LIVED / LIVING EXPERIENCE
Drazen ZigiciStock
A PART OF ME
In her latest online briefing, April Wareham examines lived and living experience – and how to use them respectfully and responsibly. Here’ s a taster
Spend time in any space where people gather around a shared experience – a patient group, a peer support meeting, a forum, a food bank – and you’ ll hear the same rallying cry:
‘ I want to help people like me. I want to use my lived experience to make a difference.’
It’ s powerful. It’ s generous. But it’ s also worth pausing to ask: what is lived experience – and how is it different from living experience?
We all have experiences. Some pass quickly; others change us forever. The difference lies in whether an experience becomes part of who we are.
Take German measles( rubella). For many people born before routine childhood vaccination, it was a mild illness: a few days at home, perhaps a missed school trip. Something that happened, then passed.
For others – parents who lost babies through miscarriage or stillbirth, or people born with congenital rubella syndrome( CRS) – rubella was life-changing. CRS can involve hearing loss, cataracts, heart conditions and lifelong health complications. In these cases, rubella isn’ t a footnote in a medical history; it’ s foundational. It shapes identity. That’ s lived experience.
People with lived experience of rubella and CRS have used it to provide peer support, campaign for vaccination and raise awareness – making a lasting difference for others like them.
SAME EXPERIENCE, DIFFERENT IMPACT This distinction appears across health and social care. Two people can use the same service, for the same reason, and walk away with very different relationships to it.
Imagine two women diagnosed with breast cancer. Both undergo treatment. Both receive peer support. Both recover well.
One returns to work, resumes her hobbies, donates to the charity and wears pink in October. Breast cancer was something that happened to her. The other also returns to work – but volunteers as a peer supporter, speaks at conferences, fundraises and uses her experience to support others. Cancer becomes part of her identity and purpose.
Same diagnosis. Same support. One experience; one lived experience.
SO WHAT’ S LIVING EXPERIENCE? If lived experience is something we’ ve integrated into who we are, living experience is what we are still in the middle of.
We all experience things every day. But for something to become a living experience, it has to be central to how we currently navigate the world. Visiting a GP is routine for most people. For others, accessing healthcare is disproportionately difficult or absolutely critical. Negotiating appointments, advocating for care and managing symptoms may dominate daily life. That’ s living experience.
And here’ s the ethical challenge: people with living experience are often still dealing with crisis, diagnosis or treatment. Expecting them to take on regular responsibilities – facilitation, governance or service design – can be inappropriate or harmful. Most organisations rightly ask people to prioritise their own care first.
Peer support is where living experience shines. It’ s built on shared understanding: listening, sharing, showing up. Setting out chairs or making tea can be as valuable as formal roles.
When it comes to regular commitments – facilitating groups, sitting on panels or shaping services – most organisations sensibly wait until someone’ s living experience has settled into lived experience.
That doesn’ t mean current experiences of care aren’ t vital. They are. But they need to be captured carefully: surveys, optional workshops, feedback opportunities with no pressure to participate.
Organisations gain enormous value from lived experience. But with that comes responsibility. Too often, involvement is treated as binary: you’ re either in or out. When someone’ s health deteriorates, roles are removed abruptly – sometimes with devastating emotional and financial consequences.
For many, their lived experience role isn’ t‘ just volunteering’. It provides purpose, identity and community. Losing it can feel like being told:‘ You’ re no use to us anymore.’ We need more flexible approaches. Lived experience should be seen as a spectrum, not a job description. People may be able to do more at some points in their lives, and less at others.
For many, their lived experience role isn’ t‘ just volunteering’. It provides purpose, identity and community. Losing it can feel like being told:‘ You’ re no use to us anymore.’.
For those with lived experience who want to get involved: go for it, in ways that work for you. You will almost certainly make a difference. For organisations, the challenge is to enable that involvement in ways that are ethical, flexible and humane – recognising that the very thing that makes someone valuable may also mean they need ongoing care and support.
It isn’ t easy. But when it’ s done well, the benefits are immeasurable – for organisations, for communities, and for the people we’ re all trying to help.
Read the full version of April’ s briefing at workingwitheveryone. org. uk
WWW. DRINKANDDRUGSNEWS. COM FEBRUARY 2026 • DRINK AND DRUGS NEWS • 17