Breaking the silence: Finding meaning in words
Author: Dr Snita Ahir-Knight (she/her), Rākau Roroa, is a Lecturer and Programme Lead for the Lived Experience education and research programme World of Difference | He Ao Whakatoihara kore within the Department of Psychological Medicine, University of Otago – Ōtākou Whakaihu Waka, Wellington, Aotearoa New Zealand. Snita is a trained child and adolescent therapist, and social worker. She has more than 15 years’ experience working in the not-for-profit, community, and mental health sectors in New Zealand and the UK.
In this third piece on my journey of openness, I explore an essential aspect of my experience: the words I use to describe my Lived Experience. I reflect on the terms I identify with and why I’ve chosen not to share specific details of my Lived Experience in this particular piece.
One of the most beautiful aspects of the Lived Experience community is the diversity of perspectives, which naturally brings a range of words. We each find our own way to express what feels real. For me, terms like ‘recovered from a mental disorder’, ‘living with madness’, and ‘having a brain that is wired differently’ resonate deeply. These words carry meaning in the story I tell about myself. Others in the community may not connect with these terms and use different words. That’s perfect. What matters is that we all find authentic ways to express our experiences.
Let me begin with ‘having a brain that is wired differently’. To me, it humanises my experience. It doesn’t label me as broken, but acknowledges that I perceive and interact with the world uniquely. This way of thinking shapes who I am, and I have come to recognise it as something complex, valuable, and a source of strength. I am different, and there is beauty in difference.
Next, ‘living with madness’. I’ve chosen to reclaim this word. For some, it may suggest instability or chaos, but, like others, I use it to rewrite that narrative. It is an act of defiance. A refusal to conform to rigid expectations of how I should think, feel, or behave. It means embracing who I am, unapologetically, even if it challenges ideas of ‘normal’. It reminds me to stand firm in my uniqueness and to resist being confined by others’ perceptions.
Stock image credit: Saad Chaudhry (dandelion a symbol of hope, strength and transformation, not being confined)
Lastly, ‘recovered from a mental disorder’. I recognise that in some environments, ‘mental disorder’ carries legal and medical meanings, but words depend on context, and they evolve. I describe a chapter of my Lived Experience as disordered to separate it from my identity. It doesn’t define me or mean I am flawed. Instead, it needed to be addressed. It represented a time when the conditions, environment, or circumstances I was living in prevented me from flourishing. Whether this was caused by society, relationships, or biology matters less than that it held me back from being my real self.
Does ‘recovered’ mean the disorder is gone forever? No. It still reappears, but recovery to me is not about complete eradication. It is about rising above it when it does surface.
Although the terms that resonate with me matter, I also respect the collective words of the Lived Experience community. In a Lived Experience group, I use words others identify with, even if they don’t fully align with mine. For example, terms like ‘mental distress’, ‘mental health condition’, or ‘mental illness’ may not be my preferred terms, but I value their significance for others. Respecting what feels right for everyone, without imposing my views, is part of my openness. For example, I lead a Lived Experience-led academic programme, and we collectively use ‘mental distress’. I could have pushed my preferred terms, but that would have ignored the group’s voice. We collectively use ‘mental distress’ because it feels relatable and highlights the many causes of our experiences. But I also hold onto the terms that feel real to my experiences.
You may have noticed that I haven’t shared specific details of my Lived Experience in this piece. For instance, I refer to a ‘chapter’ and mention ‘madness’ without explaining precise details. I’ve done this intentionally. My focus here is on the terms that resonate with me. Although the details of my experience matter, they are not the focus right now. For now, I want to share the words I use to understand and express my Lived Experience.
It’s important to be intentional about what I share and when. There is power in choosing which parts of our stories to reveal and when, and which to keep for ourselves. This practice of selective sharing allows me to own my narrative. I will continue to reflect on what feels right to share and how I best contribute to the Lived Experience conversation. By sharing my thoughts, I hope to promote greater understanding and encourage others to reflect on the words they use to describe their own Lived Experiences.