The lived experiences of woman navigating university with lupus and their primary support persons

Objective This study examined the lived experiences of women with lupus and their primary support persons to better understand the effects associated with navigating university/college with lupus. Methods Five women with lupus and five primary support persons ( n = 10) were recruited from Southern Ontario. One-on-one semi-structured interviews were conducted with participants. Reflexive thematic analysis was used to analyze verbatim transcripts. Results Two salient themes, (1) Lupus is a part of me , and (2) Lupus does not exist in a bubble , were identified, each with associated sub-themes. Lupus is a part of me discussed how lupus was part of participants everyday lives and how it became their new normal following symptom onset. Lupus does not exist in a bubble explored the ongoing challenges individuals and support persons experienced due to the lack of knowledge within healthcare, education, and society. Conclusions Women with lupus who are navigating university endure unique challenges in addition to school-related demands. Similarly, primary support persons who assisted throughout this navigation period encountered several individual and situational hardships due to the nature of lupus. Education for healthcare professionals, universities, and individuals with lived experience is warranted, along with more support services, to help navigate university/college more effectively.