Purpose To investigate the changes in basic life conditions over time from the perspective of female patients with systemic lupus erythematosus (Lupus). This presentation concerns experiences around the diagnostic phase of Lupus.

Method From 2013 to 2015, 43 individual interviews were performed with 15 female patients. Data were analysed according to the methodology of Human Science Phenomenology, which aims at collecting a common meaning-structure of human experiences. By considering basic condition of time, space, body and relationships, deeper knowledge of patient experiences can be reached.

Results Mean age was 45.6 years and mean disease duration 14.8 years. The time to diagnosis after the first symptoms varied from 2–54 months (mean: 21 months, SD: 16 months). The essential experience of going through the diagnostic phase was found to be in a Standstill-in-life constituted by three existential themes:

1. The experience of an altered perception of time and space while being exposed to the many medical examinations and tentative diagnosis situated the patient in a passive stance while waiting for clarification.

2. The acute or changing symptoms made daily life uncertain as the normal bodily reliance changed and interpreted as standing on an uneven ground.

3. Having the final Lupus diagnosis represented a deep existential change in personal relationships with self and others, and marked a substantial turning point in life.

Conclusion The diagnostic phase of Lupus is often protracted over several years. This study shows how going through the diagnostic phase initiates a significant change in the basic life conditions. The phase represents a demanding existential situation. Support through the diagnostic phase, by considering the patient’s existential challenge and incorporate this in rehabilitation programmes would emancipate patients through a demanding time and be a novel contribution to patient support.