Understanding pernicious anaemia: symptomatology and its impact on wellbeing and daily functioning

Purpose: Pernicious Anaemia (PA) is a chronic autoimmune condition that can significantly impair wellbeing and daily functioning. This study explored individuals’ experiences of PA symptoms prior to diagnosis and examined how they manage symptoms following treatment initiation. Methods: Participants with a diagnosis of PA were recruited to take part in semi-structured interviews (n=5). Data were analysed using Interpretative Phenomenological Analysis (IPA). Results: Three superordinate themes were identified: unexplained symptoms, pursuing support from healthcare, and adapting life to manage symptoms. Participants described prolonged diagnostic uncertainty, emotional distress, and misattribution of symptoms to psychological causes. Although treatment reduced symptom severity, participants often continued to experience fatigue, neuropathy, and cognitive difficulties; these ongoing symptoms prompted lifestyle adjustments and, in some cases, self-management practices such as non-prescribed injections. Conclusions: The narratives provide a rich description of a diverse range of symptoms attributed to PA. Symptoms had a long-term impact on individuals’ lives. Although treatment generally reduced the intensity of symptoms, the ongoing presence of symptoms continues to place limitations on functioning and daily living. The interviews revealed that patients had made significant adjustments to many areas of their lives to accommodate symptom fluctuations; this included reducing social activities, physical exercise and work commitments towards the end of their treatment cycle.