Arthritis Consumer Experts (ACE) and Lupus Canada have released Part 2 of the National Survey on Lupus in Canada, a special edition of JointHealth™ insight examining how lupus affects mental health, reproductive health, sexual health and intimacy.
While lupus care is often focused on disease activity and medications, Survey respondents described major challenges that are often left unaddressed in routine care, including anxiety, depression, pregnancy decision-making, relationship impacts, fatigue, pain, and changes in intimacy and body confidence.
The findings reveal a consistent pattern of unmet needs:
- Four in five respondents (80%) reported experiencing anxiety, depression, or insomnia related to their lupus.
- Nearly one in four respondents did not receive reproductive health guidance from their health care providers, despite wanting the information.
- Only 21% reported that lupus had no impact on their sexual wellbeing, showing that intimacy and relationships are significantly affected for many people living with lupus.
Respondents described managing flares, fatigue, pregnancy complications, miscarriages, anxiety, relationship strain, and social isolation, often while navigating care gaps and limited access to mental health support.
The report concludes that mental health, reproductive health, and sexual health are not “extra” concerns, but essential components of patient-centred lupus care that should be integrated into routine clinical practice with more proactive conversations between patients and health care providers.
ACE thanks every Survey participant who shared their experiences to help improve lupus care, advocacy, and awareness in Canada.