From Misdiagnosis to Meaning - Redefining Mental Health Through Storytelling

What happens when a mental health diagnosis changes—but the person’s lived experience does not?

This conversation explores misdiagnosis, identity, isolation, and the ongoing tension between individual and collective responsibility within mental health systems.

Dan begins by addressing a common misunderstanding. When people hear the word misdiagnosis, they often assume it means the person no longer experiences symptoms. For him, that was never true.

Throughout the entire process, he remained the same person, living with the same experiences. What changed was the language used to describe those experiences and the systems organised around that language. Yet when his diagnosis was revised, many people interpreted it as proof that he had been “cured.” Instead of clarity, the shift created confusion—and distance.

At the time, Dan did not feel able to correct those assumptions. The belief that misdiagnosis equals recovery left him feeling isolated rather than supported.

He reflects on how powerfully diagnosis can shape identity, especially during formative years. For two to three years, he had been building an understanding of himself through a particular diagnostic framework. When that framework disappeared, it felt as though a significant part of his identity disappeared with it.

Clinically, the intention was positive: “You don’t have this—go and be free.” But the reality was more complex. The diagnosis had provided structure, language, and a way of making sense of his inner world. When it was removed, it left a void. At the same time, the service supporting him ended, leaving him to navigate both the identity shift and the practical consequences on his own.

While identity changes are part of life for everyone, mental health adds another layer—particularly when experiences are intense and difficult to see reflected in others. Without shared language or community understanding, the shift can feel disorienting.

A central issue Dan raises is the absence of support structures for people who experience misdiagnosis. In a diagnostic medical system, once the label is corrected, the issue is considered resolved. The system closes the case.

But the internal process does not end there.

When his diagnosis changed, there was no structured support to help him process the emotional and relational impact. He notes that he was fortunate to have a therapist he trusted—someone who did not centre treatment around labels, but instead focused on his goals, daily life, and how he wanted to move through the world.

He contrasts this with many primary healthcare models, which tend to prioritise symptom identification and treatment application over long-term personal integration.

A recurring theme in the discussion is responsibility. Once treatment concludes or a diagnosis changes, the burden often shifts almost entirely onto the individual.

Dan acknowledges the value of personal responsibility. The experience led him to develop clearer language, a more accurate understanding of himself, and stronger self-care practices. These were meaningful developments.

However, increased self-reliance came with an unintended cost. As he became more capable of managing his mental health independently, his ability to navigate it relationally—with friends and family—declined. Without collective or relational support during the transition, he learned to carry it alone.

Major transitions—ending treatment, revising diagnoses—are rarely marked or supported within healthcare systems. There is little space to acknowledge how these shifts affect identity, relationships, and trust. Even a simple recognition from a GP or provider—naming the significance of the moment and offering time to talk—could change the experience. Without that acknowledgement, responsibility expands by default, often beyond what feels reasonable.

The conversation then turns to Dan’s current work in community programs and co-design. He emphasises that authentic co-design is not simply inviting feedback on pre-built solutions. It requires trust, awareness of who is in the room, acknowledgment of power dynamics, and a willingness to sit with uncertainty before outcomes are defined.

Many organisations struggle with this. Risk aversion, funding pressures, and the demand for measurable results can reduce co-design to consultation. When that happens, genuine collaboration is limited.

Peer support, he notes, offers an example of relational care at its best. It centres on shared experience and mutual understanding. Yet as peer support becomes increasingly formalised, he worries it may lose the time and relational depth that make it meaningful.

Looking back, Dan describes misdiagnosis as both destabilising and formative. It created confusion, isolation, and disruption. At the same time, it led to deeper self-understanding and has shaped the work he now does.

The discussion ultimately underscores a broader truth: mental health journeys do not conclude when a diagnosis changes or treatment ends. People continue to live, adapt, and redefine themselves. Recognising that ongoing process—and building systems that acknowledge and support it—remains an enduring challenge within mental health care.

Full Podcast: From Misdiagnosis to Meaning Redefining Mental Health Through Storytelling