The Diagnostic and Statistical Manual of Mental Disorders, abbreviated as the DSM, is one of mental health care’s most commonly used classification systems. While the DSM has been successful in establishing a shared language for researching and communicating about mental distress, it has its limitations as an empirical compass. In the transformation of mental health care towards a system that is centered around shared decision-making, person-centered care, and personal recovery, the DSM is problematic as it promotes the disengagement of people with mental distress and is primarily a tool developed for professionals to communicate about patients instead of with patients. However, the mental health care system is set up in such a way that we cannot do without the DSM for the time being. In this paper, we aimed to describe the position and role the DSM may have in a mental health care system that is evolving from a medical paradigm to a more self-contained profession in which there is increased accommodation of other perspectives. First, our analysis highlights the DSM’s potential as a boundary object in clinical practice, that could support a shared language between patients and professionals. Using the DSM as a conversation piece, a language accommodating diverse perspectives can be co-created. Second, we delve into why people with lived experience should be involved in co-designing spectra of distress. We propose an iterative design and test approach for designing DSM spectra of distress in co-creation with people with lived experience to prevent the development of ‘average solutions’ for ‘ordinary people’. We conclude that transforming mental health care by reconsidering the DSM as a boundary object and conversation piece between activity systems could be a step in the right direction, shifting the power balance towards shared ownership in a participation era that fosters dialogue instead of diagnosis.
