Living with and beyond Cushing’s disease

Cushing’s disease is a rare endocrine condition caused by a benign hormone secreting tumour on the pituitary gland. By secreting Adrenocorticotropic hormone (ACTH), the tumour causes cortisol overproduction which leads to multiple physical and psychological symptoms including extreme weight gain, rounded face, skin thinning, depression and mood swings. Treatment for Cushing’s disease often involves surgical removal of the tumour and medical therapy to lower cortisol; however, symptoms and sequelae of the condition persist. Literature on the subjective experience of Cushing’s disease focuses on the impact of the condition on Quality of Life (QoL), and qualitative first-person research on lived experience is scarce.

The aim of this study was to shed light on the phenomenon of living with and beyond Cushing’s disease through an existential-phenomenological exploration and heuristic analysis of the embodied experience beyond treatment. Six female participants including the researcher took part in unstructured interviews that explored the lived experience of Cushing’s disease and framed these within the four dimensions of existence: physical, social, psychological, and spiritual. The findings of this heuristic inquiry demonstrate that Cushing’s disease is a multidimensional phenomenon felt across all four layers of human experience. Themes also highlight the temporality of the illness experience and findings have been presented under a spatiotemporal framework integrating a temporal world interwoven with the four dimensions of existence. Implications of this research on medical and psychological practice are discussed and it is argued that subjective first-person accounts of illness should remain central to ensure holistic care. The research concludes that embedding existentially and phenomenologically informed psychological support within multidisciplinary services would serve towards ensuring that care for Cushing’s disease patients addresses the totality of the illness experience rather than focusing solely on the functional impact of disease.