OBJECTIVES: The impact of lupus on patients’ everyday lives is important to understand. We therefore investigated the perceptions of lupus patients on disease symptoms and coping strategies. METHODS: Participants (USA and Europe) completed a patient-led Internet-based questionnaire between April and May 2009. RESULTS: 914 respondents reported having lupus (95% female, 80% 20–50 years of age). The most common lupus symptoms reported were fatigue (92%) and arthritis, muscle pain/weakness or tendinitis (89%). Antimalarials were the most commonly used lupus treatment (53%), followed by corticosteroids (51%). Less than half of the respondents were satisfied/very satisfied with their current treatment (49%). Approximately one-third of respondents stated that lupus had a highly significant effect on their careers (37%), on their physical well-being (34%) and on everyday things (30%). Furthermore, approximately one-fifth of respondents felt that lupus had a highly significant effect on their social life (23%) and mental health (20%), while 11% reported it had a highly significant effect on their relationship with their family. Most patients reported talking to family (93%) and friends (89%) about lupus or sharing with them they had lupus (97% and 95%, respectively); 79% reported talking to others with lupus. 77% reported it was ‘easy/very easy’ to talk to their doctors about their symptoms. The most difficult symptoms to explain were depression (45%) and CNS problems (34%). The most helpful forms of support were understanding from family and friends (73%), ability to speak with healthcare professionals (63%), and being connected to other lupus patients via the Internet (50%). CONCLUSIONS: Lupus impacts greatly on patient’s everyday lives with the most common symptom reported being fatigue. Many patients remain unsatisfied with their treatment. Communication with family members, friends, healthcare professionals and other lupus patients are important strategies to facilitate coping with lupus symptoms.