The lived experience of postpartum depression and psychosis in women: a bottom-up review co-written by experts by experience and academics.

This is the first bottom-up review of the lived experience of postpartum depression and psychosis in women. The study has been co-designed, co-conducted and co-written by experts by experience and academics, drawing on first-person accounts within and outside the medical field. The material initially identified was shared with all participants in a cloud-based system, discussed across the research team, and enriched by phenomenological insights. The subjective world of postpartum depression is characterized by a sudden onset ("being hit with a ton of bricks"), unbearable loneliness and sadness that are often suffered in silence, inability to feel positive emotions, grieving over the loss of self, feelings of being bad mothers (haunted by a suffocating burden of guilt due to that), inability to concentrate, lack of control of thoughts ("feeling like a tightrope walker without control over thoughts and emotions"), insecurity (up to needing to be nurtured and mothered themselves), and thoughts of death ("contemplating death as a glimmer of hope to escape the living nightmare"). In addition to these themes, the subjective world of postpartum psychosis is characterized by difficulty in articulating thoughts ("feeling the brain in a centrifuge"); perceptual abnormalities and unusual beliefs disrupting the sense of personal unity (with, in a few cases, thoughts of harming themselves or their baby, so that women may feel that they are "sinking in the depths of hell"); losing trust ("ploughing through the fog and losing trust and safety"), and stripping down relationships. Much of the isolation, guilt and disorientation experienced in these conditions relates to sociocultural and family environments, especially a gulf between how women feel and a web of norms and expectations surrounding motherhood. In most cases, stigma is related to a lack of knowledge of what postpartum depression or psychosis are. Stigma and lack of knowledge are core drivers impacting health care in terms of seeking professional help, accessing mental health services, and receiving pharmacological or psychological treatments. The narratives described in this paper should inform clinical practice, research and public health education. This study brings voice to the unspoken and unheard, and fosters relational connections within which different mothering experiences may be expressed and understood. This is vital to challenging negative sociocultural attitudes towards postpartum depression and psychosis, and providing the most supportive care to women experiencing such pervasive psychiatric disorders at a critical, fragile time in their lives.