AbstractAimTo explore from the perspective of women the nature of basic existential conditions while living with systemic lupus erythematosus.BackgroundSystemic lupus erythematosus has an unpredictable disease course and is documented to cause an existential rearrangement of life. The significance of changes in existential conditions and related experiences are unclear in the context of nursing and women with systemic lupus erythematosus.DesignA qualitative design guided by Van Manen's hermeneutic‐phenomenological methodology.MethodIndividual in‐depth interviews with 15 women diagnosed with systemic lupus erythematosus and of various ages, disease durations and severities were undertaken from September 2013 ‐ October 2015. Data were analysed following van Manen's phenomenological approach and using drawing as an interpretive tool.FindingsThe main existential experience was interpreted as a person “moving with the waves of systemic lupus erythematosus” constituted by the themes “oscillating between presence and absence of systemic lupus erythematosus,” “recognizing space and bodily possibilities and limitations” and “being enriched through relationships and activities.” When systemic lupus erythematosus was flaring, well‐being was threatened and a laborious time to escape the feeling of a setback‐in‐life persisted long after the disease was medically under control.ConclusionDaily life with systemic lupus erythematosus is conditioned by a prominent need to be in existential motion, related to the absence and presence of systemic lupus erythematosus. The experience of a setback‐in‐life by illness might challenge well‐being and indicates that periods of disease flares or disturbing symptoms are critical time points to provide support.