Abstract

Although headache is considered a frequently experienced type of pain, the challenges, experiences, and perceptions of people suffering from chronic headaches are poorly understood. The aim of this study was to gain subjective information regarding these aspects in daily life, in order to answer the research question "What is life like with a chronic headache?" Semi-structured, in-depth interviews were conducted with 16 patients who suffered from chronic headaches. Five main domains were explored: emotions related to headaches; trauma/stressful events; behavioural changes, relationships, and coping mechanisms. Participants reported that pain restricted their lives in many ways, including not being able to work, loss of status, identity, freedom, intimate relationships and friends. The majority believed that psychological and/or physiological trauma was the reason for their headaches. New information that emerged from this study was how common life events not usually considered major traumas, initiated and maintained symptoms. Shame and feelings of stigmatization appeared to be strongly associated with chronic pain, leading to a scenario where thriving, contentment and enjoyment were often lacking. This study provided an in-depth understanding of how chronic headache adversely affects the lives of sufferers. Chronic headaches restrict sufferers' lives, resulting in emotional and behavioural changes and a high level of disability. The complexity of chronic headaches in clinical practice is hugely underestimated, and poorly understood by society in general.

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