Using Lived Experience Ethically in Communications Work

TL;DR: Lived experience can strengthen mental health and recovery communications, but only when consent, dignity, and control remain with the individual. Ethical storytelling prioritizes people over narratives. 

Lived experience plays a powerful role in mental health and substance use communications. Firsthand stories can humanize complex issues, challenge stigma, and make abstract systems feel real. Used poorly, however, they can exploit vulnerability, flatten identities, and undermine trust with the very communities organizations aim to serve.

Ethical use of lived experience begins with consent that is informed, ongoing, and specific. Individuals must understand how their story will be used, where it will appear, and how long it may circulate. A one-time agreement is not enough. Circumstances change. Recovery evolves. What felt comfortable to share at one moment may feel invasive later.

Control matters as much as consent. Ethical storytelling allows people to define their own narrative boundaries. That includes what details are shared, what language is used, and what parts of their experience remain private. Communications professionals should resist the urge to edit stories for emotional impact if doing so alters meaning or agency.

Another common pitfall is reducing people to outcomes. Success stories often focus narrowly on sobriety, stability, or employment while ignoring the complexity of long-term recovery and mental health. This framing may appeal to funders or media outlets, but it can misrepresent reality and place pressure on individuals to perform progress.

There is also a power imbalance at play. Organizations control platforms, resources, and amplification. Individuals sharing lived experience may feel obligated to participate out of gratitude or fear of disappointing staff. Ethical practice requires acknowledging that imbalance and creating space for people to decline or withdraw without consequence.

Responsible use of lived experience also considers audience. Not every story needs to be public. Some narratives are better shared in closed settings, anonymized formats, or not at all. The goal should never be visibility for its own sake. It should be understanding, respect, and accuracy.

When done well, lived experience strengthens credibility. Audiences recognize when stories are told with care rather than urgency. Funders and journalists are increasingly sensitive to ethical concerns and respond positively to organizations that demonstrate restraint and judgment.

Ultimately, ethical storytelling is not about avoiding lived experience. It is about treating people as more important than narratives. When organizations center dignity, autonomy, and trust, lived experience becomes a source of strength rather than risk.

AI-generated image. Not representative of real individuals or events.