We all carry narratives within us: stories about who we are and the life that we’ve lived. They shape our identity and influence our sense of place in the world. When these stories are our own, they can be empowering. But when they have been written by other people, the very opposite can be true.
For most of my life, I have lived under the shadow of other people’s narratives about me and my illness. They have been woven so tightly into my heart and mind that, for the most part, I never even realised they were there. I accepted them as an objective truth and on some level believed that my illness must be my fault. Even though part of me recognised this to be untrue, other people’s words and perceptions ultimately determined everything I thought I knew about myself.
One of the reasons why I’ve been quieter here this year is that I’m working on unpicking the false narratives that have shaped my life. Improvements in my health have allowed me to begin confronting all that I’ve been through these past thirty-four years. Physical pain leaves lasting scars, but perhaps the deepest wounds are those that come from being held responsible for that suffering.
As part of a long process of understanding, and with appropriate professional support, I’m writing my own account of what happened during the bleakest years of illness and medical mistreatment. It’s a story I’ve been too ill to tell until now, with the exception of carefully curated snippets, but one that has been hidden within me for most of my life. I don’t yet know whether what I am writing will ever be seen by anyone else. But its importance can never be overstated.
For most of my life, I have lived under the shadow of other people’s narratives about me and my illness. They have been woven so tightly into my heart and mind that, for the most part, I never even realised they were there.
Through it I am starting to see how other people’s stories took root within me when I was at my most vulnerable. I was taught that my experience of my own body was not to be trusted; that I might have believed myself to be in agonising pain, but that such signals must be disregarded. I was told that I was unable to move or speak because I had given up; that I wasn’t getting better because I lacked motivation and wished to hide away from the world. These became the narratives around which my entire sense of self was built.
Many reading this will carry similar stories about themselves, often without truly realising it. In my case they came from medical professionals – doctors, nurses, physiotherapists, psychotherapists – but for other people the list will include family and friends. Even the most well-meaning of onlookers can unintentionally promote the idea of willpower as a means of overcoming illness. And for all of us, there is the additional influence of society and the media, with their emphasis on the sick and disabled as a drain on resources. It can be hard to escape the message that we must try harder. Do better. Make an effort to be less demanding.
The resulting sense of failure can manifest in endless ways, forming the foundation of daily life and coming strongly to the fore on occasions of particular significance. Christmas and New Year are two such examples, with their emphasis both on celebration and personal reflection. Being too ill to partake in festivities can feel like a personal failing, as can looking back on a year that might have seen little or no change for the better.
Sometimes it can help to stop and ask: Whose voice is really making these judgements? Who is it who made me feel that surviving another year of severe illness is anything less than remarkable?
Finally, after a lifetime of being lost in other people’s stories about me, I am hearing the words of truth that reside in my own heart
For me, the creation of fundamental mistrust of my own body and mind would have had far-reaching consequences at any age. But for it to have begun when I was still a child increased the impact dramatically. The repercussions have been more profound than I could begin to convey in a short blog post. But one day, maybe, I will share more.
What I can say is that, bit by bit, I am now starting to find the real me. A me that I have never had the opportunity to know before. A me that was, for so long, lost in other people’s versions of who I am.
In revisiting some of the darkest times of my life, I have been surprised. Buried beneath what I thought was failure, I have instead found a courage that astonishes the adult me. I’ve found a girl who endured the truly unendurable; who clung to life, even when it was the hardest thing she could have done. The very antithesis of giving up.
It turns out that nearly everything I thought I knew about myself was wrong, or at the very least badly distorted. Finally, after a lifetime of being lost in other people’s stories about me, I am hearing the words of truth that reside in my own heart. I am reclaiming the narrative of my life.
Thank you to everyone for your ongoing support of A Life Hidden. Even though I’ve not been present as much this year, I continue to receive visitors every day from all around the world. It’s always amazing to see the reach of my writing.
This can be a difficult time of year for so many. Whether you celebrate Christmas or not, I wish you peace and hope.
Image credit: Tomas Jasovsky on Unsplash
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A Life Hidden 