It’s just one of them things you’ve got to try and manage – meanings of pain for people with brain injury

Lis Dreijer Hammond, Simon van Rysewyk, Chalotte Glintborg, Stephanie Kılınç, Giles Hudson

Abstract

Long-term pain is a common comorbidity for people with acquired brain injury. This chapter explores what it is like to live with those two conditions, focusing on the meaning for the individual. The meaning of pain plays a part in determining people’s emotional reactions and behavioural choices, and it is central for the process of psychosocial adjustment to a life with functional, social, participatory, and emotional challenges. Meaning is also closely linked to the identity changes that typically happen once people are faced with the challenge of living with long-term conditions. The field of positive psychology has contributed valuable insights into this process and the roles of benefit-finding, resilience, and post-traumatic growth are discussed. Two significantly different case stories are used as an illustration of life with acquired brain injury and long-term pain. One case, Julie, illustrates the process of adaptation and the other case, Mark, illustrates the challenge of dealing with pain issues when insight and pain perception has been changed by a frontal lobe injury. In both cases, the meaning of pain is integral to the meaning of brain injury. Neither Julie nor Mark consider themselves to have long-term pain, they live with the long-term impact of their brain injury, where pain is just one aspect. In fact, Mark’s altered pain perception causes him to claim that he feels no pain, yet it is nevertheless a challenge for him. The chapter concludes with clinical recommendations, calling for access to systematic, psychosocial rehabilitation that includes meaning-based approaches. A holistic rehabilitation model is proposed, suggesting that traditional medical and rehabilitation approaches need to happen within the context of psychosocial adjustment and rehabilitation, rather than expecting psychosocial adjustment to happen by itself, as a “by-product” of medical, physical, cognitive, and occupational interventions.

Keywords: chronic, long-term pain, acquired brain injury, meaning, purpose, and identity, psychosocial adjustment and rehabilitation, positive psychology, resilience and benefit-finding, post-traumatic growth

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