Lupus Ontario Patient Experience Survey: Medication, Treatment and Daily Life Impacts
Launched in late 2025, Lupus Ontario’s Patient Experience Survey gathered feedback from people living with lupus and their caregivers to better understand their experiences and challenges. The following highlights the key findings from Section 5 of the survey.
Key Highlights:
- Symptoms aren’t well controlled: Only 14.8% reported their lupus symptoms are well controlled.
- Lupus patients experience occupational, physical, and social challenges:
- 35.2% have left the workforce or transitioned to disability, and 60.9% experienced reduced income due to lupus.
- 54.7% are limited to low-impact physical activity.
- 60.2% reported becoming less social because of their physical health.
Living with lupus: How treatment shapes everyday life
Please find below the sixth article related to information gathered from the 2025/2026 patient experience survey. This article explores how lupus treatment and symptom management influence daily life, including employment, physical activity, and social well-being.
Treatment improves symptoms, but daily challenges remain
For many people living with lupus, treatment is about more than controlling disease activity—it is about maintaining patients’ ability to work, stay active, and participate in everyday life. While accessible medications and treatment plans help many individuals manage their symptoms, complete disease stability remains uncommon.
Insights from 128 survey respondents show that living with lupus often requires ongoing adaptation. Even with treatment, many continue to experience unpredictable symptoms that affect their careers, physical activity, and social relationships.
Most respondents continue to experience fluctuating symptoms
When asked how well symptoms are managed with their current treatment plan, respondents reported a wide range of experiences. The most common response was that symptoms are somewhat manageable (46.9%), while nearly one-third (32.8%) said their symptoms fluctuate from day to day.
Only 14.8% reported that their symptoms are consistently well controlled, while 20.3% described significant difficulty managing their disease despite treatment.
These findings demonstrate that although treatment can improve quality of life, many individuals continue to navigate uncertainty. Unpredictable flares and disease burden make it difficult to establish routines, plan activities, and maintain consistent participation in their career, family, and community.
Lupus continues to affect careers and education
The survey demonstrates that lupus remains a significant barrier to employment and education.
More than one-third of respondents (35.2%) reported leaving the workforce or transitioning to disability because of their condition. Nearly 60.9% experienced reduced income due to reduced work hours, career changes, or lost income. In addition, 7.8% of respondents reported missing classes or having to change the educational program they were enrolled in because of lupus, highlighting that the disease can also disrupt educational goals and future career opportunities.
Overall, only 25.0% of respondents indicated that lupus had not resulted in major changes to their work or education.
These findings illustrate that, even with current medications and treatment, lupus continues to have economic, educational, and professional consequences for many individuals.
Physical activity often requires ongoing adjustment
Remaining physically active is an important part of overall health, yet lupus frequently changes how people are able to participate in exercise and recreation.
More than half of respondents (54.7%) reported being limited to low-impact activities such as walking, stretching, or yoga. Another 28.1% remained physically active but at a reduced level in comparison to pre-diagnosis.
Meanwhile, 12.5% reported being unable to participate in physical activity, while only 10.2% indicated that lupus had not affected their activity levels.
These findings suggest lupus often requires individuals to drastically reduce their physical fitness activities in consideration of changing symptoms and physical limitations.
Social well-being is affected alongside physical health
The survey highlights that lupus affects far more than physical health. Many respondents described significant impacts to their ability to maintain social connections and relationships.
The most commonly reported challenge was becoming less social because of physical health limitations, affecting 60.2% of respondents. Nearly one-third (30.5%) reported being less social because of their mental health, while 29.7% said they feel isolated. More than one-quarter of respondents (26.6%) also reported strain within personal relationships.
Only 1 in 5 respondents (20.3%) indicated that lupus had not significantly affected their social lives.
These findings demonstrate that the emotional and social impacts of lupus often accompany the physical challenges of living with the disease.
Conclusion
The survey findings show that while current treatments help many individuals reduce symptom severity, living with lupus continues to involve ongoing uncertainty and adaptation. Most respondents reported that the disease affects multiple aspects of daily life, including employment, education, physical activity, and social participation.
The results reinforce that successful lupus treatment extends beyond symptom management alone. Improving quality of life will require a comprehensive, patient-centred approach that combines effective and accessible medical treatment with supports that address the physical, emotional, social, and occupational challenges experienced by people living with lupus.
Explore More Patient Experience Survey Findings
Read Section 1 – Diagnosis Summary
Read Section 2 – Disease Impacts
Read Section 3 – Impact of Lupus Flares
Read Section 4 – Caregiver Analysis