Lived Experience is powerful: It also needs protection

Lived experience storytelling is powerful.

But it also carries responsibility.

Across media, charities, workplaces and education, lived experience storytelling has real impact.

It reduces stigma.

It challenges assumptions.

It helps people feel recognised.

It educates in ways theory alone cannot.

But there’s something we don’t always talk about.

These stories are not only shared to educate. They are also prepared with audience engagement in mind. To hold attention. To create emotional connection.

And that balance requires care.

Many organisations already think about responsible messaging and representation. Guidance is available on how conditions should portrayed. People with lived experience are used in shaping narratives or developing content. But safeguarding often focuses on the audience.

We also need to think about the person sharing. Because lived experience is not always something in the past.

For many of us, it is ongoing. Someone speaking may be managing symptoms that day. They may feel pressure to perform well. They may worry about forgetting points, saying the wrong thing, or becoming overwhelmed. They may be carrying invisible health factors that the room never sees.

I know this personally. I prioritise safety in every room I train or speak in. I hold space for difficult conversations and create environments where people feel able to engage honestly. But I also live with bipolar disorder, ADHD, functional neurological disorder, have had a mini stroke, and most recently been forced into surgical menopause after major surgery.

I manage these conditions to the best of my ability but they still bring long term cognitive effects, daily challenges, and symptoms that worsen under stress. There are days when my concentration dips, when I cut out mid sentence or struggle to find the right words, when cognitive load is heavier. And days when I am supporting others while actively managing my own capacity too.

This is the reality for many people who share lived experience publicly.

If organisations genuinely value these voices, support cannot stop at booking the speaker or planning the programme.

It needs to include:

• Realistic expectations

• Flexibility where possible

• Understanding that health can fluctuate

• Check-ins before and after sessions

• Respect for the person, not just the story

Because when we work with lived experience responsibly, we do more than share powerful stories. We model the compassion and understanding we say we stand for.

Understanding “what it is like to live with” goes far beyond a textbook. It brings the human reality into the room, where learning becomes something people feel, remember and carry into their practice.

Fliss Hoyle is the founder of Lived Experience Inspires and delivers talks and workshops sharing lived experience across education, workplaces and media.

If you would like to include lived experience within your education programme, organisation or event, you can find more information on the website or get in touch.