In the in between of mental health, lived experience and academic or clinical expertise are often set against each other, despite both trying to make sense of the same human reality.
There is a particular kind of tension that comes with standing between lived experience and academic expertise. I’ve felt it in classrooms, community forums, and policy conversations about mental health moments when academic language meets the everyday realities of people navigating overstretched systems, stigma, and remarkable resilience.For so long it felt wrong for me to admit I sit in the in between. How could I? It felt like I needed to pick a side.
Lived experience gives us the emotional texture of life: what it actually feels like to wait hours in a clinic queue, to debate whether disclosing distress will change how neighbours treat you or to depend on informal support networks because professional help is distant, costly, or intimidating. These experiences are intimate and often invisible in national statistics.
Expertise, meanwhile, offers something different but equally necessary: theories that explain patterns, ethical frameworks that protect participants, research designs that allow findings to travel beyond one village or one clinic and data that can persuade policymakers and donors.
Being “in-between” means carrying both worlds at once;learning the grammar of research while refusing to abandon the messiness of real life. It is a position that demands translation: between stories and spreadsheets, between emotion and evidence, between communities and institutions.
What Lived Experience Contributes
Lived experience often captures what never quite fits into surveys or policy documents the words people use for distress, the workarounds families invent, and the quiet barriers that keep someone from seeking help.
One of the most significant global efforts to shift mental health research beyond tokenism is the Lancet Psychiatry Commission on lived experience in mental health research, which explicitly argues that “lived experience is not a box to tick: it’s what breaks out of box‑ticking to focus on what really matters.” The Commission, co‑led by Traumascapes and the Service User Research Enterprise at King’s College London in partnership with the ESRC Centre for Society and Mental Health and supported by Wellcome, aims to reflect on the history and evolution of lived experience involvement, assess what is known and where gaps remain, establish guiding principles, explore differences and debates, and provide recommendations for advancing the field.
By centring people with lived experience at every stage, from shaping questions to influencing recommendations, this initiative demonstrates how expertise and experience can work in partnership to transform how research is designed, conducted, interpreted, and applied to inform policy and practice.
In Kenya, for example, people frequently describe emotional strain in everyday language like “overthinking” spiritual imbalance, or pressure tied to family responsibilities. These are not casual phrases; they shape whether someone goes for counselling, talks to a faith leader, relies on relatives, or stays silent. Language can act as a doorway into care or a wall that keeps services at arm’s length.
While Kenya’s national mental health frameworks formally include people with lived experience and caregiver organisations in policy design and evaluation, these commitments have yet to translate into equitable influence over budget decisions, priority-setting, and programme design, a gap reflected by the fact that mental health occupies roughly 0.01 % of total health expenditure.
Across the mental-health field, lived experience is increasingly valued but defining it is complicated. Who counts as having lived experience? Does it mean someone with a clinical diagnosis? Someone who has struggled but never accessed formal services? Caregivers? Community health volunteers? Survivors of systemic harm? Experts, NGOs, researchers, and advocacy groups often set these definitions, which vary depending on project goals, funding requirements, or local context.
This is why lived experience can be both powerful and contested. If definitions are too narrow, many voices are excluded. If too broad, the term risks losing meaning or being misused. Some organisations, intentionally or not, invite people with lived experience to panels or projects symbolically asking them to share personal stories but excluding them from shaping decisions, budgets, or research priorities. Advocates often call this ‘tokenism’: presence without influence.
There’s also a risk of oversimplification: no single person can represent all people with a certain diagnosis, from a community, or across a region. Each experience is shaped by culture, resources, family, and context. Responsible use of lived experience requires acknowledging its limits, diversity, and internal disagreements.
For those designing programmes or studies, the questions are unavoidable: Who is considered an expert by virtue of lived experience? Who gets to define it? And what authority do these people actually hold once they are involved?
From where I sit, lived experience does not replace evidence it reshapes what evidence should look like, whose questions matter, and which realities deserve attention. It is messy, contested, and sometimes hard to define but precisely for that reason, it is indispensable.
As highlighted by a 2025 review in PMC Global Mental Health, people with lived experience do more than share narratives,they shape research questions, programme design, and even policy decisions.
What Expertise Brings
If lived experience provides texture, expertise supplies structure.
Research methods, ethics committees, monitoring frameworks, and analytic tools exist for a reason. They protect participants, minimise harm, and make it possible to draw conclusions that extend beyond a single case. They help turn many stories into patterns that policymakers can act on.
Expertise also opens doors to resources. Grant proposals, evaluation reports, and cost-benefit analyses may not stir the soul, but they often decide whether programmes survive or disappear. Institutions frequently speak the language of metrics and models; technical skill allows lived realities to enter those spaces.
When deployed thoughtfully, expertise does not dilute experience it amplifies it, translating community concerns into the formats decision-makers understand.
Additionally, it outs expertise at a position to empower lived experience-with basic knowledge and language for them to feel confident speaking in rooms where their voices are most needed; because they know where it hurts most.
The False Divide
Despite this complementarity, lived experience and expertise are still too often placed in opposition.
Lived experience is labelled emotional or biased. Expertise is framed as neutral and authoritative. But anyone who has worked in research knows that data collection is shaped by human choices: which questions feel important, which communities are accessible, which outcomes funders care about.
Meanwhile, personal knowledge without analytical tools can struggle to influence systems built around reports and indicators. The divide is not inevitable. It is cultural, institutional, and importantly changeable.
Reflexivity in the In Between
Occupying the middle demands reflexivity: a continuous practice of examining how your background, training, and experiences shape what you see.
I find myself asking uncomfortable questions: Am I privileging stories that resonate with me? Am I interpreting silence too quickly? Am I assuming shared meanings where none exist?
Reflexivity is not about paralysis. It is about slowing down just enough to notice power dynamics before they harden into design choices, and assumptions before they become conclusions.
Why This Matters in NGO and International Work
In NGOs and international settings, programmes frequently falter not because evidence is absent, but because context has been misunderstood.
A behaviour-change campaign might be grounded in global research yet ignore household economics, caregiving burdens, or local trust networks. People with lived experience often detect these mismatches immediately: the meeting time that excludes mothers, the “free” clinic that still requires transport money, the poster campaign that clashes with community values.
Expertise then helps translate these observations into revised programme models, budgets, and monitoring systems that institutions can support.
This is where real change begins not at the expense of rigour, but through a richer version of it.
To live in the in-between is not to be undecided. It is to carry responsibility. It requires listening carefully, resisting easy binaries, and translating between worlds without flattening either. For me, it has meant learning when to speak from personal perspective and naming that subjectivity clearly and when to step back and let broader evidence guide the conversation. It also means rejecting the idea that one must choose between credibility and compassion.
Where Experience Meets Evidence
The true irony is how rarely lived experience and expertise are intentionally woven together from the start.
When they are, research becomes more humane. Programmes become more realistic. Policy debates grow harder to dismiss because they are rooted in both numbers and narratives.
That bridge between lived reality and analytical rigour is where sustainable social impact begins.
And for those of us who inhabit that space, perhaps the work is simple, if demanding: to keep both worlds in view, and to insist quietly but persistently that neither is complete without the other.
As an aspiring psychologist and passionate mental health advocate, I have seen the importance of having both perspectives, how they strengthen each other, shape research, inform programmes, and ultimately create change that is both humane and effective.
