For the past 18 months, I have built quite a following in response to my work in advocacy, research involvement, and co-production in which I invoke my lived experience of suicidality and depression. But the more I step into these spaces, the more I realise a hard truth: lived experience is being commodified, controlled, and sometimes even weaponised.
The term “lived experience” is meant to uplift voices like mine. Yet, in many cases, it has become a tool for institutions to appear inclusive without challenging the status quo. It is tokenised as a box-ticking exercise, co-opted by organisations that want to look progressive but lack real commitment to genuine change. At worst, it is exploitative: people with lived experience are often asked to share painful stories but are not given power, pay, or decision-making influence.
This blog will unpack three key limitations of the current lived experience movement and why it is time for a fundamental shift.
Who really owns lived experience?
There is a growing disconnect between those who have lived, raw experiences of mental ill-health and those who control the narrative in policy, research, and healthcare.
Many organisations define “lived experience” in ways that suit them, excluding voices they find too “challenging” or “unprofessional.” The result is a sanitised version of lived experience, one that is easier to market and package within institutional frameworks. Those of us who refuse to conform to these neat categories often find ourselves pushed to the margins or worse still, ignored at the most important parts of the Ladder of Co-production which are the ‘producing and designing’ of services, despite being the very people these systems claim to include.
It raises an uncomfortable question: who truly owns lived experience? If it is constantly mediated, edited, and filtered to fit institutional needs, then does it still belong to those who lived it? Or has it become another tool of gatekeeping?
Industry labels and the problem of regulation
A LinkedIn poll I ran recently asked which term best represents those in the mental health and suicidality space. The responses were mixed, which begs the question, who came up with these labels in the first place?
The term “lived experience” has philosophical roots, but its modern use in mental health lacks clear regulation. I initially called myself an LXP (Lived Experience Practitioner) but later preferred LXA (Lived Experience Advisor). The reality is, these roles are self-defined, leaving room for inconsistencies and tokenism.
With no universal standard, organisations shape these terms to fit their needs, sometimes sidelining the voices they claim to include. If lived experience is truly valued, we need accountability, fair recognition, and meaningful inclusion, not just new titles. Otherwise, we risk diluting its power and impact.
The burden of representation
Lived experience practitioners are often expected to relive trauma repeatedly, much like we do when engaging with mental health practitioners, yet there is little emotional or financial support for doing so. Many of us are invited to share our stories at conferences, in research projects, and within policy discussions, often for free or for a token honorarium that does not reflect the true emotional labour involved.
Beyond the lack of support, the reality of working in these spaces can be isolating, exhausting, and retraumatising. The weight of representing an entire community falls on a handful of individuals, who are often expected to be spokespeople for experiences that are deeply personal and varied.
Additionally, there is an assumption that people with lived experience will automatically agree with each other or form a “unified” community. This erases the reality that our experiences are not monolithic, and that healthy, constructive disagreement should be part of the process. Instead, dissenting voices are often sidelined, reinforcing the very exclusion that lived experience initiatives claim to challenge.
From inclusion to exploitation
The NHS, charities, and research institutions increasingly “professionalise” lived experience, but without instating proper structures, learning, fair pay, or pathways for career progression. The result is a troubling paradox: we are included but disempowered.
Lived experience voices are invited into rooms but are we truly heard? We are asked to provide insight, yet the final decisions still rest with those in traditional power structures. It is an ‘illusion of inclusion’ rather than meaningful engagement. Worse still, the expectation that we will perform our trauma for the benefit of these spaces without tangible support turns inclusion into a form of exploitation.
This issue is particularly stark when looking at racial disparities within the lived experience space. Black and minoritised individuals often face additional barriers to recognition, are paid less (or not at all), and have their contributions dismissed more readily. True inclusion would mean dismantling these inequities, not perpetuating them under the guise of progress.
Reclaiming lived experience
So where do we go from here? How do we reclaim lived experience from those who have co-opted it for institutional gain?
First, there needs to be accountability. Institutions that claim to centre lived experience must be held to higher standards, whether through transparent policies on fair pay, emotional support mechanisms, or genuine power-sharing structures.
Second, we need to create our own spaces. While it is tempting to keep knocking on the doors of institutions that have historically excluded us, there is power in building alternative models that are truly community-led: grassroots initiatives, collective action, and independent advocacy work can often achieve what traditional systems refuse to.
Finally, lived experience must be valued beyond storytelling. We are more than our trauma. Our insights should inform decision making at every level, not just as personal anecdotes but as a legitimate form of expertise.
As the driving force behind Project Soul Stride, a citizen research initiative investigating Black suicidality, I have experienced first hand both the power and the limitations of lived experience. I have worked across research, advocacy, and mental health policy, yet I still find myself questioning: who benefits from our lived experience? And how do we ensure that it is not just heard, but acted upon?
The lived experience movement is at a crossroads. We can either allow it to be diluted into another form of institutional tokenism, or we can demand more accountability, more inclusion, and ultimately, more power. The choice is ours to make.
The Limitations of Lived Experience
This blog is part of our “The Limitations of Lived Experience” series which was open for submissions from NSUN members in January 2025 and published from February 2025. All the blogs in the series are available here.