RESEARCH ARTICLE

Uncertainty and Opportunities in Patients with

Established Systemic Lupus Erythematosus:
A Qualitative Study
M. Mattsson1,2* MSc, RPT, B. Möller3 MD, T. Stamm4 Priv. Doz., PhD, Dr. Hum. Biol., MSc, MBA, OT,
G. Gard1,5 Prof, RPT & C. Boström6 PhD, RPT
1
Department of Health Sciences, Luleå University of Technology, Luleå, Sweden
2
Department of Physiotherapy, Sunderby Hospital, Luleå, Sweden
3
Department of Rheumatology, Sunderby Hospital, Luleå, Sweden
4
Division of Rheumatology, Department of Internal Medicine III, Medical University of Vienna and Division of Occupational Therapy,
Department of Health, University of Applied Sciences – FH Campus Wien, Vienna, Austria
5
Department of Health Sciences, Lund University, Lund, Sweden
6
Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden

Abstract
Systemic lupus erythematosus (SLE) is a chronic disease which can affect any organ, and the impact of the condition
will affect each person differently. There are few qualitative studies including the experiences of both women and
men with a diagnosis of SLE corresponding to the American College of Rheumatology (ACR) criteria where both
negative and positive impacts of the disease have been presented.
Purpose. The aim was to describe how patients with established SLE experience their illness in everyday life, includ-
ing both negative and positive aspects.
Method. Four focus group interviews were conducted with 16 women and three men with SLE according to ACR
criteria, with varied disease activity and no or little organ damage. The interviews were tape recorded, transcribed
verbatim and analysed using qualitative content analysis.
Results. Two themes emerged: multifaceted uncertainty contained the categories ‘an unreliable body’, ‘obtrusive
pain and incomprehensible fatigue’, ‘mood changes and worries’, ‘reliance on medication and health care’; Focus
on health and opportunities included ‘learning process implying personal strength’, ‘limitations and possibilities in
activities and work’, ‘a challenge to explain and receive support’ and ‘living an ordinary life incorporating meaning-
ful occupations’.
Conclusions. While we expected to find a mainly negative impact, positive aspects were also described. Our findings
were complex and showed that patients with established SLE can experience both uncertainty and opportunities.
This highlights the importance for healthcare professionals of gaining a better understanding of patients’ uncer-
tainty, to enable them to support patients, allowing them to focus on health and opportunities. Measurement
instruments that capture different aspects of uncertainty and opportunities needs to be developed. Copyright ©
2011 John Wiley & Sons, Ltd.

Keywords
Content analysis; everyday life; qualitative study; SLE

*Correspondence
Malin Mattsson, Department of Physiotherapy, Sunderby Hospital, SE-971 80 Luleå, Sweden. Tel: +46 920 283720; Fax: +46 920 283725.
E-mail: malin.mattsson@nll.se

Published online 18 October 2011 in Wiley Online Library (wileyonlinelibrary.com) DOI: 10.1002/msc.220

Musculoskelet. Care 10 (2012) 1–12 © 2011 John Wiley & Sons, Ltd. 1
Experiences of SLE in Everyday Life
Introduction
Systemic lupus erythematosus (SLE) is a chronic and
autoimmune disease, which most frequently affects
women (D’Cruz et al., 2007). Any organ and organ sys-
tem can be affected, which may result in diversity in
damage, and, together, with variations of disease activ-
ity over time (Manzi et al., 2003), can lead to great dif-
ferences in the functioning and health of patients
(Bauernfeind et al., 2009; Stamm et al., 2007). Survival
rates have increased over the years, as a result of
improvements in medical treatment (Ippolito and
Petri, 2008). In spite of this advance, the disease
is still associated with increased mortality compared
with the general population (Ippolito and Petri,
2008), increased co-morbidity compared with controls
(Asanuma et al., 2003; Bruce et al., 2003) and lower
health-related quality of life (HRQL) compared with
the general population (McElhone et al., 2006).
Patients and healthcare professionals differ greatly in
their views of the outcomes of illness (Hewlett, 2003).
Patients with SLE have revealed that, in their experi-
ences, their feelings were inadequately understood by
healthcare professionals, resulting in a lack of informa-
tion (Hale et al., 2006a). The multifaceted character of
SLE highlights the significance of understanding the ill
person’s own experiences, which is well described by
qualitative studies (Malterud, 2001). A framework with
which to describe the consequences of a disease is the
International Classification of Functioning, Disability
and Health (ICF) (World Health Organization, 2001).
The ICF is based on a bio-psychosocial perspective,
covering both negative and positive aspects of func-
tioning and health.
Differences in the outcome of SLE are related to eth-
nicity, which involves non-biological characteristics
such as cultural and sociodemographic features
(Calvo-Alén and Alarcón, 2007). SLE may be experi-
enced differently, depending on a country’s healthcare
system and labour market. To better understand
patients from different countries, more qualitative
studies are needed in order to develop patient-reported
measurement instruments and best possible interven-
tions for patients with SLE. Reports of the patient’s
perspective of SLE have illustrated varied and predom-
inantly negative experiences associated with the disease
(e.g. Archenholtz et al., 1999; Baker and Wiginton,
1997; Bauernfeind et al., 2009; Goodman et al., 2005;
Hale et al., 2006a,b; McElhone et al., 2010; Mendelson,
2006, 2009; Robinson et al., 2010; Stamm et al., 2007;
2 Musculoskelet. Care 10 (2012) 1–12 © 2011 John Wiley & Sons, Ltd.
Mattsson et al.
Wiginton, 1999; Wittmann et al., 2009). Different
negative consequences in body function and structures,
activity and participation, as well as barriers in environ-
mental factors, have been presented (Bauernfeind et al.,
2009; Stamm et al., 2007). Others have found impaired
work life, social functioning and recreation (Robinson
et al., 2010); being misunderstood by others and de-
pendency (Wiginton, 1999); changed appearance and
isolation (Hale, 2006b); and changes of identity
(Archenholtz et al., 1999). However, positive experi-
ences have also been identified in a few studies, such
as personal growth (Wittmann, 2009) and the
development of relationships (Boomsma et al., 2002;
McElhone et al., 2010). Many studies reporting on the
perspective of patients with SLE were conducted on peo-
ple whose diagnosis had not been confirmed explicitly
using the criteria specified by the American College of
Rheumatology (ACR) for SLE, or were self-reported
and/or involved only women (Archenholtz et al., 1999;
Baker and Wiginton, 1997; Bauernfeind et al., 2009;
Goodman et al., 2005; Hale et al., 2006a.b; Mattje and
Turato, 2006; McElhone et al., 2010; Mendelson, 2006,
2009; Ow et al., 2011; Pettersson et al., 2010; Schattner
et al., 2008; Taïeb et al., 2010; Wiginton, 1999; Wittmann
et al., 2009). The aim of this study was to describe how
patients with established SLE experience their illness
in everyday life, including both negative and positive
aspects.
Methods
A qualitative study using focus group interviews was
conducted.
Participants
Patients with established SLE attending a hospital in
northern Sweden were included, based on the following
criteria: having a diagnosis meeting the ACR criteria for
SLE (≥4) (Tan et al., 1982), confirmed by a rheumatol-
ogist; and ≥18 years of age and able to understand and
speak Swedish. Exclusion criteria were: acute-stage SLE,
very severe SLE (e.g. end-stage organ impairment) or
severe cognitive impairment that would rule out partic-
ipation according to a rheumatologist.
Participants were recruited from the 69 patients with
SLE being followed at the rheumatology clinic, and the
52 patients who fulfilled the criteria were invited (in
batches) by the first author (M. M.), by letter, to partic-
ipate in the study. Twenty patients agreed to participate;
Mattsson et al. Experiences of SLE in Everyday Life

however, one of these withdrew before the interviews,
for personal reasons, leaving 19 participants (16 women
and three men) (Table 1).
Overall ongoing disease activity and organ damage
were assessed by a rheumatologist (Griffiths et al.,
2005). Disease activity varied from none to high levels
of activity, and organ damage from none to low dam-
age (Table 1). The diseases and/or conditions exhibited
included the following: non-SLE-induced cardiovascu-
lar, pulmonary and metabolic disorders.
Data collection
Four focus groups were conducted. Group 1 consisted
of participants 1A–1E; group 2 of participants 2A–
2E; group 3 of participants 3A–3D and group 4 of
participants 4A– 4E. The focus groups met in an undis-
turbed room at the hospital and were all chaired by the
same moderator (M. M.). An observer tape-recorded
the data and assisted the moderator. Each session
started with a short introduction about the aim of the
study, explaining that the interview would be recorded
and that subjects were not to reveal each other’s experi-
ences outside of the focus group. Each interview lasted
approximately one to one-and-a-half hours.
The interview guide was inspired by the ICF and
covered the influence of the illness on participants’
bodies, their ability to be active and to participate in
everyday life, and factors in the environment and char-
acteristics of the person that facilitated or hindered
everyday life. The interview guide and the focus group
situation were tested and refined in a ‘pilot’ interview
with one moderator (M. M.), one observer and four
patients (two women and two men) with SLE. These
patients did not participate in the main study. The in-
terview started with a general question: ‘How has
your experience of the disease SLE influenced you?’, in or-
der to stimulate discussion and to capture both nega-
tive and positive experiences. Open-ended questions
(Table 2) and follow-up questions were also asked.
Data analysis
The recorded interviews were transcribed verbatim by
the first author (M. M.). The focus groups were la-
belled 1–4 and each participant was assigned a letter,
thus participant A in focus group 1 became A1. The
transcriptions were analysed by using inductive qualita-
tive content analysis (Graneheim and Lundman, 2004;
Elo and Kyngäs, 2008). Content analysis is frequently
used to analyse focus group data (Webb and Kevern,

Table 1. Characteristics of participants with SLE (n = 19)

Focus group 1 Focus group 2 Focus group 3 Focus group 4

(1A–1E) (2A–2E) (3A–3D) (4A–4E)

Gender, women/men, numbers 5/0 3/2 3/1 5/0

Age, years, median (range) 58 (45–71) 56 (27–59) 54.5 (45–80) 51 (45–72)
Disease duration, years, median (range) 25 (10–34) 28 (8–34) 25.5 (12–27) 13 (7–30)
Overall disease activity, score, median (range)
SLEDAI†,} (0–105) 1 (0–7) 0 (0–3) 1 (0–16) 0 (0–8)
Overall organ damage, score, median (range)
SLICC{,},} (0–49) 3 (0–6) 2 (2–3) 1 (0–2) 1 (0–3)
ACR†† criteria, numbers, median (range) 5 (5–8) 5 (4–6) 5.5 (4–7) 5 (4–5)
Professional status, numbers
Working full-time/part-time 0/0 2/1 0/0 1/0
Working part-time and sick-listed or early retirement part-time 2 1 1 2
Full-time early retirement/retired 1/2 1/1 2/1 1/1
Manual workers/non-manual employees{{ 2/3 2/3 1/3 2/3
†
SLEDAI, Systemic Lupus Erythematosus – Disease Activity Index
{
SLICC, Systemic Lupus International Collaborating Clinics (American College of Rheumatology) – Damage index
}
The higher the score, the more severe the disease activity or the organ damage
}
Organ damage occurred in musculoskeletal, cardiovascular, neuropsychiatric, skin, ocular and/or the peripheral vascular organ systems
††
American College of Rheumatology
{{
The most recent occupation classified according to the Swedish socioeconomic classification (Reports on Statistical Co-ordination, 1982)

Musculoskelet. Care 10 (2012) 1–12 © 2011 John Wiley & Sons, Ltd. 3
Experiences of SLE in Everyday Life
Table 2. Interview guide
– How has your experience of the disease SLE influenced you?
– How has the disease influenced your body?
– How has the disease influenced your ability to be active and to
participate in everyday life?
– Has there been anything in the environment or concerning yourself
that has hindered your everyday life?
– Has there been anything in the environment or concerning yourself
that has facilitated your everyday life?
– Is there anything else you wish to add on how SLE has influenced you?
2001; Krippendorff, 2004). The analysis was conducted
in the following steps (Graneheim and Lundman,
2004): (i) The transcribed interviews were read through
to gain an overall sense of the material; (ii) The tran-
scriptions were divided into meaning units which corre-
sponded to the aim of the investigation. Meaning units
are words, phrases or entire sentences covering aspects
linked to one another through their context and content;
(iii) Meaning units were condensed while maintaining
content; (iv) The condensed meaning units were labeled
with a code; (v) The codes were compared, to determine
differences and similarities, and were grouped into
subcategories; (vi) Subcategories were grouped into
categories in the same way; (vii) Themes were created
during the analysis, by taking into account the underly-
ing latent meaning of the categories, which resulted in
two themes. The analysis moved back and forth through
the steps in an iterative process. An example of the anal-
ysis is illustrated in Table 3. Three of the authors (M. M.,
G.G. and C. B.) participated in all steps, to increase the
trustworthiness of the analysis (Stige et al., 2009). After
discussion and reflection, we sought agreement on how
the data were to be sorted and labelled. The other
authors (B. M. and T. S.) reflected on the findings.
Ethical approval
The regional ethics committee at Umeå University
approved the study. Informed written consent was
obtained from all participants, in accordance with the
Helsinki Declaration.
Results
The 19 participants had a median age of 55 years (range
27–80) and a median disease duration of 27 years
(range 7–34). Two themes, ‘multifaceted uncertainty’
and ‘focus on health and opportunities’, emerged from
4 Musculoskelet. Care 10 (2012) 1–12 © 2011 John Wiley & Sons, Ltd.
Mattsson et al.
the analysis and are described below, with categories
and representative quotations.
Multifaceted uncertainty
An unreliable body
The participants experienced a variety of types and
degrees of discomfort, owing to the involvement of dif-
ferent organs. The body was experienced as being fragile,
with pain and bruises being easily provoked and a re-
duced healing capacity. When the hair, skin, memory
and concentration were influenced, it induced worry.
The body was perceived to be unreliable, as a result of
the reduced immunity and an increased sensitivity to
stress and to exposure to sunlight. The illness was experi-
enced as being unpredictable. It could flare up suddenly
and last for a long time, and periodic raised temperature
and weight loss were reported. Sleep could be disturbed,
which resulted in mood changes, reduced energy and a
daily need for periods of rest. The experiences of having
SLE also included suffering from other diseases, such as
stroke or myocardial infarction. Uncertainty was
expressed, as it was difficult to know what caused differ-
ent complaints or conditions; were they attributable to
SLE, to another disease or to life itself? It could also be
difficult to know if one was in a flare-up period or not:
‘. . .It’s so inconsistent, so to speak, it’s so variable. I
often say SLE is cancer number two, because you
don’t know if you will be able to be so very lively to-
day, but you’ll be having a flare-up next week, just
like that, it’s so very unpredictable. . .’ (1B)
‘. . .I think it’s hard to know [complaints/
reduced energy], but everybody has better or worse
days, but what is SLE and what is me, myself? It’s
really difficult to try to separate the two’ (2A)
‘It’s really difficult’ (2D)
‘What are normal people like, so to speak?. . .’ (2A)
‘. . .I have it in my central nervous system. It makes
me forgetful; I just don’t remember things. This frus-
tration is extra, an additional frustration; I was so
worried that I was [becoming] demented. . .’ (1B)
Obtrusive pain and incomprehensible fatigue
Pain and fatigue interfered with everyday life. Pain
could be associated with stiffness and muscle weakness,
be continuous or fluctuate quickly in both its intensity
and location; this latter fact was said to be difficult to
Mattsson et al. Experiences of SLE in Everyday Life

Table 3. Examples of meaning units, condensed meaning units and codes used in the analysis of the category Learning process implying
personal strength

Meaning units Condensed meaning units Codes

You never know, how it will be tomorrow, Never know what tomorrow will be like, Learned to live for the present moment
but one has to try anyway; with the passage with time have learnt to live in the present
of time, one has learnt to live for the present
moment; it feels good today
You could learn to live [with it] and listen Have to and learn to listen Learned more about listening to the body
to your body perhaps more than before, or to the body more than before
you just have to do it
I have learnt a great deal about medications, about Learned about medication, body, Learned more about oneself
my body, my mentality, about how I work, what mentality and about oneself
interacts with what, I really think it has been an
incredible school

understand. The pain could emerge during or after
physical exertion, decreasing the ability to perform ac-
tivities and reducing the possibility of working in
physically demanding occupations. Aches were some-
times more prominent when the person was still, and
disturbed sleep could be a consequence, which was
claimed to be more trying than suffering severe illness.
Fatigue and reduced energy were described as strange,
difficult to comprehend, ‘paralysing’ and impossible
to overcome with sleep. It could influence everyday life
negatively and reduce self-confidence, and induce guilt
in relation to the family. Fatigue limited participants’
ability to perform daily home and leisure activities.
Uncertainty was expressed about the origins of the
fatigue:
‘. . .One has a strange tiredness that’s not an
ordinary normal tiredness. . .’ (3C)
‘. . .I don’t know if it’s bound up with the actual
illness or with sleeping badly at night, but I always
seem to feel a vague tiredness, I’m not always very
lively. . .’ (3A)
Mood changes and worries
Mood changes and worries were experienced. Sad-
ness and depression varied over time, and could be es-
pecially prominent when accompanying flare-ups and
pain. Worry was associated with the course of the ill-
ness and included whether the participant’s children
would inherit the disease and about the risk of not
being believed by physicians in its early stages of the
illness. Stress was experienced in relation to other
people’s thoughts about the illness:
‘. . .You simply feel depressed: I recognize that it
can be especially the case in the morning, being a
bit depressed, but is this something that the rest of
you also notice? That you tend to be sad?’ (1B)
‘Yes’ (1E)
‘But I don’t know if it’s especially in the
morning. . .’ (1D)
Reliance on medication and healthcare
A dependency on medicine, not knowing how to
react to medication and fear of side effects were men-
tioned. Participants would have liked to stop taking
medication, but they also explained that they were
afraid of stopping, and hoped that new medications
would be made available to cure and ease SLE. On the
one hand, the medication made them feel healthy and
gave them back their lives but on the other hand, they
had side effects such as sleeping problems, weight gain
and osteoporosis. Participants were grateful for the
healthcare they received and explained that it was im-
portant to have easy access to healthcare. However, they
also expressed that some healthcare professionals had
insufficient knowledge about SLE, which diminished
their trust as patients. The need for more information
about the disease and for medications was stressed:
‘. . .I can be grateful for those pills, right? How
could I live if they didn’t exist?. . . No, we don’t
know. Yes, I’m sure that I’d have gone under if
those medicines hadn’t stopped the awful flare-
ups that I had, it’s them [the medication] that
sharpen me up again. . .’ (1B)
‘. . .The medication gets me nervous sometimes. It
is pretty strong and has quite a lot of side effects,

Musculoskelet. Care 10 (2012) 1–12 © 2011 John Wiley & Sons, Ltd. 5
Experiences of SLE in Everyday Life
so then I think sometimes, what will taking these
[the medication] lead to? I was so ill because of that
medicine. . .’ (4B)
Focus on health and opportunities
Learning process implying personal strength
Falling ill was physically and emotionally demanding
and hard to get used to; there was a huge change be-
tween being healthy and active, and being ill in bed. Be-
ing young and ill could affect both self-confidence and
self-image. Furthermore, getting accustomed to having
the illness was difficult and a long procedure. During
this process, participants had obtained knowledge about
the disease and learned to manage life with the illness.
They had learnt more about listening to their bodies
and could recognize some reasons for deterioration –
for example, physical or mental overload. They had also
learnt the importance of their mental well-being and its
positive effects on their illness. It had been necessary to
learn to set priorities and, although this was tough, it
was seen as a positive consequence of being ill. Personal
insights were described; owing to the illness, participants
had learnt to live in the present moment, to live a less
hectic life and to find joy in small, ordinary things.
The process of learning to live with the illness could
include becoming more grateful, humble and under-
standing, and being stronger emotionally:
‘. . .It’s given me opportunities to ensure that I pri-
oritize what I want; I am better able to prioritize
owing to the SLE because I’ve been forced to prior-
itize; I think perhaps one could call this a small ad-
vantage in some way. . .’ (4E)
‘. . .One becomes humble and so much more
forgiving. . .’ (4E)
‘And gratefulness! You also learn to be grateful for
the day’ (4D)
‘And to be pleased with the present moment. . .’ (4B)
Limitations and possibilities in activities and
work
The illness had influenced life, but to differing
extents. Participants had been forced to limit their
activities and/or to give up activities, and therefore
could not choose activities freely. Certain activities
had to be adapted and carried out in a different way,
and some tasks took longer to carry out. The use of aids
6 Musculoskelet. Care 10 (2012) 1–12 © 2011 John Wiley & Sons, Ltd.
Mattsson et al.
could be helpful and the need for aids could vary over
time. Failure to perform a specific activity could also
reduce the motivation to try to do any of it. In addition,
the uncertainty surrounding what they would manage
to do could make it difficult to plan. Illness affected
work and necessitated periods of sick leave, which
could lead to feelings of isolation and have a negative
impact on the person’s financial situation. In addition,
the opportunity to choose a job was sometimes limited
and some had to work part time, and others could not
work at all. Nevertheless, working part time could be
seen as a means of making it possible to work, while
providing an opportunity to have sufficient energy for
valued leisure activities. Returning to work after sick
leave, however, could be difficult. On the other hand,
participants had the benefit of being able to spend
more time with their children when it was not possible
to work:
‘. . .I tried to work all the possible combinations of
hours: half a day, two hours every two weeks, I
tried it all, but I ended up being hospitalized. It
didn’t work! But, yes, there was a gain from it, as
I’ve been able to be with the children; in that sense,
I’ve had the possibility of taking care of some things
that others haven’t been able to do. . .’ (3A)
A challenge to explain and receive support
Participants received practical help and delegated
tasks to others, to enable them to focus on their own
health and opportunities. The receipt of support could
also suppress feelings of isolation. Getting support
from and giving support to others with illness was very
valuable, as was getting support from a counsellor.
Lack of support induced feelings of sorrow and anger,
although participants did not always want help, as they
wanted to remain independent. Relationships were said
to be influenced: it could be difficult to be positive with
their children; participants sometimes felt that they
were a bother to their partner, and their intolerance
to sun exposure could limit their social life. Partici-
pants explained the disease and its consequences to
others, to ensure that they would receive understanding
and support, although they found this hard because of
the complexity and invisibility of the illness. When
signs of illness were visible, it was easier to explain, al-
though having visible signs of illness was not something
they preferred, as they did not want everyone to know
Mattsson et al.
about their disease and regard them as being ill. Parti-
cipants sometimes tried to hide the disease, joking it
away instead of explaining it. Support in explaining
the disease to others was wished for. Explaining it to
family members was difficult, as the provision of infor-
mation could reduce their worries, but it could also up-
set them:
‘. . .I also think it’s so difficult to explain. . .’ (3A)
‘It’s just that it’s difficult for someone else to under-
stand what it’s really like when others can’t see it; if
you have something visible, you can explain it or
show it. . . ’ (3C)
‘It is pointless, you can’t do it; you can’t explain it,
because it’s such strange pain, different pain or
ache, you can’t do it. Do you feel well or unwell?
Yes, as earlier, I usually answer, because it isn’t
possible to explain, not for me anyway. . .’ (3A)
‘. . .One’s so limited, it’s a good thing that I have a
sympathetic husband; he has hardly seen me well. . .
Anyway, he’s willing to help, but he’s active and he
is younger than me and he must do his own thing,
so I always feel I’m a bother. . .’ (1A)
Living an ordinary life incorporating
meaningful occupations
The participants lived life as usual, without concen-
trating on the disease. They considered themselves to
be healthy when they felt healthy, and in good phases
they forgot the disease. They described being happy
when they felt healthy and as they were only mildly af-
fected compared with others. Attempts to identify
alternative ways to attain good health for example
through the use of complementary medicine, were de-
scribed, but they found it difficult to know which treat-
ments could be trusted. Assets for easing the
management of SLE were: having a positive attitude
to life, stubbornness and the will to struggle on. When
they were in good health, they wanted to do a great
deal, and sometimes this led to overexerting them-
selves; however, they emphasized the importance of
finding and doing meaningful things, such as leisure
activities, and doing them even if they were demanding.
Sometimes, however, it was necessary to find new ac-
tivities which were more manageable. Being occupied
reduced their symptoms, both in body and mind. To
be able to do meaningful activities, they planned ahead,
which made their lives easier and helped them to avoid
Musculoskelet. Care 10 (2012) 1–12 © 2011 John Wiley & Sons, Ltd.
Experiences of SLE in Everyday Life
setbacks. Being able to work was important, as it pro-
duced feelings of pleasure and well-being, and offered
opportunities to socialize. Physical activity and exercise
brought feelings of well-being and mental distraction,
and decreased pain and joint problems. However, some
also thought that, exercise could not lead to physical
improvement:
‘. . .I want to be normal; I suppose normal means
feeling healthy when one feels healthy. . .’ (2A)
‘. . .I was the kind of person who refused to be ill.
Like, No-o-o-! It’s no big deal; there are those that
are a lot worse off than I am. . .’ (2E)
‘. . .It’s good to really try. What would our life be
like otherwise: if we were to just lie down and look
up at the ceiling? I have to find meaningful things
to do. . .’ (1B)
Discussion
In this study, the following two themes were found that
described patients’ experiences of SLE in everyday life:
(i) multifaceted uncertainty and (ii) focus on health
and opportunities.
An unreliable body was one aspect of the multifaceted
uncertainty in our study. Similar results in patients with
SLE have been found previously (Archenholtz et al.,
1999; Bauernfeind et al., 2009; Mendelson, 2006;
Wiginton, 1999). Participants reported having difficulty
in differentiating between illness and normal reactions
in life, other complaints or conditions. Also some had
difficulties in determining whether or not they were hav-
ing a flare-up. The latter uncertainty has been studied by
Goodman et al. (2005), for example, who found that the
majority of their patients were able to tell whether or not
they were having a flare-up but around 40 per cent could
not. Others have suggested that patients could not
distinguish SLE from co-morbidities (Hudson et al.,
2008). Uncertainty about the underlying causes of com-
plaints was expressed as a difficulty in understanding
how pain could fluctuate so quickly in the body, and
in understanding and determining the reasons for
fatigue, which we termed obtrusive pain and incompre-
hensible fatigue in our study. Mendelson (2006) found
that living with SLE meant having to interpret a variety
of symptoms, which could result in worries. Mood
changes and worries contributed to the multifaceted un-
certainty for our participants. Medications were said to
give participants their lives back, but a reliance on
7
Experiences of SLE in Everyday Life
medication and health care was also considered to add to
their uncertainty because of not knowing how they
would react to the medication and its side effects. Fur-
ther, healthcare professionals could contribute to the un-
certainty if they were uninformed about the disease. In an
earlier study, patients were shown to be unable to discern
side effects caused by medication from symptoms of SLE
(Baker and Wiginton, 1997). The uncertainty involved in
having SLE seems to be complex and have many causes.
Earlier studies have, for example, shown that the severity
of the disease (Chuang et al., 2010) or pain (Akkasilpa
et al., 2000) was associated with uncertainty. Wiginton
(1999) reported that older patients spoke of uncertainty
and the unpredictability of SLE more than younger ones.
Our participants were older than those in many qualita-
tive studies, which could contribute to the diversity of
uncertainty they experienced
Participants in our study focused on health and op-
portunities, despite the negative consequences of SLE.
The learning process implying personal strength included
setting priorities, personal insights and becoming emo-
tionally stronger. A few other studies have exhibited
similar results, expressed as: positive consequences of
having SLE (Goodman et al., 2005), an enriched expe-
rience of life (Bauernfeind et al., 2009; Stamm et al.,
2007) and personal growth (Wittmann, 2009). Others
have also described the development of relationships
(Boomsma et al., 2002; McElhone et al., 2010). The
reasons why our participants experienced an increase
in personal strength might be that they had had their
disease for a long time and that the majority had a mild
form of the disease. Being diagnosed with a chronic
disease such as SLE is a traumatic experience and often
gives rise to a change in one’s sense of identity (Stockl,
2007), even in mild SLE, without a profound effect on
daily life (Mendelson, 2006). Limitations and possibili-
ties in activities and work e.g. not being able to work
at all, or full time was associated with the opening up
of opportunities, as it made it possible to do beneficial
things of personal value. Others have also described
positive aspect of work impact, such as a justification
to resign from a job that was not enjoyable (McElhone
et al., 2010). Our participants considered it as a chal-
lenge to explain and receive support, but it was necessary
to make it possible for them to focus on health and op-
portunities. Adequate support was important for a feel-
ing of independence. It was hard to explain the disease
to others, for several reasons – one being that partici-
pants had to inform others that they were ill. The
8 Musculoskelet. Care 10 (2012) 1–12 © 2011 John Wiley & Sons, Ltd.
Mattsson et al.
difficulties in explaining the disease to others have pre-
viously been described (Hale et al., 2006a), as well as
the importance of support (McElhone et al., 2006;
Zheng et al., 2009). Participants were living an ordinary
life incorporating meaningful occupations, which was in
itself interpreted as a sign of health. They concentrated
on health and opportunities, and were able to forget
about the disease. This was an interesting finding, as
SLE is a disease that could have life-threatening conse-
quences. Leisure activities, physical activity and work
were considered to be meaningful and important occu-
pations. Katz et al. (2009) described how there is a
strong influence on self-rated health when people’s dis-
abilities affect valued activities. Others have found that,
in patients with SLE, work can strengthen their sense of
identity (Mendelson, 2006), hobbies and cultural acti-
vates are important for quality of life (Archenholtz
et al., 1999) and that physical activity can assure
independence and give some control over the illness
(Mancuso et al., 2011). An important prerequisite for
a focus on health and opportunity in our study was be-
ing positive and determined. A previous study showed
that when attitudes were more positive, HRQL
appeared to increase (Rinaldi et al., 2006).
Both negative and positive consequences of SLE
were identified in our study, which is in line with the
ICF framework, which posits that a disease can involve
both negative and positive aspects. Experiences of mul-
tifaceted uncertainty and focusing on health and op-
portunities would be classified as ‘personal factors’ in
the ICF framework – in other words, individual conse-
quences of the illness. The component ‘personal fac-
tors’ in the ICF includes, for example, lifestyle, habits
and coping strategies, but it is not specified in the ICF
as the other components due to the large social and
cultural variation associated with ‘personal factors’
(World Health Organization, 2001). To be able to cap-
ture different aspects of the experiences of uncertainty
and opportunities, the ICF needs to be developed
concerning the component ‘personal factors’.
According to the theoretical model of uncertainty in
illness, uncertainty occurs when a person is unable to
determine the meaning of illness-related events and/
or fails to predict outcomes when adequate cues are
missing (Mishel, 1988). Uncertainty can be experi-
enced both as a threat and an opportunity during the
course of a disease (Mishel, 1990). When uncertainty
is accepted as a natural part of life, consideration of nu-
merous possibilities and re-evaluation of what is
Mattsson et al.
important in life can take place (Mishel, 1990). Accord-
ing to Mishel (1990), if uncertainty felt by patients with
chronic illness leads to confusion, it diminishes the
sense of coherence (SOC) (Antonovsky, 1996). This is
important, as patients with strong SOC have improved
HRQL in SLE (Abu-Shakra et al., 2006). Our partici-
pants focused on health and opportunities, as they
probably viewed uncertainty as a natural part of life, in-
dicating that they might have a strong SOC. However,
Chuang et al. (2010) showed that greater uncertainty
had negative effects on quality of life and on the ability
to manage illness. Charmaz (1995) found that, after
making identity-related trade-offs, patients with chronic
illness often try to re-evaluate their identity choices in
positive terms. Theoretical models that support our
results showing gains in personal strength as a possible
consequence of SLE concern the consequences of adver-
sity (Joseph and Linley, 2006). These models have
shown that personal gains can be made from suffering,
and that growth can be followed by adversity (Joseph
and Linley, 2006). Growth does not necessarily alleviate
difficulties completely, but it lowers the level of distress
(Joseph and Linley, 2006; Wittmann et al., 2009).
It is important for healthcare professionals to ac-
knowledge the natural occurrence of uncertainty; other-
wise, patients may maintain the view of uncertainty as
an anomaly that has to be eliminated (Mishel, 1990). It
is also important to be aware of the potential of personal
growth, or else clinicians run the risk of counteracting
growth (Joseph and Linley, 2006); by contrast, they could
even act to harness the potential for personal growth by
actively encouraging it. However, clinicians should be
careful not to impose guilt on patients if they have not
achieved personal growth, or to indicate that there is
something positive per se about their distressing expe-
rience (Joseph and Linley, 2006). The findings from
our study could contribute to further development
of multidimensional patient-reported measurement
instruments addressing uncertainty and opportunities.
The use of such instruments could help healthcare
professionals to understand more about how to sup-
port patients with lifestyle changes and in the self-
management of SLE.
Study limitations and trustworthiness
Focus groups are known to be able to create data with
diversity and depth (Parsons and Greenwood, 2000),
and can enrich the information exchanged and provide
Musculoskelet. Care 10 (2012) 1–12 © 2011 John Wiley & Sons, Ltd.
Experiences of SLE in Everyday Life
a social context (Kitzinger, 1995). It relies on the belief
that we are a product of our surroundings and are influ-
enced by those with whom we interact (Curtis and
Redmond, 2007). However, individual interviews might
have highlighted different aspects. As SLE is a complex
disease, and most of the participants in our study had
had the disease for a long time, discussion stimulated
them to recall and reflect over different experiences dur-
ing the course of the disease. We included questions that
covered both negative and positive aspects, which pro-
vided valuable data, but if we had explicitly included
questions about possible positive influences of illness,
we might have increased the knowledge found still fur-
ther. Different healthcare professionals were involved,
which, while enriching the findings, could also have lim-
ited them to a medical and caring science context. It
should be noted that the social-cultural context could
have influenced the experiences associated with SLE in
our study; for example, financial consequences vary in
different countries (Mendelson, 2006; Ow et al., 2011).
Also, the participants in our study had established and
well-controlled disease, so our findings would probably
have been different in newly diagnosed or acutely ill
patients. Our study involved persons with different levels
of disease activity and no or little organ damage. The lat-
ter is common among patients with SLE, as only about
50 per cent of those in any cohort have such damage
(Griffiths et al., 2005).
Conclusions
While we expected to find that patients’ with established
SLE mainly had a negative impact on everyday life, pos-
itive aspects were also described in the present study.
Our findings are complex as both multifaceted uncer-
tainty and focusing on health and opportunities can be
experienced. The results are in line with theories associ-
ated to uncertainty in illness and personal growth fol-
lowed adversity. In order to enable healthcare
professionals to support patients to focus on health
and opportunities such as personal growth, further un-
derstanding of the experiences of uncertainty will be
necessary. Multidimensional patient-reported measure-
ment instruments to capture different aspects of uncer-
tainty and opportunities need to be developed.
Acknowledgements
We thank all the participants with SLE who shared their
experiences in the interviews. We would also like to
9
Experiences of SLE in Everyday Life
thank Lisbet Söderlund, rheumatologist, Department of
Rheumatology; Ines Nilsson, occupational therapist,
Head of Department of Occupational Therapy; Eva
Goldkuhl, nurse, Head of the Neuro-rehabilitation and
Rheumatology care units; and Barbro Ukonsaari, Head
of the Department of Physiotherapy, Sunderby Hospital,
Luleå, Sweden, for their valuable contributions and sup-
port. We are grateful to the County Council of Norrbot-
ten and the Norrbacka Eugenia Foundation, Sweden, for
research funding.
REFERENCES
Abu-Shakra M, Keren A, Livshitz I, Delbar V, Bolotin A,
Sukenik S, Kanat-Maymon Y (2006). Sense of coher-
ence and its impact on quality of life of patients with
systemic lupus erythematosus. Lupus 15: 32–37.
Akkasilpa S, Minor M, Goldman D, Magder LS, Petri M
(2000). Association of coping responses with fibromyalgia
tender points in patients with systemic lupus erythemato-
sus. Journal of Rheumatology 27: 671–674.
Antonovsky A (1996). The salutogenic model as a theory
to guide health promotion 1. Health Promotion Inter-
national 11: 11–18.
Archenholtz B, Burckhardt CS, Segesten K (1999). Quality
of life of women with systemic lupus erythematosus or
rheumatoid arthritis: Domains of importance and dis-
satisfaction. Quality of Life Research 8: 411–416.
Asanuma Y, Oeser A, Shintani AK, Turner E, Olsen N,
Fazio S, Linton MF, Raggi P, Stein CM (2003). Prema-
ture coronary-artery atherosclerosis in systemic lupus
erythematosus. The New England Journal of Medicine
349: 2407–2415.
Baker JA, Wiginton K (1997). Perceptions and coping
among women living with lupus. American Journal of
Health Behavior 21: 129–136.
Bauernfeind B, Aringer M, Prodinger B, Kirchberger I,
Machold K, Smolen J, Stamm T (2009). Identification
of relevant concepts of functioning in daily life in people
with systemic lupus erythematosus: A patient Delphi
exercise. Arthritis and Rheumatism 61: 21–28.
Boomsma MM, Bijl M, Stegeman CA, Kallenberg CGM,
Hoffman GS, Tervaert JWC (2002). Patients’ percep-
tions of the effects of systemic lupus erythematosus on
health, function, income, and interpersonal relation-
ships: A comparison with Wegener’s granulomatosis.
Arthritis and Rheumatism 47: 196–201.
Bruce IN, Urowitz MB, Gladman DD, Ibanez D, Steiner G
(2003). Risk factors for coronary heart disease in
women with systemic lupus erythematosus: The Tor-
onto risk factor study. Arthritis and Rheumatism 48:
3159–3167.
10
Mattsson et al.
Calvo-Alén J, Alarcón GS (2007). Systemic lupus erythe-
matosus and ethnicity: Nature versus nurture or nature
and nurture? Expert Review of Clinical Immunology 3:
589–601.
Charmaz K (1995). The body, identity, and self: Adapting
to impairment. The Sociological Quarterly 36: 657–680.
Chuang TH, Lin KC, Gau ML (2010). Validation of the
Braden self-help model in women with systemic lu-
pus erythematosus. Journal of Nursing Research 18:
206–214.
Curtis E, Redmond R (2007). Focus groups in nursing re-
search. Nurse Researcher 14: 25–37.
D’Cruz DP, Khamashta MA, Hughes GR (2007). Systemic
lupus erythematosus. Lancet 369: 587–596.
Elo S, Kyngäs H (2008). The qualitative content analysis
process. Journal of Advanced Nursing 62: 107–115.
Goodman D, Morrissey S, Graham D, Bossingham D
(2005). Illness representations of systemic lupus erythe-
matosus. Qualitative Health Research 15: 606–619.
Graneheim UH, Lundman B (2004). Qualitative content
analysis in nursing research: Concepts, procedures and
measures to achieve trustworthiness. Nurse Education
Today 24: 105–112.
Griffiths B, Mosca M, Gordon C (2005). Assessment of
patients with systemic lupus erythematosus and the
use of lupus disease activity indices. Best Practice &
Research. Clinical Rheumatology 19: 685–708.
Hale ED, Treharne GJ, Lyons AC, Norton Y, Mole S,
Mitton DL, Douglas KMJ, Erb N, Kitas GD (2006a).
‘Joining the dots’ for patients with systemic lupus
erythematosus: Personal perspectives of health care
from a qualitative study. Annals of the Rheumatic Dis-
eases 65: 585–589.
Hale ED, Treharne GJ, Norton Y, Lyons AC, Douglas KM,
Erb N, Kitas GD (2006b). ‘Concealing the evidence’:
The importance of appearance concerns for patients
with systemic lupus erythematosus. Lupus 15: 532–540.
Hewlett SA (2003). Patients and clinicians have different
perspectives on outcomes in arthritis. Journal of Rheu-
matology 30: 877–879.
Hudson M, Bernatsky S, Taillefer S, Fortin PR, Wither J,
Baron M, Canadian Scleroderma Research Group
(CSRG), Canadian Network for Improved Outcomes
in Systemic Lupus Erythematosus (CaNIOS) (2008).
Patients with systemic autoimmune diseases could not
distinguish comorbidities from their index disease.
Journal of Clinical Epidemiology 61: 654–662.
Ippolito A, Petri M (2008). An update on mortality in sys-
temic lupus erythematosus. Clinical and Experimental
Rheumatology 26: S72–S79.
Joseph S, Linley PA (2006). Growth following adversity:
Theoretical perspectives and implications for clinical
practice. Clinical Psychology Review 26: 1041–1053.
Musculoskelet. Care 10 (2012) 1–12 © 2011 John Wiley & Sons, Ltd.
Mattsson et al.
Katz P, Morris A, Gregorich S, Yazdany J, Eisner M, Yelin
E, Blanc P (2009). Valued life activity disability played a
significant role in self-rated health among adults with
chronic health conditions. Journal of Clinical Epidemi-
ology 62: 158–166.
Kitzinger J (1995). Qualitative research. Introducing focus
groups. British Medical Journal 311: 299–302.
Krippendorff K (2004). Content Analysis: An Introduction
to Its Methodology. Thousand Oaks, CA: Sage
Publications.
Malterud K (2001). The art and science of clinical knowl-
edge: Evidence beyond measures and numbers. Lancet
358: 397–400.
Mancuso C, Perna M, Sargent A, Salmon J (2011). Percep-
tions and measurements of physical activity in patients
with systemic lupus erythematosus. Lupus 20: 231–242.
Manzi SM, Stark VE, Ramsey-Goldman R (2003). Epide-
miology and classification of systemic lupus erythema-
tosus. In Hochberg MC, Silman AJ, Smolen JS,
Weinblatt ME, Weisman MH (eds). Rheumatology
(3rd edn). London: Mosby.
Mattje GD, Turato ER (2006). Life experiences with sys-
temic lupus erythematosus as reported in outpatients’
perspective: A clinical-qualitative study in Brazil. Revista
Latino-Americana De Enfermagem 14: 475–482.
McElhone K, Abbott J, Gray J, Williams A, Teh LS (2010).
Patient perspective of systemic lupus erythematosus in
relation to health-related quality of life concepts: A
qualitative study. Lupus 19: 1640–1647.
McElhone K, Abbott J, Teh LS (2006). A review of health
related quality of life in systemic lupus erythematosus.
Lupus 15: 633–643.
Mendelson C (2006). Managing a medically and socially
complex life: Women living with lupus. Qualitative
Health Research 16: 982–997.
Mendelson C (2009). Diagnosis: A liminal state for women
living with lupus. Health Care for Women International
30: 390–407.
Mishel MH (1988). Uncertainty in illness. Image – The
Journal of Nursing Scholarship 20: 225–232.
Mishel MH (1990). Reconceptualization of the uncertainty
in illness theory. Image – The Journal of Nursing Schol-
arship 22: 256–262.
Ow Y, Thumboo J, Cella D, Cheung Y, Fong K, Lim Y,
Sow W, Wee H (2011). Domains of health-related qual-
ity of life important and relevant to multi-ethnic English-
speaking Asian systemic lupus erythematosus patients –
A focus group study. Arthritis Care and Research 63:
899–908.
Parsons M, Greenwood J (2000). A guide to the use of fo-
cus groups in health care research: Part 1. Contempo-
rary Nurse: A Journal for the Australian Nursing
Profession 9: 169–180.
Musculoskelet. Care 10 (2012) 1–12 © 2011 John Wiley & Sons, Ltd.
Experiences of SLE in Everyday Life
Pettersson S, Möller S, Svenungsson E, Gunnarsson I,
Welin Henriksson E (2010). Women’s experience of
SLE-related fatigue: A focus group interview study.
Rheumatology 49: 1935–1942.
Reports on Statistical Co-ordination 1982: 4. Statistics
Sweden. Job titles classified according to socio-
economic classification (SEI), version 01/02/2010
(2010). Available at http://www.scb.se/sei [Accessed
26 May 2010].
Rinaldi S, Ghisi M, Iaccarino L, Zampieri S, Ghirardello A,
Sarzi-Puttini P, Ronconi L, Perini G, Todesco S, Sanavio
E, Doria A (2006). Influence of coping skills on
health-related quality of life in patients with systemic
lupus erythematosus. Arthritis and Rheumatism 55:
427–433.
Robinson D Jr, Aguilar D, Schoenwetter M, Dubois R,
Russak S, Ramsey-Goldman R, Navarra S, Hsu B,
Revicki D, Cella D, Rapaport MH, Renahan K, Ress R,
Wallace D, Weisman M (2010). Impact of systemic lu-
pus erythematosus on health, family, and work: The
patient perspective. Arthritis Care and Research 62:
266–273.
Schattner E, Shahar G, Abu-Shakra M (2008). ‘I used to
dream of lupus as some sort of creature’: Chronic illness
as an internal object. The American Journal of Ortho-
psychiatry 78: 466–472.
Stamm TA, Bauernfeind B, Coenen M, Feierl E, Mathis M,
Stucki G, Smolen JS, Machold KP, Aringer M (2007).
Concepts important to persons with systemic lupus
erythematosus and their coverage by standard measures
of disease activity and health status. Arthritis and Rheu-
matism 57: 1287–1295.
Stige B, Malterud K, Midtgarden T (2009). Toward an
agenda for evaluation of qualitative research. Qualitative
Health Research 19: 1504–1516.
Stockl A (2007). Complex syndromes, ambivalent diagno-
sis, and existential uncertainty: The case of systemic lu-
pus erythematosus (SLE). Social Science & Medicine 65:
1549–1559.
Taïeb O, Bricou O, Baubet T, Gaboulaud V, Gal B,
Mouthon L, Dhote R, Guillevin L, Rose Moro M
(2010). Patients’ beliefs about the causes of systemic
lupus erythematosus. Rheumatology (Oxford, England)
49: 592–599.
Tan EM, Cohen AS, Fries JF, Masi AT, McShane DJ,
Rothfield NF, Schaller JG, Talal N, Winchester RJ
(1982). The 1982 revised criteria for the classification
of systemic lupus erythematosus. Arthritis and Rheu-
matism 25: 1271–1277.
Webb C, Kevern J (2001). Focus groups as a research
method: A critique of some aspects of their use in
nursing research. Journal of Advanced Nursing 33:
798–805.
11
Experiences of SLE in Everyday Life
Wiginton KL (1999). Illness representations: Mapping the
experience of lupus. Health Education & Behavior 26:
443–453.
Wittmann L, Sensky T, Meder L, Michel B, Stoll T, Büchi S
(2009). Suffering and posttraumatic growth in women
with systemic lupus erythematosus (SLE): A qualitative/
quantitative case study. Psychosomatics 50: 362–374.
12
Mattsson et al.
World Health Organization (2001). International Classifi-
cation of Functioning, Disability and Health (ICF).
Geneva: World Health Organization.
Zheng Y, Ye DQ, Pan HF, Li WX, Li LH, Li J, Li XP, Xu JH
(2009). Influence of social support on health-related
quality of life in patients with systemic lupus erythema-
tosus. Clinical Rheumatology 28: 265–269.
Musculoskelet. Care 10 (2012) 1–12 © 2011 John Wiley & Sons, Ltd.