Background The disease process in severe chronic obstructive pulmonary disease (COPD) is characterised by a gradual deterioration of health over time, and it involves a great deal of suffering for both patients and their families. Few studies describe the experiences of those who are very ill and living with advanced COPD from life-world perspective and how meaning is created in daily life.

Aim Illuminate how people with COPD experienced their everyday lives and created meaning, with focus on end-of-life.

Methods Fifteen Portuguese patients with COPD and long-term oxygen therapy were interviewed over a two-month period in 2014. The interviews were recorded, transcribed verbatim and analysed according to a method inspired by Ricoeur’s theory of interpretation.

Results The analysis resulted in three main themes: (i) Living with a frail body; (ii) feeling dependent in daily life; and (iii) struggling to carry on.

Discussion Participants described the implications of the phenomenon “living with COPD” as clearly limiting their living space, which had an important impact on daily life. Their descriptions were characterised by feelings of both social and existential loneliness. Despite limitations in living space and changed lifestyle, however, they also experienced happy times and a sense of meaningfulness that was often related to a feeling of belonging.

Conclusion The slow development of the disease leads to patients with long-term dependence on care. Their everyday life is characterised by a degree of uncertainty, which makes it difficult to plan the future and adds to their burden of stress.