Rhiju Chakraborty
Research Mentor: Rachel Bergmans
Mentor Department: Health Equity Core, Chronic Pain & Fatigue Research Center, Department of Anesthesiology, Medicine
Author(s): Rachel Bergmans, Anushka Patil, Dominique Kinnett-Hopkins, Nezar Nahlawi, Nikita Sanghavi
Session: Session 3 (11:00 AM – 11:50 AM)
Presentation Type:
Abstract
Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that can present with symptoms ranging from mild to severe, life-threatening organ failure. Often diagnosed among women during reproductive years, SLE symptoms can be unpredictable and life changing, leading to high rates of disability, unemployment, and infertility. It is well documented that poor mental health—including anxiety, depression, and cognitive impairment—is disproportionately common among people with SLE. For example, the prevalence of depression in SLE may be 2.5 time greater than in the general population. Mental health and wellbeing are dynamically linked with SLE. Mental health refers to one’s overall psychological state, while wellbeing encompasses the ability to cope with daily stressors and maintain productivity in daily life. The pathophysiology of SLE can involve neuropsychiatric manifestations, and mental health conditions such as post-traumatic stress disorder and psychological distress are thought to increase both the risk of SLE incidence and symptom severity. Thus, strategies to promote mental health and psychological wellbeing may have a significant impact on SLE management. However, there is limited evidence regarding how mental health and wellbeing are experienced and addressed by individuals with SLE, which hinders the development of effective interventions and advancements in clinical practice. Given the considerable racial inequities in SLE in the United States and elsewhere, there is growing attention to the disproportionately high rates of poor mental health among Black individuals with SLE. These disparities stem from complex interactions between disease activity, racism-related stress, and socioeconomic adversity. Furthermore, research suggests that depression and other mental health concerns among Black individuals are likely overlooked in clinical settings. This is partly because rates of depression in the general Black population are often perceived as relatively low, while rates among Black individuals with SLE are equal to or greater than those seen in other racial and ethnic groups. Importantly, race operates as a proxy for social disadvantage rather than biological or genetic differences. By centering the experiences of marginalized Black adults, we can better detect gaps in patient experience and healthcare quality that might otherwise go unnoticed, informing strategies that benefit all patients. Despite this need, few studies have examined the nuanced experiences of how people with SLE manage mental health and wellbeing, and Black individuals remain underrepresented in this research. For example, even though patients value mental health services, significant barriers to care persist, such as stigma and lack of rapport with healthcare providers. Additionally, even during periods of symptom remission, the uncertainty of symptoms recurrence can cause ongoing mental strain. In this study we aimed to characterize how Black adults with SLE approach mental health and wellbeing—specifically to identify strategies for coping with psychological distress, and how mental health intersects with SLE management, disease severity, and life meaning.
