Digital Narratives of Living With Lupus: Lived Experiences and Meanings for Latin American and Latino Patients and Their Families

Abstract

Objective. Systemic lupus erythematosus (SLE) disproportionately affects Latin American and Latino populations, with worse outcomes compared to nonminority populations. Understanding patients' views is critical to provide culturally competent care. The objective of this research is to analyze lived experiences with SLE from comments made by Latin American and Latino patients, and their relatives and friends, on the public Facebook group "Hablemos de Lupus" (in English: "Let's Talk about Lupus").Methods. Deidentified narratives posted as a reaction to the most popular resources shared by the page were extracted using the Facepager application. We conducted a thematic analysis under an interpretative medical anthropology framework.Results. Five core themes were demonstrated by social media comments: lived experiences with lupus, religious/ spiritual thoughts, metaphors, heredity, and experiences of family and friends. Being diagnosed with lupus is perceived as a life-changing event. The fluctuating course of the disease causes uncertainty, and the perception of invisibility within the patient's social circle generates feelings of being misunderstood. Faith and spiritual thoughts are coping strategies. Patients use metaphors about the disease's meaning and their lived experiences (the purple butterfly, not belonging, bellicose metaphors) to communicate with others. Relatives and friends are impacted by their loved one's distress.Conclusion. Patients perceive lupus as an unpredictable illness and use metaphors to foster empathy and communicate their experiences to others. Religion is as important as medical treatment to cope with the disease, and the experience of having lupus extends to family and friends. Findings can be used to improve physician-patient communication and lupus education campaigns in the Latin American and Latino population.

Evaluating the Disease-Related Experiences of TikTok Users With Lupus Erythematosus: Qualitative and Content Analysis

“…Our sample had high symptom burden and frequently described how musculoskeletal symptoms and fatigue were interfering with daily functioning. TikTok users did not always feel that others understood these symptoms, leading to feelings of isolation and the thought that they have an “invisible illness.” These ideas have been described in numerous qualitative analyses on LE [ 3 , 7 , 24 , 31 , 36 , 41 - 43 ]. Even so, overall, TikTok users demonstrated robust social support systems made up of friends, family, and partners.…”

“…Social media is underused in the qualitative research of individuals with LE. To our knowledge, only 2 thematic analyses have been conducted using LE-related content on social media forums, including an analysis of comments on an LE Facebook group and an analysis of LE-related Twitter (since rebranded as X) posts [ 6 , 7 ]. Qualitative research using social media is important because it captures individuals who are understudied in typical qualitative research because social media users represent a nonclinical sample and thus may have varied experiences with, and accessibility to, health care [ 8 ].…”

Global excellence in rheumatology in Latin America: The case of systemic lupus erythematosus

“…It has also been useful to conduct quantitative and qualitative patient-centered research to advance our understanding of patients’ beliefs, healthcare needs, and the challenges in managing their disease ( 76 – 81 ). Let’s Talk About Lupus is the largest, and one of the most successful, online programs in Spanish and Portuguese that aims to educate and engage the LA population with lupus.…”

Beyond Empowerment in Rheumatology Care

“…Significantly, patients with rheumatic diseases often experience a sense of invisibility and invalidation due to the characteristics of their conditions, contributing to stigma and isolation. 13,14,15,16 Therefore, recognition and acknowledgment must also come from the patient's family and care network. In addition, providers should make an effort to validate the experience of disease on the patient's terms throughout its course.…”