Happiness in Suffering of Systemic Lupus Erythematosus: Does It
Make Sense?
Ambar Sulianti, Wahyudin Darmalaksana, Dedi Sulaeman, Agus Abdul Rahman, and Sulasman
Sulasman
UIN Sunan Gunung Djati Bandung, Jl. A. H. Nasution 105 Bandung, West Java, Indonesia
Keywords: Hhappiness, well-being, Systemic Lupus Erythematosus.
Abstract: Systemic Lupus Erythematous (SLE) is an autoimmune disease in which the immune system attacks
connective tissue in the own body systemically. SLE cannot currently be cured but can be controlled with
the use of long term medication. The aim of this research was to explore and explain how people make
sense living happily with potentially life span and life-threatening health conditions of SLE. The research
design were mix of descriptive quantitative and qualitative study using semi-structured interviews that were
conducted from 14 SLE’s participants who own high subjective wellbeing. Constructivist’s grounded of
health psychology theories and religious cooping approach were adopted to analyse interview’s data. This
research demonstrated that even living with such SLE’s suffers, all subjects achieved well-being.
Mechanism of coping strategies that often used were turning to religion, seeking social support for
emotional reasons, and focusing on and venting of emotion, and also acceptance. The result showed that this
condition undergoes by gratitude feeling. Gratitude for family owned, the presence of others who have
helped, and grateful for positive events in their life have made subjects adapted and reconciled with the
disease. People suffering from SLE should acquire a grateful heart and a tongue of remembrance.
1 INTRODUCTION
Systemic Lupus Erythematosus (SLE) is an
autoimmune disease in chronic (chronic) connective
tissue, systemic, and the cause is unknown.
Autoimmune means that the immune system attacks
the body's own tissues. In SLE, the immune system
mainly attacks the cell nucleus, the body forms
various types of antibodies, including antibodies
against nuclear antigens (ANAs), causing damage to
various organs. chronic metabolic disease (Manger
et al., 2002; Petri et al., 2012).
This disease can affect various organ systems
with various clinical manifestations and prognosis.
Symptoms Lupus often is not specific, so the
sufferers often change doctors for different
diagnoses. Patients experience disruptions that affect
the quality of life and life expectancy is very low
(Cervera et al., 2003; Yurkovich et al., 2014).
The current management of lupus consists of
pharmacology and non-pharmacology.
Pharmacologic treatment is performed with non-
steroidal anti-inflammatory drugs, corticosteroids,
glucocorticoids, hydroxyclorokuin (antimalarial),
and immunosuppressant drugs. Non pharmacology
is done by administering sunscreen creams,
protective clothing from sun exposure, education,
social support, and physiotherapy. After a few years
the individual will experience intermittent
recurrence of the disease and repair, although not
total, organ damage, comorbidity, chronic
inflammation (Pego-Reigosa et al., 2013; Yap and
Chan, 2015). Clinical manifestations of SLE vary
widely in various organs including the heart, skin,
gastrointestinal, hematologic, neuropsychiatric,
blood vessels, lungs, kidneys, bones and joints. In
advanced stage, Lupus can cause bone death called
osteonecrosis. This can cause serious disability
(Greenberg and Michalska, 1999).
Although the prognosis of life expectancy of
lupus patients has increased over the past few
decades, the side effects of corticosteroid treatment
and immunosuppressant drugs (suppressing the
immune system) are still a problem. Side effects
arising from long-term corticosteroid administration
may affect various organs such as osteoporosis,
osteonecrosis, metabolic disorders, infections,
weight gain, mood disorders, and hyperlipidemia
(Ginzler et al., 2014)
64
Sulianti, A., Darmalaksana, W., Sulaeman, D., Rahman, A. and Sulasman, S.
Happiness in Suffering of Systemic Lupus Erythematosus: Does It Make Sense?.
In Proceedings of the 2nd International Conference on Sociology Education (ICSE 2017) - Volume 1, pages 64-68
ISBN: 978-989-758-316-2
Copyright © 2018 by SCITEPRESS – Science and Technology Publications, Lda. All rights reserved

In addition to the long-term effects of
immunosuppressant drug use, lupus affects the
psychiatric disorders of the sufferer. Based on the
study, up to 65% of lupus patients experience
neuropsychiatric symptoms one time in the course of
the illness (Bosma et al., 2002). Depression disorder
is a psychic disorder that is often encountered by
SLE patients (Chiewthanakul et al., 2012; S. et al.,
2015; Stock et al., 2013). One of the lupus disease
activities is characterized by psychological
disorders.
To provide support to SLE, an organization
called Syamsi Dhuha Foundation (SDF) was
established in Bandung in October 2003 by several
SLE observers. Activities include mentoring for
patients and families, public education, training,
advocacy to government, research, support and
cooperation of fellow support groups at national and
international levels..
In the preliminary study, researchers found
SLE patients who joined the SDF had life
satisfaction and were able to enjoy happiness even
though they knew that their illness had no cure and
threatened their lives and daily lives. They show
good subjective well-being (SWB).
Subjective well-being is a subjective
evaluation of a person's life including concepts such
as life satisfaction, pleasant emotions, fulfillment,
satisfaction of areas such as marriage and work, low
levels of unpleasant emotions. Diener defines SWB
as an individual's personal judgment of his life, not
based on expert judgment, including on satisfaction
(both in general and on specific aspects), pleasant
affects, and low levels of unpleasant affection. The
subjective well-being is the level at which one
judges the quality of life as expected and feels
pleasant emotions. Subjective well-being shows life
satisfaction and evaluation of important life domains
such as work, health, relationships, and emotions. In
other words, happiness is the name given to positive
thoughts and feelings toward one's life (Diener et al.,
2017; Huppert and So, 2013; Stone, 2012) . In this
study subjective well-being is described as a
subjective evaluation of a person about his life,
which includes a frequent and intense positive
affective state, relative no anxiety and depression,
and global life satisfaction.
This study aims to describe the characteristics
of stress coping strategies used by the subject and
explores how coping stress can produce good SWB
in SLE patients who are members of SDF.
2 METHODS
This research uses descriptive quantitative methods
of stress coping strategies used by respondents and
deepened with qualitative exploratory to be able to
explain how coping strategy used influences high
SWB in SLE patients.
Participants of this study were 14 people with
SLE with criteria of having high SWB score, active
following SDF organization, SWB diagnosed more
than 6 months, not undergoing hospitalization, and
signing informed consent.
This research data was collected through close-
ended question for demographic characteristics and
coping strategy characteristics. To explore more
deeply the cause of selection of coping strategies,
open-ended questions were used.
This research uses semi-structured interview
technique using guide question about dimension of
SWB that is cognitive and affective dimension. The
cognitive dimension means understanding a person
about his life, a feeling of sufficiency, peace and
contentment, and the gap between desire and need
with accomplishment and fulfillment. Questions of
the SWB cognitive dimension include subject areas
of subject satisfaction in various areas of life such as
areas related to self, family, peer group, health,
religion, finance, work, and leisure.
To get an overview of the affective dimensions
of SWB, respondents were interviewed about
moods, pleasant and unpleasant emotions, reactions
to others, their frequency and intensity. The positive
effects of SWB include the symptoms of
enthusiasm, joy, and the happiness of life. Semi-
structured interviews were also conducted on the
dimensions of stress coping strategies referring to
The Coping Orientation to Problems Experienced
(COPE) consisting of 15 questions (Rinaldi et al.,
2006).
The characteristic of coping stress was
observed descriptively. The data collected through
the open-ended questionnaire is processed (coded
and categorized) according to the respondents'
answers collected. The results of in-depth interviews
on the respondents are understood and explored in
depth to what is meant and happened in the field.
Intense understanding and interpretation is done,
thus the work of collecting data is directly followed
by recording, editing, classifying, reducing, and
presenting.
Happiness in Suffering of Systemic Lupus Erythematosus: Does It Make Sense?
65

3 RESULTS AND DISCUSSION
3.1 Results
3.1.1 Respondents’ Characteristics
Respondents with SLE were predominantly female
(64%). Of all female respondents, 67% had SLE for
over 3 years and the remaining 1-3 years. Male
respondents 20% had SLE less than 1 year, 80% for
1-3 years, and 20% for more than 3 years.
.
3.1.2 Characteristics of Coping Stress
Strategies
Table 1 describes the characteristics of coping stress
strategies of SLE patients in SDF.
Table 1: A Description of Coping Stress Strategies.
Coping Strategies
Number of SLE
Respondents
Percent
(%)
Turning to Religion
13
92.9
Active Coping
8
57.1
Planning
7
50.0
Suppression of Competing
Activities
7
50.0
Straint Coping
9
64.3
Acceptance
11
78.6
Positive Reinterpretation
and Growth
10
71.4
Seeking Social Support for
Instrumental Reasons
14
100.0
Seeking Social Support
For Emotional Reasons
12
85.7
Focusing on and
venting of emotion
12
85.7
Humor
8
57.1
Denial
4
28.6
Behavioral
disengagement
6
42.9
Mental disengagement
6
42.9
Alcohol and drug
disengagement
0
0.0
From table 1, it is seen that coping strategies are
widely used, namely turning to religion, active
coping, straint coping, acceptance, positive
reinterpretation and growth, social support, focusing
on and venting of emotion. None of them vent the
problem with consuming alcohol. All respondents
use the social support strategy for instrumental
reasons.
3.1.3 Description of Coping Factors
Based on the results of in-depth interviews to
respondents, it turns out that all coping strategies are
widely used based on gratitude. Gratefulness for
family owned, the presence of others who have
helped, and being grateful for positive events in their
lives has made the subjects adapt and reconcile with
the disease.
3.2 Discussion
All respondents have high SWB, they feel that
everything is going well, experiencing life
satisfaction, often feeling joy, and rarely feel
unpleasant emotions such as sadness or anger.
Although they have the possibility of SLE disease
throughout their age, they can still feel good things.
The twists and turns of life and the challenges facing
SLE disease are part of the reason for respondents'
satisfaction. Based on the characteristics of the
subject, 64% were female. Although women often
use emotions rather than ratios, in fact SLE sufferers
use the balance of reason and liver in dealing with
his body condition in a positive manner.
The most frequently used coping strategies relate
to religion (turning to religion, active coping, straint
coping, acceptance), emotional control (positive
reinterpretation and growth, focusing on and venting
of emotions), and the environment (seeking social
support). None of the respondents use alcohol as a
coping strategy because they know that alcohol will
aggravate their illness. After an interview to explore
further, the researchers found that all was based on a
sense of ego. Respect on respondents is mainly in
the form of gratitude for the existence of the family,
the presence of others who have helped, and feel
grateful for positive events in life
Gratitude can increase the SWB both directly
and with a self-esteem mediator (Lin, 2015).
Positive activities and the people involved in the
activities affect the success of positive activities
when people do the activity. Participation in positive
activities supported by the SDF enhances their
confidence.
Gratitude motivates people to express their
sensitivity and concern for others and be
compassionate to third parties who are not involved
(DeWall et al., 2012). Respondents felt the
togetherness and support among those who joined
the SDF foundation. If there are respondents who are
sad, then other respondents tried to comfort him and
give him joy. This gives rise to positive emotions.
Positive emotions extend people's ability to weigh
ICSE 2017 - 2nd International Conference on Sociology Education
66

various behavioral choices, and increase endurance
while releasing negative emotional effects. Gratitude
has an aspect of taking wisdom / benefit over not
meeting fulfillment of expectations. Through this
mechanism, gratitude has the advantage of leading
to social ties, thus facilitating a unique path to
prosperity (Emmons and Stern, 2013).
According to Hamka, a philosopher, scholar and
poet, Islam teaches humankind four ways to the
happiness of I'tikad (self-motivated motivation),
belief (strong belief in something he is doing), faith
(proven by oral and deeds), and religion/ad-diin. The
last stage is ad-diin, which is total surrender to God,
perfect self-servitude. Those who run ad-diin well
do not feel sad prolonged because they are
absolutely sure of the path God has chosen for them
(Wibowo, 2013). Similarly, respondents with SLE,
they believe that God does not provide trials beyond
the limits of his ability. This is also seen in their
very high acceptance level. Though SLE obstructs
their daily activities, yet in every condition they
always think of God's blessings. They perceive the
condition of SLE suffered is the way God loves
them so that they always remember God and do
good. This makes the subject adapt and reconcile
with SLE.
4 CONCLUSIONS
SLE causes a severe manifestation of the sufferer.
Until now there is no treatment that can cure SLE.
This condition is exacerbated by the side effects of
steroid drugs and immunosuppresses that have been
used to relieve attacks. On the basis of gratitude,
people with SLE who join the SDF organization
choose coping strategies of religion, emotional
control, and environmental support so that people
with SLE can feel the ultimate happiness in the long-
suffering SLE. SLE patients are always grateful in
the heart, spoken, and applied in everyday life in
order to get a good subjective well-being.
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