DUALITY OF LIVING WITH SYSTEMIC LUPUS ERYTHEMATOSUS: FLUCTUATING BETWEEN “GOOD DAYS” AND “BAD DAYS”

Rebeca Rosa De Souza,Hellen Pollyanna Mantelo Cecilio,Pamela Dos Reis,Sonia Silva Marcon,Mayckel Da Silva Barreto,Elen Ferraz Teston

doi:10.1590/1980-265x-tce-2020-0210

Abstract

ABSTRACT Objective: to learn the perception of individuals with Systemic Lupus Erythematosus about living with the disease. Method: an exploratory and descriptive research study, of a qualitative nature, carried out with 26 individuals undergoing treatment at the rheumatology outpatient clinic of a university hospital in southern Brazil. The data were collected in the period from February to July 2019, by means of semi-structured interviews that were audio-recorded and subjected to the thematic modality of content analysis. Results: a category entitled: “Fluctuating between good and bad days in living with Systemic Lupus Erythematosus”, composed of two subcategories that portray that living with Lupus is something unstable/fickle, emerged from the results. This is because, as a result of the periods of remission and exacerbation of the signs and symptoms of the disease, the patients experience a paradox of constant oscillation between ups and downs. Conclusion: it was learned that individuals with Lupus perceive that living with the disease is marked by an oscillation between good days and bad days, which are related to periods of remission and exacerbation of the manifestations of the disease, respectively.

Highlights

Systemic Lupus Erythematosus (SLE) is a chronic, autoimmune, rheumatic and inflammatory disease, in which the immune system becomes overactive, gradually attacking the normal and healthy functioning of the human body
This study aims to learn the perception of individuals with SLE about living with the disease
This is an exploratory and descriptive research study, of a qualitative nature, carried out with 26 individuals with SLE being monitored at the rheumatology outpatient clinic of a university hospital located in southern Brazil

Summary

Introduction

Systemic Lupus Erythematosus (SLE) is a chronic, autoimmune, rheumatic and inflammatory disease, in which the immune system becomes overactive, gradually attacking the normal and healthy functioning of the human body. It is subdivided into four types: discoid, drug-induced, neonatal, and systemic[1,2]. SLE can affect various systems of the human body, such as the immune, circulatory, nervous, cardiopulmonary, hematological and renal systems[2,3]. Fatigue and tiredness are frequent complaints when SLE is active[2,7,8]

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Conclusion