Objective To explore patients’ thoughts of the onset of SLE and flares, and the relation to perceived health.

Methods Consecutively recruited adults with SLE answered: free written answers of ‘Do you have any thoughts of why you got SLE?’, standardises questions of SLE activity (score 0–10, 0= no activity), SLE health (score 0–100, 0=good SLE health), general health (score 0–100, 100=full health) and flares related to infection or physical trauma.

Results The study included 316 patients, mean age 48 years, range 19–87, mean disease duration 14 ±14 years. SLE activity was low to moderate (mean 4.2 ±3), perceived SLE health mean 34.7 ±25.8 and general health mean 62.9 ±21.2. The highest level of education was university education for 48% and high school for 37%. One third (n=102) answered that they had no idea/thoughts of why they got SLE, men (p=0.019), younger age (p<0.022) and lower educational level (p = 0.037) were more common in this group.

A majority (n=147, 69%) wrote one potential factor of why they got SLE, 53 patients (25%) reported two factors. The replies of why they got SLE were categorized into genetics (n=90), stress/trauma (n=72), infections/immunization (n=40), hormones/treatment (n=30), lifestyle (n=32), treatment/disease beside SLE (=31) and environment (n=5).

Patients in the category hormones/treatment had shorter disease duration (p=0.046), higher perceived SLE activity (p=0.018) and worse general health (p= 0.008) compared to those that had no statement in this category.

Only five patients reported environmental triggers and these perceived worse SLE health (p= 0.028) and worse general health (p=0.031).

Reporters of stress/trauma as disease triggers were women (p=0.030) and more had university education (p= 0.010) than those who did not report stress/trauma as a trigger.

Experiences of infection as a trigger of flares were experienced often by 36,1%, seldom by 19,0% and never by 39,9%. Flares induced by physical trauma were experienced often by 19,3%, seldom by 18,7% and never by 57,3%.

Conclusions Beside genetic factors, a prominent number of patients in this study reported stress/trauma or hormones as important triggers for developing SLE. In these groups perceived health and educational levels had different patterns.