t always bring peace.
Sometimes, it just brings truth – and learning to live with that truth is its own kind of trauma. Finding acceptance and self-compassion after such a realisation is harder still.
Some days, I understand myself better. Other days, I just feel tired – tired of the weight, the history, the way my mind has continued to carry the weight without a name and without the understanding. I keep waiting for peace to feel calm, but I'm beginning to see that's not what peace looks like.
Peace is being okay with the situation. It's a happier ending, one that quietens the mind, brings acceptance without further challenges. My situation has always been more complicated than that.
Peace should be the absence of struggle, the disbelief of what's done to me wittingly, is where my struggle is. I need to make peace with not having peace.
I need answers that haven't come from me – or at least not my answers – I sit in truth, not just mine and it's real. The truth is, with my parents gone, I can never have that conversation face-to-face and that's not good enough, but it is what I got.
Through writing, I’m slowly learning to live inside the space – the in-between, the unfinished. Peace isn’t always something we find. Often as I have learned to my cost, it’s something we end up having to build, piece by piece, out of the things that never quite fit.
Still, I keep writing – because each time I share more pieces of my story of living with an invisible disability, I find new meaning in what it means to heal without resolution, to learn to make peace with not having peace. I need space and time to heal.
