POS1439-PARE WE STRIVE AND WE ARE BRAVE: A BOOK TO MEASURE THE IDENTITY AND NARRATIVE EPICENTERS OF PEOPLE WITH LUPUS
Authors: L. Athié, E. Calleja Macedo
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> Whoever receives the diagnosis of lupus becomes a patient with a chronic, degenerative, incurable disease of autoimmune origin. In addition, it begins the immersion in a sea of speeches that will forever shake the sense of existence. From this metamorphosis, the clinical reality and the territories in which his sick being will be registered reconfigure the way in which the person has been narrated. For this reason, the importance of knowing the stories that people make throughout the disease is essential to improve communication between doctors and patients. This document, converted into an editorial work, shows 98 testimonies of women and men who narrate their live and future with lupus in Mexico, Argentina, Chile, Guatemala, Honduras, the US, and Spain, from 12 to 65 years of age. <h3>Objectives:</h3> Know and make visible the way people describe their illness and the journey along the symptoms, before and after the diagnosis of SLE, in their various genders (Men and Women) and ages (from childhood to old age), through autobiographical writing, and the review of the self throughout life in healthcare and after the acceptance of SLE. <h3>Methods:</h3> Autobiographical narrative writing, critical discourse analysis and work with drawing and self-image. Personal approaches were used, in some cases; group work between adolescents and young people, mothers and fathers and families. All workshops and personal interviews were video and audio recorded. In all cases, the original language in which the testimony was verbalized or written was respected. The analysis and organization of all self-discourses were ordered according to the five stages of the disease. <h3>Results:</h3> Each story, gathered through interviews, calls and workshops, freely rides the waves of the greatest epiphany, which disrupts identities but does not dilute or drown them. The language of those who write this book is transformed into a speech of resistance. Theirs is a talk of war with which they tell the disease: You are not going to beat me. They rebuild, they are reborn, they move away from the patient they are supposed to be. The book is the result of a work of accompaniment, convocation, monitoring and individual and group interviews, which results in: a) 5 autobiographical descriptions of 98 people, which describe from feminine and masculine writing: The pre-diagnosis, the diagnosis, remission, lupus crises; b) The look of those who accompany a sick person; c) The 10 main needs required by patients from governments and society to guarantee a quality life. The document also offers the beginning of the compilation of the memory of the disease from the perspective of the person who suffers from it. Finally, the book begins with an introductory chapter written by Dr. Cristina Drenkard, Director of the portal "Let's Talk about Lupus", which explains, from a medical perspective, the challenges, characteristics and main treatments for people with SLE. <h3>Conclusion:</h3> The document allows us to observe when and how people with SLE transform their self throughout life. What are the stages that, from their own autobiographical testimonies, have helped them move forward. It also shows the community perspective, the power of support groups in the most critical stages of the disease, as well as personal references during critical periods such as the birth of a child, the abandonment of a partner, marriage, the culmination of a professional career, as well as dismissal or entry into a job, among some of the moments in the life of a patient with SLE. <h3>REFERENCES:</h3> [1] Bamberg, Michael, ed. (1997). Positioning between structure and performance. Journal of Narrative and Life History, 7(1–4), 335–342. <h3>Acknowledgements:</h3> This editorial document is the result of a series of works with patient groups, associations, as well as long-term interviews and meetings within the framework of doctoral research. The content is also the result of calls and seminars on memories and autobiographical narrative with people (patients, couples, sons and daughters, families, representatives of groups and associations; as well as young people and adolescents with SLE or related to a loved one with this disease). <h3>Disclosure of Interests:</h3> <b>None declared.</b>