"A Personal Journey of Resilience and Hope: Lived Experiences of a Male Diagnosed with Systemic

Lupus Erythematosus"

Systemic lupus erythematosus (SLE) is an enduring autoimmune disease affecting multiple body
systems, with the potential to diminish the well-being of those who have it. SLE can have
repercussions on one’s capacity to work, interpersonal relationships, overall quality of life, and can
evoke apprehension about the future, as noted by Vaillant in 2023. Multiple studies have consistently
shown that fatigue is one of the most prevalent symptoms in SLE, which not only imposes limitations
and challenges on individuals but also significantly influences their quality of life. Even individuals
with mild or inactive SLE exhibit fatigue related to the disease, as observed in the study by Elefante
et al. In 2020. Furthermore, fatigue is often accompanied by other symptoms such as depression
(Azizoddin et al., 2019), anxiety (Du et al., 2018), sleep disturbances (Chiang et al., 2019), and stress
(Azizoddin et al., 2019).

A study conducted by Souza et al. In 2022 revealed that living with SLE is a challenging experience,
marked by periods of symptom exacerbation and remission, which can trigger emotions of fear,
distress, and suffering. Due to its rarity and initially vague symptoms, the time taken to diagnose SLE
can be prolonged, delaying the initiation of specific treatment and causing individuals to endure
general discomfort, emotional distress, and social isolation.

At the national level, research by Tabudlo and Tejero in 2023 demonstrated that participants felt
there were unavoidable physical limitations and environmental barriers related to fatigue and the
experience of multiple symptoms, closely tied to the concept of symptom perception, which involves
noticing changes in feelings and behavior.

There is a shortage of research addressing how the distinct challenges and psychosocial elements of
diagnosing SLE affect the personal experiences of men. This underscores the necessity for gender-
specific investigations to gain a deeper understanding of the emotional and social aspects of SLE in
male patients.

The current body of research predominantly concentrates on female SLE patients, resulting in a
dearth of gender-specific insights into how men diagnosed with the condition live through it. This
research gap is especially significant because studies have indicated that men with SLE often
encounter distinct disease courses, symptoms, and emotional difficulties compared to their female
counterparts. The distinctive social, emotional, and psychological facets of the SLE journey in men
have received insufficient attention.

PURPOSE OF THE STUDY

The purpose of this study is to explore and illuminate the unique lived experiences of a male
diagnosed with Systemic Lupus Erythematosus (SLE) in order to gain insights into the challenges,
coping mechanisms, and sources of hope that shape his journey of resilience. By delving into this
personal narrative, the research aims to contribute to a deeper understanding of SLE from a gender-
specific perspective and to provide valuable information for healthcare professionals, patients, and
their families, ultimately fostering a more supportive and empathetic approach to managing this
complex autoimmune disease.
Vaillant, A. A. J. (2023, August 4). Systemic lupus erythematosus. StatPearls – NCBI Bookshelf.
https://www.ncbi.nlm.nih.gov/books/NBK535405/