Navigating Lived Experience Roles: Creating Impact in Challenging Spaces

Lived experience roles can create profound change while also presenting unique challenges. People with lived experience bring invaluable perspectives to organisations, but often face systems that aren't designed to support them effectively.

The power imbalance

Let's be honest about something that often goes unsaid: there's an inherent power imbalance when you take on a lived experience role. You're making yourself vulnerable by sharing personal experiences in professional contexts, often within organisations that haven't adequately prepared for your arrival.

What I've observed time and again is organisations hiring lived experience professionals without properly considering how these roles integrate into existing structures. This approach sets people up to struggle rather than succeed.

Add to that, organisational systems and leadership that haven’t implemented a trauma-informed approach to safely, or effectively create a container where the people in lived experience roles (or broadly, the people with loved experience within the organisation) are likely to succeed without retraumatisation.

Before you accept a lived experience role

When considering a lived experience role, investigate the organisation thoroughly:

How do they treat their employees across the board? If they offer the worryingly standard three free EAP sessions and some mediocre e-learning, that's a red flag about their commitment to psychological safety.
Is this a genuine role with real potential for impact, or are they simply meeting a KPI or landing a requirement for a contract?
Have they trained the managers who will supervise lived experience roles have trauma-informed approaches and an active practice?
Are there other people in similar roles whose experiences you can learn from?

Creating change within the system

For those already in lived experience positions looking to create meaningful change:

Focus on leadership development: Get involved in what leadership learning looks like in your organisation. Is trauma-informed leadership included? Is authentic leadership valued?
Hold organisations accountable: When marketing materials claim trauma-informed approaches but practice shows otherwise, speak up (when safe to do so).
Build psychosocial safety where you can: Even in challenging environments, you can create safer spaces within your immediate sphere of influence.
Know when to step back: Remember that people in lived experience roles cannot solve organisational issues alone. The organisation must take responsibility for creating systems where lived experience can thrive.

Protect your wellbeing

Perhaps most importantly, protect your own wellbeing. Lived experience roles are inherently demanding, often requiring you to revisit difficult experiences while navigating complex organisational politics.

There's no shame in walking away from an organisation that hasn't created the conditions for your success. As I often tell people considering their options: be selfish. You can't effectively help others if you're being treated poorly, and sacrificing your own wellbeing for an organisation that’s not making an effort is a frustrating and futile exercise.

Remember that there are organisations and leaders doing this work well. If you're in a place that's causing harm rather than enabling positive change, make it your mission to find somewhere that values your contribution appropriately.

The organisational responsibility

Ultimately, the success of lived experience roles largely depends on organisational leadership taking responsibility. Organisations must design systems that enable these roles to succeed, training managers appropriately, creating psychologically safe environments, and integrating lived experience perspectives throughout their operations.

When organisations genuinely commit to these principles, lived experience roles can transform services and create meaningful change. Until then, those in these positions must advocate for better conditions while protecting their own wellbeing.