The lived experience of depression: a bottom‐up review co‐written by experts by experience and academics

Abstract

We provide here the first bottom‐up review of the lived experience of depression, co‐written by experts by experience and academics. First‐person accounts within and outside the medical field were screened and discussed in collaborative workshops involving numerous individuals with lived experience of depression, family members and carers, representing a global network of organizations. The material was enriched by phenomenologically informed perspectives and shared with all collaborators in a cloud‐based system. The subjective world of depression was characterized by an altered experience of emotions and body (feeling overwhelmed by negative emotions, unable to experience positive emotions, stuck in a heavy aching body drained of energy, detached from the mind, the body and the world); an altered experience of the self (losing sense of purpose and existential hope, mismatch between the past and the depressed self, feeling painfully incarcerated, losing control over one's thoughts, losing the capacity to act on the world; feeling numb, empty, non‐existent, dead, and dreaming of death as a possible escape route); and an altered experience of time (experiencing an alteration of vital biorhythms, an overwhelming past, a stagnation of the present, and the impossibility of the future). The experience of depression in the social and cultural context was characterized by altered interpersonal experiences (struggling with communication, feeling loneliness and estrangement, perceiving stigma and stereotypes), and varied across different cultures, ethnic or racial minorities, and genders. The subjective perception of recovery varied (feeling contrasting attitudes towards recovery, recognizing recovery as a journey, recognizing one's vulnerability and the need for professional help), as did the experience of receiving pharmacotherapy, psychotherapy, and social as well as physical health interventions. These findings can inform clinical practice, research and education. This journey in the lived experience of depression can also help us to understand the nature of our own emotions and feelings, what is to believe in something, what is to hope, and what is to be a living human being.

The lived experience of mental disorders in adolescents: a bottom‐up review co‐designed, co‐conducted and co‐written by experts by experience and academics

“…This study describes the lived experience of adolescents with a mental disorder, covering both their subjective suffering and their positive accounts. The co-designing, co-conducting and co-writing approach adopted by the study has already been detailed in previous publications 21,22 . This approach allows personal experiences of mental disorders to emerge, minimizing exclusion and misrepresentation of the affected persons' perspectives 149 .…”

“…In line with our previous publications [21][22][23] , the words written or spoken by experts by experience are reproduced verbatim in italics. Commentaries from participants in our collaborative workshops are anonymized as personal communications.…”

“…Commentaries from participants in our collaborative workshops are anonymized as personal communications. As previously indicated [21][22][23] , this study outlines the most paradigmatic ways by which mental disorders express themselves across the majority of experts by experience on a global scale. However, we neither assume that the reported experiences are exhaustive nor that they are systematically applicable to all young individuals or their parents and carers.…”

“…To fill this gap, we conducted the first bottom-up review of evidence on the lived experience of mental disorders in adolescents. The study was co-designed, co-conducted and co-written by junior experts by experience -representing different genders, ethnic and cultural backgrounds, and continents -and academics, refining an earlier method developed by our group to investigate the lived experience of psychosis and depression [21][22][23] .…”

Understanding depression beyond the “mind‐body” dichotomy

“…In this issue of the journal, two papers and a Forum deal, respectively, with the lived experience of depression 7 , with its multiple “physical comorbidities” 8 , and (in a critical vein) with “treatment‐resistant depression” and its management 9 . I think these contributions should be welcome by the scientific community, by people with depression and their families, and by the public at large.…”