The Disagreeable Consumer

Lived and living experience can place many consumers in a vulnerable position as we contribute to improving health services. Often, individuals do not emerge as health advocates by choice; rather, we are propelled into this role by trauma and the profound pain we have experienced.

?My journey has been shaped by mental illness—I use the term "illness" because that’s what it was: I was ill, far from being remotely close to well. It is also marked by the challenges of having older parents—my mother would object to the label "elderly"—who face life-limiting illnesses. For example, my father, who passed away a decade ago, lived with dementia, Parkinson's disease, and multiple sclerosis. As a talented musician, his suffering was heart-wrenching, not only for him but also for my mother and me.

?Living with mental illness, specifically post-traumatic stress disorder, dissociative identity disorder, major depression, and substance abuse (now in remission), has been an incredibly painful experience. My conditions not only affected me; it also inflicted deep hurt on those around me. I am still navigating my own world, seeking forgiveness for the profound hurt I caused. It was never malicious; rather, I often reflect that my mental illness provided a complex context, not a blanket excuse.

?When health services approach consumers to participate in lived and living experience advisory committees or councils, I question whether they fully understand the journey that individual has undertaken to arrive at this point. It is not merely about traveling from one location to another; it encompasses the emotional toll and personal pain endured along the way. I often wonder about the depth of suffering that person may still be experiencing and what brought them to this moment. The fact that they are willing to share their pain in order to improve a system that many of us must navigate is profoundly significant.

?When I express disagreement with a system, it is not a personal attack (that’s never ok). If it feels personal, perhaps it invites reflection: do you identify too closely with the system, making it difficult to view it objectively? Does the system allow you to consider the perspective of a consumer seeking healthcare? We are not merely consumers; we are complex human beings embedded in deep layers and contexts.

?Disagreeableness can be a strength. Research indicates that challenging the status quo often leads to innovation and improvement.[1] The next time a disagreeable consumer challenges the system or interviews for a lived experience role, consider this: is this precisely what is needed? Are we too comfortable? Does our professional integrity demand the inclusion of voices that challenge us?

Embracing the perspective of disagreeable consumers not only improves the dialogue surrounding health services but also paves the way for more effective and compassionate care. By valuing the unique insights of those who have endured significant hardship, we can create a more inclusive and responsive healthcare system.

?With love,

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Richard and Havic

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[1] See for example; "The Innovator's Dilemma" by Clayton M. Christensen; “Originals: How Non-Conformists Move the World” by Adam Grant, "Why Innovation Matters" by Scott D. Anthony; and "The Status Quo Bias in Organizations" by David A. Garvin.