Living With Chronic Pain: Recognising Grief And Strength Through Patient-Led Action Research

Background: Many live with severe, disabling levels of chronic pain, accumulating pervasive life losses. Despite growing evidence that non-finite losses can lead to grief, scant literature connects chronic pain loss with expected grief trajectories.

Problem: Little specific vocabulary exists to describe the experience of losses in living with chronic pain. Few therapeutic interventions create awareness or support those in pain recognising and understanding their response to these losses.

Methods: Based in an Irish acute hospital Pain Management Programme, a patientinitiated collaborative project team created a narrative-based action research study, with focus groups and personal writing to explore themes of loss, grief and strength in living with chronic pain. Due to COVID-19 restrictions, the hospital-based clinical study has not yet progressed to implementation. Meanwhile, the patient-researcher used project methodology to analyse autoethnographic longitudinal data (email, WhatsApp).

Process: Through reflexive thematic analysis, patterns of grief characteristics were recognised throughout the data. Themes include a battle to face living with loss, the ensuing grief and a need to tell about it.

Results: Themes strongly correlate with grief models, grief assessments and the chronic pain literature, indicating that for the author, chronic pain has resulted in an ongoing experience of grief, including strength.

Conclusion: Significant overlap of the data with grief models and chronic pain literature suggests that others may also experience grief and strength in response to loss in living with chronic pain, warranting further research in this area.