I began engaging in lived experience work as a 15 year-old driven by a desperation to ensure no one else experienced the harm that I had faced within mental health systems. It was a time when lived experience involvement was increasingly growing traction across the mental health systems, appearing within advisory groups, co-production workshops and research projects. I was sold a compelling and persuasive narrative: our stories were needed, and they would lead to meaningful change.
By engaging in lived experience work, I have had to confront difficult questions: am I inadvertently complicit in the institutions that have harmed me? Am I betraying my community, which continues to be harmed by these systems? However, what has felt even more harmful than the original trauma I experienced at the hands of the system was the realisation that I could not change it, and in fact, that the stories I was invited to share were being shaped by and feeding back into the same systems that produced that harm.
I’ve come to see that this promise – of the potential to make change within the mental health system by sharing your experiences – sold to me at age 15 sits within something larger than a single organisation or a project. It reflects a broader system in which narratives are increasingly extracted, curated, managed, and circulated within systems that remain fundamentally unchanged. Stories are not shared neutrally. They are drawn out in ways that render them useful to the system whilst stripping away their capacity to disrupt them. As lived experience is increasingly positioned as essential, storytelling itself is prioritised at the expense of structural change. My story was moulded to serve and sustain the continuation of the system itself; the story of my life becoming a part of the machinery I set out to resist. I spoke my harms into systems structurally committed to maintaining those harms.
Within storytelling practices in the lived experience space, distress is often located within the individual rather than in the political and economic conditions that produce it. People are positioned as part of the problem, required to manage and improve themselves to function within the system. Structural harms are reframed as personal difficulties, and systemic failures are translated into issues of resilience, recovery or self-management. Lived experience narratives are mobilised as proof that the system is listening, rather than evidence that it is not working. They are absorbed into the maintenance of a system which keeps people functioning within harmful conditions rather than challenging why those conditions exist. Stories are used to sustain and validate existing directions, including regulations that discipline access to support, commissioning structures that prioritise cost efficiency over care, and eligibility frameworks that determine who is deemed worthy of support. This reflects a wider system shaped by neoliberal austerity, in which the withdrawal of state responsibility for welfare, housing, social care, and health is accompanied by an intensified focus on individual accountability.
Within this context, storytelling becomes a carefully managed practice used to generate moments of emotional impact without disrupting power. Conferences where audiences are moved. Workshops where there is reflection and applause. It allows people to feel good, without requiring anything to change.
Despite the language of co-production, decision-making authority rarely shifts. Instead, lived experience is positioned as something that must be handed over to the system; offered up to be interpreted, validated and governed by those already in positions of power. What is framed as collaboration or co-production often hides a dynamic where people with lived experience provide their stories, while institutions retain control over what counts as legitimate knowledge and how it is used. The process reasserts existing hierarchies, locating authority with those inside the system as rational and authoritative interpreters, while lived experience is positioned as subjective, emotional, and in need of interpretation. Lived experience is not recognised as knowledge in its own right. It requires translation by those with power.
Lived experience must be recognised as knowledge in its own right. This means moving away from extractive models of involvement, towards collective forms of organising in which people with lived experience have authority to shape services, policy agendas and research. It requires confronting the structural conditions that produce distress in the first place, rather than asking individuals to narrate their stories to systems unwilling to change.