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Lived Experience Panels & The Importance of Broadening the Narrative Around Eating Disorders

Networking and educational opportunities for professionals are a critical part of advancing areas of study and practice in healthcare. It is at these opportunities that care providers, families, and individuals can come together to share and learn from each other, often through presentations and lived experience panels.

This latter form of sharing has become more recognized as an important part of the conversation around eating disorders and other mental illnesses in recent years. This more inclusive focus, which recognizes the importance of collaborative care, allows us to continue to shift away from a patriarchal dynamic in therapeutic interactions, and empower individuals and families as being critical members of the healthcare team.

We have made a lot of progress towards more collaborative care and the valuing of lived experience as a form of knowledge. However, it is still important to reflect on how organizations and professionals may be shaping the narrative of eating disorders and recovery through the selection process for lived experience panels and patient participation opportunities. How do we decide (and who decides) which individuals lived experience should be showcased through panels, conferences, and other means?

Of course, it is critical to ensure someone is in a safe enough place that sharing their story will not cause greater harm to themselves or others. That said, what do we actually learn (and what do we perpetuate) if there is some degree of gate-keeping around whose story we deem acceptable to share? Where can we broaden the narrative of experiences in these events and learning opportunities? Where might we be biased in choosing those narratives that support our interests or our definitions of “recovery.” (e.g. programs we are connected with, therapies we practice, etc.)


The richest learning isn’t always in the sharing of past tense experiences - there is value in learning about the ongoing, still unfolding process of recovery. There is value in learning about the versions of “recovery” we might not know exist unless we broaden our horizons to include those stories outside our comfortable view of what an eating disorder and healing from that, can look like.

There is a risk in doing this of course, but there is also a rich opportunity for learning and advancement.

- S.

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