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‘But you don’t look sick’: a qualitative analysis of the LUPUS UK online forum

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Lupus is a multi-system autoimmune rheumatic disease with increased morbidity and mortality. Some manifestations are life-threatening with many aspects of living with the disease, difficulties in diagnosis and accessing appropriate medical care, having an impact on quality of life. The disease itself, and these patients’ perspectives, are currently poorly understood and under-researched. The LUPUS UK forum of conversations between over 25,000 members provides a rich environment to explore the views of these patients. Conversations on the LUPUS UK online forum were qualitatively explored using virtual ethnography and thematic analysis. The forum itself and positive medical relationships were widely considered to provide a means of support, understanding and validation. Forum members expressed difficulties in diagnosis, disease management, and the psychological and physical impact of living with an unpredictable, poorly understood disease, often with life-changing symptoms. Invalidating personal, social and medical environments were perceived as exacerbating these difficulties. Delays in diagnosis and misdiagnoses were frequently discussed as causing significant damage, especially when symptoms were disbelieved or dismissed. Invalidation was the key theme with further themes of: Uncertainty, Medical (mis)communications and misunderstandings, Navigating health systems and Resilience and support. Although effective care and support was reported by some members, the negative impact of living with an incurable, life-changing disease was often exacerbated by perceived invalidation, uncertainty, and difficulties in multiple areas of members’ lives. Improved knowledge of the disease and greater support at all stages of the diagnostic journey could improve outcomes and quality of life for these patients.
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Rheumatology International (2021) 41:721–732
https://doi.org/10.1007/s00296-020-04726-x
OBSERVATIONAL RESEARCH
‘But you don’t look sick’: aqualitative analysis oftheLUPUS UK online
forum
MelanieSloan1 · MichaelBosley2 · MoiraBlane2 · LynnHolloway2 · ColetteBarrere2· DavidD’Cruz3 ·
ChanpreetWalia4 · FelixNaughton5 · PaulHoward4 · StephenSutton1 · CarolineGordon6
Received: 18 August 2020 / Accepted: 6 October 2020 / Published online: 26 October 2020
© The Author(s) 2020
Abstract
Lupus is a multi-system autoimmune rheumatic disease with increased morbidity and mortality. Some manifestations are
life-threatening with many aspects of living with the disease, difficulties in diagnosis and accessing appropriate medical care,
having an impact on quality of life. The disease itself, and these patients’ perspectives, are currently poorly understood and
under-researched. The LUPUS UK forum of conversations between over 25,000 members provides a rich environment to
explore the views of these patients. Conversations on the LUPUS UK online forum were qualitatively explored using virtual
ethnography and thematic analysis. The forum itself and positive medical relationships were widely considered to provide a
means of support, understanding and validation. Forum members expressed difficulties in diagnosis, disease management, and
the psychological and physical impact of living with an unpredictable, poorly understood disease, often with life-changing
symptoms. Invalidating personal, social and medical environments were perceived as exacerbating these difficulties. Delays
in diagnosis and misdiagnoses were frequently discussed as causing significant damage, especially when symptoms were
disbelieved or dismissed. Invalidation was the key theme with further themes of: Uncertainty, Medical (mis)communications
and misunderstandings, Navigating health systems and Resilience and support. Although effective care and support was
reported by some members, the negative impact of living with an incurable, life-changing disease was often exacerbated by
perceived invalidation, uncertainty, and difficulties in multiple areas of members’ lives. Improved knowledge of the disease
and greater support at all stages of the diagnostic journey could improve outcomes and quality of life for these patients.
Keywords Lupus· Patient views· Patient–physician interaction· Quality of life· Misdiagnosis· Holistic care
Introduction
Systemic lupus erythematosus (SLE) is a chronic multi-sys-
tem autoimmune rheumatic disease [1] causing significant
morbidity and mortality [2, 3]. In addition, there is often a
severe impact on quality of life (QoL) [4, 5]. This includes:
increased prevalence of multiple neuropsychiatric manifesta-
tions [68], employment difficulties [5, 9], and debilitating
fatigue [5, 1012]. The unpredictability, lack of understand-
ing/recognition of the disease and diverse manifestations
generate additional challenges for patients and physicians.
Lack of definitive tests means diagnosis and management
largely relies on individual physician knowledge, with many
studies reporting inadequate training and knowledge [13,
14]. Delays in diagnosis and misdiagnoses are common with
previous studies reporting an average of 6–7years to diagno-
sis [11, 12, 15], and approximately 50% of patients initially
misdiagnosed [11, 12].
Rheumatology
INTERNATIONAL
Electronic supplementary material The online version of this
article (https ://doi.org/10.1007/s0029 6-020-04726 -x) contains
supplementary material, which is available to authorized users.
* Melanie Sloan
mas229@medschl.cam.ac.uk
1 Behavioural Science Group, Institute ofPublic Health,
University ofCambridge, Forvie Site, Robinson Way,
CambridgeCB20SR, UK
2 Patient andPublic Involvement inLupus Research Group,
Institute ofPublic Health, University ofCambridge,
Cambridge, UK
3 The Louise Coote Lupus Unit, Guy’s andSt Thomas’, NHS
Foundation Trust, London, UK
4 LUPUS UK, St James House, Romford, Essex, UK
5 Behavioural andImplementation Science Group, School
ofHealth Sciences, University ofEast Anglia, Norwich, UK
6 Rheumatology Research Group, Institute ofInflammation
andAgeing, College ofMedical andDental Sciences,
University ofBirmingham, Birmingham, UK
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722 Rheumatology International (2021) 41:721–732
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Our previous research has found that diagnostic difficul-
ties and negative medical interactions can generate persisting
psychological damage and insecurity, particularly amongst
those who were met with disbelief or were given psychoso-
matic or mental health (MH) misdiagnoses [11, 16].
Despite the World Health Organisation (WHO) increas-
ingly recognising the importance of wellbeing, and encour-
aging governments to provide education and tools for self-
management and care in chronic diseases [17], many patients
with lupus report that there is limited self-management edu-
cation. They thus often rely on peers for knowledge transfer
and emotional support. Peer support from those who expe-
rience the same challenges of living with the same chronic
health condition [18, 19] is increasingly a focus of research.
Previous studies have identified a need to focus on QoL
and holistic care [20, 21], increased awareness of the wider
needs of this patient group [4, 5], and the impact of the
patient–physician relationship [16, 22].
Forum analyses are increasingly used in qualitative
research [23] as a cost-effective method of analysing the
experiences of thousands of patients to find common themes.
The LUPUS UK forum has over 25,000 members with mul-
tiple conversations and opinions of a large group of patients
who are communicating openly with peers. This forum anal-
ysis will build on our previous work [11, 16] with the aim
of giving these patients a wider combined voice, and iden-
tifying unmet needs, values, concerns and preferences, thus
enabling patient-centred improvements to be considered.
Methods
Participants
Demographic information is limited as the majority of par-
ticipants use pseudonyms. The site moderator, LUPUS UK,
estimates that the vast majority of active members are from
the UK and have SLE. The site also includes patients with
related autoimmune diseases such as undifferentiated con-
nective tissue disease (UCTD), Sjögrens, and in the diag-
nostic uncertainty stage. The analysis included all active
members of the forum. From November 2018 to January
2019, there were an average of 2649 active (posting at least
once) members per month representing 11.8% of the 22,484
members as of 6 February 2019.
Data collection andanalysis
Two methodological approaches were combined to study
this population. First, virtual ethnography [24], where seven
members of the research team were fully immersed in the
community, either as patient members or moderators. These
researchers had a total combined time in the community of
over 30years. Second, forum posts were analysed themati-
cally in reverse chronological order from October 2019 until
theoretical saturation was reached with no new concepts
emerging [25] (March 2019). This involved (1) developing
and agreeing a broad coding scheme, (2) coding the data,
(3) combining and comparing the posts/responses with other
quotes on the same theme, (4) refining and re-coding, (5)
identification of commonly occurring themes [25], and (6)
further review of selected relevant historical posts as far back
as September 2012. Particular attention was paid to deviant
findings to strengthen validity of the findings [26]. Ethical
approval was obtained through the Cambridge Psychology
Research Committee—PRE.2018.120. Permission to quote
individuals was obtained by LUPUS UK staff. Questions to
clarify that emerging themes fully reflected the members’
experiences, and later the draft paper, were posted on the
forum to discuss and agree key findings with the community.
Further details of methods, ethical considerations and
researcher reflexivity can be found in supplementary infor-
mation 1.
To ensure that the qualitative analysis also reflected the
quantities of subject matter posted, five co-authors carried
out content analysis of a month of forum posts each (ran-
domly generated from January 2016 to April 2019).
Results
The six most frequent types of posts (as a % of total posts)
were (1) asking for advice on symptoms, 18%; (2) negative
medical appointments/interactions, 17%; (3) medication/test
results queries, 15%; (4) general advice given/sought, 13%;
(5) emotional/mental health/struggling to cope, 8%; and (6)
search for diagnosis, 7%. The ratio of positive to negative
posts discussing medical interactions was 1:6.5.
The overarching theme was Invalidation in multiple
domains (medical, societal and self) of forum members’
lives. Further themes included: Uncertainty, Medical (mis)
communication and misunderstandings, Navigating health
systems and Resilience and Support.
Invalidation: medical
In addition to ensuring appropriate support and treatment,
a diagnosis was widely felt to confer personal, medical and
social acceptance, yet delays and misdiagnoses were fre-
quently reported.
While many members reported severe manifestations
of the disease including organ damage, early symptoms
reported on the forum were often non-specific, such as
migrating pain, severe fatigue, fevers and rashes. A desire
for physicians to persist in ‘joining the dots’ in pursuit of
the correct diagnosis was frequently expressed. Although
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723Rheumatology International (2021) 41:721–732
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some achieved prompt diagnosis, the diagnostic journey was
widely reported to be extremely invalidating and distress-
ing, with words including ‘unheard’, ‘rejected’, ‘shame’,
‘guilt’, ‘dismissed’, ‘desperation’, ‘fear’, ‘abandoned’ fre-
quently occurring, along with reports of a loss of dignity
and self-worth.
Some forum posts detailed how individual physicians pro-
vided compassionate support during the years in the ‘diag-
nostic wilderness’. However, a more frequent type of post
was when the continued search for a diagnosis was reported
to have led to misdiagnoses of health anxiety/hypochondria,
psychosomatic or mental health issues. Posts detailing these
misdiagnoses often expressed great distress and distrust, and
a perception that patients’ self-reported symptoms were not
always believed or validated, including post-diagnosis.
Patient quotes of experiences of medical invalidation,
including opposing validating experiences of a diagnosis
and supportive physicians, are shown in Table1.
Invalidation: societal
The frequent lack of medical clarity, a widespread lack of
knowledge about the disease and the invisibility of many
symptoms resulted in posts about limited understanding and
disbelief in the reality and severity of symptoms from patient
contacts and wider society, with members often being told
“but you don’t look sick’’. This was reported to have caused
difficulties with family, friends, work, and school, resulting
in posts about relationships being severely challenged and
sometimes failing.
Similar problems led to significant hardship and distress
when applying for and using welfare benefits and conces-
sions such as Blue Badges. Forum members often reported
being disadvantaged compared to more visible or widely
understood conditions such as cancer, rheumatoid arthritis,
diabetes and hypothyroidism, in terms of treatment, medical,
and social support systems.
Invalidation: self
The consequences of the organic disease itself were con-
siderable. Some members expressed a deep sadness and
felt that they were a reduced version of their previous self.
Many were unable to work, socialise, or fulfil their car-
ing roles as they would like. Forum members, particularly
those with young children, commonly felt guilt and lowered
self-worth. Managing and accepting these chronic diseases,
medications, limitations and building relationships with phy-
sicians was often felt to be hindered by traumatic diagnostic
journeys and by having a diagnosis that remained subject to
change, progression and uncertainty.
Fatigue was regularly described as extremely debilitating
and isolating, predominately due to causing an inability to
participate fully in life, but also due to the incomprehensibil-
ity of those who have not personally experienced it. Physi-
cians and people without chronic diseases expressing, or
implying, doubt that this pathological fatigue could be far
more profound than ordinary tiredness left many members
feeling inadequate and ‘lazy’.
Table 1 Medical invalidation/validation quotes
The importance of viewing symptoms holistically in achieving a diagnosis
The sense of blackness that would pass over me at appointments, fearing the nothing wrong statement or just ‘anxiety’. The despair of walking
away with no help still feeling very ill and with no life. Just that one consultant who looks deeper and changes things for the better… When
the dots are joined up it makes a big difference to quality of life. There are some great dedicated doctors out there and they really are trying
very hard to help us (Female, UK, 50s)
My final diagnosis was very quick…thanks to an amazingly observant GP – but in hindsight I realised I had had lupus for years before that but
because the symptoms all appeared separately nobody pieced the jigsaw together. Lupus is notoriously hard to diagnose because it affects
everybody differently and there are so many different symptoms (Female, 70s)
The ‘fight’ for validation of multi-system symptoms that fluctuate over time
You’re fine and then suddenly something is wrong and you know it, but instead of a straightforward test and answer, you have to fight to be
believed, then it goes this way and that from one department to another and back again and not everyone is on the same page and you have to
explain everything to every consultant every time (Female, England, 50s)
‘Relief’ and validation on diagnosis
For me it took about 10years to diagnosis…I kept thinking I was just a tired unmotivated person. It was a relief to get the diagnosis because
you stop thinking you are crazy or imagining symptoms (Female, US, 60s)
The psychological benefits of validation during the—often prolonged—diagnostic uncertainty phase
[GP] was the best example of a compassionate, intelligent and very wise Doctor giving me the wonderful care and sympathy despite no defini-
tive diagnosis. A positive Doctor gives as much psychological support as any drug (Female, UK, 60s)
Residual distress and anger towards physician(s) due to disbelief and invalidation during the diagnostic journey
Did my illness make me this unwell or did my battle to be heard make me this unwell, maybe the battle just depletes us… I just completed a
self referral for counselling. I think now I have some answers it’s time I dealt with the problems this journey has caused me. I’ve got such a
build up of hate and anger towards 1 doctor! (Female, England, 30s)
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Reductions in physical abilities were often compounded
by cognitive impairment, causing difficulties in work and
relationships. Changes to appearance caused by the disease
itself (for example, from skin involvement) and from medi-
cations (particularly weight gain from steroids) were also
discussed as distressing and highly damaging to self-esteem.
These features were often exacerbated by an internalisa-
tion of the invalidating attitudes of others. Many reported
that the initial disbelief they encountered from physicians
made them doubt their own judgement—even their ‘san-
ity’. The vast majority of forum posts following a diagno-
sis expressed great relief on having an explanation for their
symptoms: of validation and vindication.
Table2 includes participant quotes documenting the
emotional and psychological damage from societal and
self-invalidation.
Uncertainty
Living with an unpredictable multi-system disease subject
to relapsing, remission, progression and evolution of symp-
toms caused great uncertainty and difficulties in planning
and managing lives daily and long term.
A stable and unchanging diagnosis was widely considered
as being important to acceptance. Uncertainty seemed espe-
cially difficult to accept by the newly diagnosed, and they
were often guided by supportive posts from moderators and
experienced members.
A perceived lack of consistency in diagnostic criteria and
terminology—even within the same rheumatology depart-
ment—created great uncertainty and insecurity among
patients. There were multiple reports of a diagnosis that had
been removed or changed, and life-changing medications
withdrawn. This was often perceived to be due to a change of
rheumatologist, or an over-focus on (often inaccurate or out-
dated) test results, despite symptoms remaining unchanged.
Medical (mis)communications
andmisunderstandings
Members reported basic misunderstandings of the disease,
both by themselves and physicians, especially in the early
stages of diagnosis. Although some received clear explana-
tions, many felt they were given limited information, with
the forum frequently consulted on symptoms, test results
and medications.
The contents of face-to-face communication, clinic letters
and reports were frequently discussed. A failure to empa-
thise, to acknowledge patient concerns, and to include the
patient in the sharing of all results and reports were often
identified as a source of frustration and disempowerment.
Table 2 Societal and self-invalidation
Invalidation and loss of dignity from difficulties obtaining welfare (Personal Independence Payments –PIP) disability benefits
The whole [PIP] process is degrading and mentally painful. Why is it a matter of guilty until proven innocent I don’t know. Maybe we’ve
moved beyond the ‘treated with dignity and respect’ mantra..the feeling of being thought of as a scam artist or downright liar is worse than
losing the money (Female, England, 60s)
My PIP was stopped, we are barely surviving…British Gas are on my tail…motability given me a date to reclaim my car. I am tired, the way
and manner the PIP rug is pulled off one is horrible. I want to work but I’m not well enough…the stress that comes with the benefits system,
slowly chips your life away even before the lupus gets to you.(Female, UK, 30s)
Lack of understanding and societal support for lupus compared to more well-known diseases
I feel ashamed that I’ve thought it myself, that cancer would be better…it has such a huge lobby (researchers, charities, specialist status in
law…) and most of all, everyone has empathy for someone with cancer (Female, Scotland, 50s)
Impact of the changes to appearance and reduction in quality of life for patients and their families
The weight gain, hair loss, teeth loss. On and on and on! I feel so pathetic, and ugly, and embarrassed by my appearance, I try to walk tall and
act like I don’t care, but I do. It’s humiliating. The giving up all the activities I love. Missing out on so much and feeling I’m ruining my
husband’s life too (Female, USA, 60s)
Over-whelming fatigue and subsequent guilt and self-invalidation
Feel like the worst parent in the world, my poor kids…I’m sat there literally dying from fatigue…. It’s like wasting life …I just feel like giving
up…I feel so useless and look at the mess in the house and the kids in their pjs all day and feel like a useless mum (Female, England, 40s)
Suicidal thoughts and a loss of self-worth from lack of diagnosis and support
I’ve been in a very low place too when nobody seemed to understand what was wrong with me and worse still didn’t seem to care!! I felt
worthless. I too thought of ending my life and had to get emergency counselling as well as medication for severe depression. (Female, Scot-
land, 60s)
Feelings of worthlessness from invalidation and loss of former identity
At what point does one’s use in the world expire with this disease. So, if it takes away my love of walking, writing, thinking, functioning, being
free, spending quality time with my daughter, what is left of ’me’ and do I become a ’burden’…lost and worthless…my quality of life is
slowly dropping away—everything that I am seems to be disappearing in this horrible set of conditions I have and the awful way we have to
prod and poke the medical profession to help (Female, UK, 50s)
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725Rheumatology International (2021) 41:721–732
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Miscommunication was found to often exacerbate
other concerns. Labels such as UCTD and ‘incomplete’
lupus were sometimes felt to be poorly explained and not
a ‘proper’ diagnosis. While reassuring to some, ‘mild’
lupus was felt to be dismissive to many who reported that,
although they understood it may mean non-organ involve-
ment, it felt undermining given the extent of their life-
changing symptoms.
Many members accrued additional symptoms and
autoimmune diagnoses over time and largely accepted
that is the nature of autoimmunity. Some were given non-
inflammatory diagnoses such as fibromyalgia, functional
disorders or ME/CFS, usually as co-diagnoses which some
members accepted could be an accurate representation of
some symptoms. However, many strongly felt these that
were ‘fobbing off’ misdiagnoses given by physicians felt
to be ‘guessing’ due to insufficient knowledge of complex
autoimmunity, with little/no discussion, objective evi-
dence, or scientific rationale.
Table3 contains some Forum members’ quotes high-
lighting common issues with uncertainty and medical
communications.
Navigating health systems
Although some reported that support was quickly avail-
able, there were more frequent posts detailing difficulties
accessing medical support, ‘gatekeeper’ receptionists/GPs,
irregular and postponed appointments and declined refer-
rals. Patients and physicians were often perceived as being
trapped in an inefficient, over-burdened system. There was a
widespread sense of injustice that limited reserves of physi-
cal and mental energy were required not just to ‘fight’ the
disease, but also in overcoming barriers to obtaining medical
support, both pre- and post-diagnosis.
Geographical inequalities in care were regularly dis-
cussed. In particular, members in parts of Wales dis-
cussed a perception of poor local rheumatology services.
These members, and others, reported great distress—and
Table 3 Uncertainty, medical (mis)communications and misunderstandings
The desire for a named and acknowledged disease to explain life-changing symptoms
I just find it frustrating not to have a name for the disease that has pretty much ruined my life (Female, UK, 30s)
Difficulties from changing diagnoses
So after being told I had lupus, telling my employer and getting the sack over it, a 2nd rheumatologist said it was UCTD. No one has bothered
explaining anything (Female, Wales, 30s)
Great appreciation for physicians managing diagnostic uncertainty compassionately
He went on to say sorry… it gives you no answer but lovely to meet you and I wish you well and hope you find the doctor with the answers,
I’m sure it’s there it’s just knowing who to see. So still no answers but treated like a human being… could have hugged him… just plain
honesty and empathy and it was a heavenly change of experience. (Female, UK, 50s)
Frequent misunderstandings of these diseases leading to diagnostic delays and misdiagnoses
(GP) said if I had lupus my kidneys would be involved (Female, Canada, 60s)
He [GP] hadn’t heard of the dsDNA test [positive]… I was prescribed antidepressants…after frequent visits he concluded ‘you’re a glass half-
empty kind of person’. (Female, Scotland, 50s)
Difficulties interpreting and/or accessing test results
I don’t even know what tests each doctor has done. If I don’t ask they either don’t tell me or dazzle me with stuff I have no idea about they may
as well be speaking Chinese (Female, Scotland, 50s)
If a GP cannot interpret a result, that’s their problem- they shouldn’t use that as an excuse to withhold it from me. Likewise for a consultant to
withhold a result because they think I cannot be trusted with it is paternalism gone mad…I cannot tell you how much better I feel having got
the blood results in my hand – even if they aren’t the best. Being denied information about your own illness is completely undermining—and
wrong. (Male, Wales, 50s)
The importance to patients of compassionate, attentive communication verbally and in writing
I’ve just received my rheumy review letter and am really down and very tearful…feel hopeless and helpless suddenly. I’ve plummeted on
reading this cold letter…I know we are a miniscule (and clearly forgettable) person in their lives, they have such huge caseloads… but after
3–4months of waiting what they say and write afterwards means so very much (Female, UK, 50s)
The view that autoimmunity is widely misunderstood leading to over and misdiagnosis of non-organic syndromes
As I frequently drag my collection of body parts around multiple ‘ologies’ I do wonder when it was that I stopped being…well…a systemically
connected human body. I ‘m not denying that conversion or functional disorders exist…just that these labels are often too easily plucked out
of nowhere…often through lack of rigour, willingness or the time to get to the root cause of what I believe are some of the trickier symptoms
of autoimmune disease (in all their ugly guises) (Female, England, 60s)
I’m increasingly incensed and hope to lobby for the word functional to be challenged until all the established and newer methods of testing for
organic conditions are available to all in UK. Particularly for those of us in the devolved nations who can’t even access London testing due to
not having a right to an out of Scotland/Wales second opinion (Female, Scotland, 50s)
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726 Rheumatology International (2021) 41:721–732
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sometimes irreversible organ damage—with frequent
descriptions of being refused access to SLE specialists
due to ‘gate-keeper’ policies.
Personal characteristics were discussed as influencing
diagnosis, especially apparent among female members
perceiving that physicians may be more inclined to give
psychological/MH misdiagnoses like ‘anxiety’ and ‘stress
based on their gender and stage in life. As many became
symptomatic in the child-rearing years, the stress of ‘being
a new mum’, ‘having teenagers’, etc., were sometimes ini-
tially given as reasons for their symptoms, with symptoms
in older females often attributed to the menopause, age-
related decline and in one member ‘empty nest syndrome’.
However, although males are much in the minority as SLE
patients and on the forum, their conversations revealed that
their diagnostic journey was often no easier.
A proportion of UK patients reported that diagnostic/
care difficulties or NHS waiting times led them to seek a
diagnosis from SLE specialists privately, creating diag-
nostic and treatment inequalities between socioeconomic
groups.
Much appreciation was expressed for rheumatologists
who took the holistic view of the patient and co-ordinated
highly effective multi-disciplinary care. Conversely, frus-
tration was expressed when symptoms were not seen sys-
temically, or medical specialisms seemed to treat the patient
as a collection of unconnected body parts. Some members
complained that they felt passed ‘like an unwanted parcel’
around the ‘ologies’ with ‘merry go rounds’ of superficial
investigations that failed to take account of the complex and
difficult to detect manifestations of SLE/CTDs. Members
reported being regularly discharged with ‘reassurance’, yet
leaving them with debilitating and/or concerning unex-
plained symptoms, until tests verified the patients’ experi-
ences. This occurred both pre- and post-diagnosis and added
to the perception of invalidation and self-reported symptoms
not being believed.
Table4 contains quotes of positive and negative experi-
ences of accessing appropriate care, including multidiscipli-
nary care, inequalities and administrative failings.
Resilience andsupport
Close working relationships with physicians were reported
by many members, often with such an overwhelming feeling
of relief and gratitude to the clinician(s) who diagnosed and/
or gave them compassionate care that they were frequently
described in terms of being ‘stars’ or ‘heroes’ with a feeling
of great security and attachment.
Honest and empathetic communication from physicians
was highly valued, with many posts highlighting the impor-
tance of listening with compassion to a patient’s subjective
experiences. The importance of the role that allied health
professionals, such as nurses and physiotherapists, play was
discussed. Members reported many positive interactions,
and a perception that such professionals may have more time
to focus on listening to the patient, and helping with the
practical challenges of the disease.
Some members reported how diagnosis, medical sup-
port and acceptance gave them strength and allowed them
to validate their own symptoms by listening to their bodies
and pacing activities. Many members also detailed support
from family members and friends, both practical and emo-
tional. Although lives were clearly substantially altered by
the disease, there were regular inspiring posts by members
who were finding a sense of purpose and achievement by
adapting activities around the limitations of the disease.
The forum itself tended to be discussed in extremely posi-
tive terms. It performs several complementary functions,
including facilitating friendships and reducing isolation
and loneliness, with active moderators ensuring a safe and
respectful environment. Members shared symptoms and
problems and exchanged knowledge, research papers and
tips on managing both the disease and medical encounters.
Table 4 Navigating health systems
The impact of cancellations and difficulties accessing medical care
To them it’s a cancelled appointment, to me it’s my life (Female, England, Teens)
I’ve no letter and no booking for my next appointment. There are no lupus nurse appointments and no one’s answering the telephone. I know
things are terrible in hospital but it doesn’t alter how horrible it feels to be abandoned…the horrible irony of it all is if we got more preventa-
tive services before we got critical our care would be a lot cheaper and we’d be more likely to be working…I just feel too tired to keep on
saying the same thing over and over. (Female, UK, 50s)
Views on inequalities of care
I also live in wales and can echo the woeful lack of awareness, facilities, therapies, access to care and support! (Female, Wales, 30s)
Apart from being female, it was pretty obvious that me being relatively poor, impaired by trauma, illness, brain fog and being unable to think
quickly on my feet made it near impossible to get the time required for appropriate SLE care (Female, Australia, 50s)
Experience of co-ordinated multidisciplinary care
Despite the negative bloods, I had a few years of remarkably enlightened consultants who kept each other in the loop and worked together on it
(Female, UK, 40s)
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727Rheumatology International (2021) 41:721–732
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This often led to improved medical confidence and medical
relationships.
Table5 contains forum member quotes highlighting the
great value placed on empathetic physicians and the LUPUS
UK forum in providing compassionate support.
Figure1 gives examples of three forum members’ diag-
nostic journeys, highlighting the damage caused by delayed
diagnosis and ‘disbelieving’ physicians, and the redeeming
impact of supportive physicians and peers.
Discussion
A feeling of relief was usually described as the overwhelm-
ing emotion on diagnosis. Considering SLE is often a life-
changing, sometimes life-threatening, incurable disease with
many unpleasant manifestations, this is a strong indication of
the degree of trauma often suffered on the journey to diag-
nosis and the desperation for medical help and validation.
This research has identified that many forum members expe-
rienced a distressing combination of life-changing symptoms
with often traumatic diagnostic journeys and a perception of
invalidation in multiple areas of their lives.
Initial symptoms were often reported on the forum as
appearing sequentially and insidiously, with patient and
physician encountering difficulty in identifying an under-
lying disease process frequently leading to misdiagnoses.
Those in the ‘not yet correctly diagnosed’ stage are clearly
a highly vulnerable, often medically neglected group, at risk
of potentially irreversible damage to their physical and men-
tal health.
SLE is often reputed to be an ‘invisible’ disease with both
social and medical diagnoses seemingly reliant upon visual
indicators of disease, with an often prolonged period of time
before symptoms are validated by a diagnosis [27]. Valida-
tion is a key theme identified in both the existing literature
and this research. Santiago etal. found that invalidation in
all rheumatic diseases was associated with psychological
factors, loneliness and greater pain, and requiring interven-
tion [28]. Our research has added greater depth to previous
research findings, that the lack of perceived consideration
for subjective symptoms leaves many patients feeling disbe-
lieved and dismissed [11, 16, 29, 30] and remains an ongo-
ing issue. Price and Walker found that for some, the SLE
diagnostic journey can reflect the nature of the disease in
terms of uncertainty and ‘chaos’ [31]. Our study is in agree-
ment, and has provided additional evidence, to findings of
studies of other rare diseases that the search for diagnosis
can be very distressing and finally obtaining a diagnosis can
be extremely validating [32].
In agreement with our previous research [11, 16], we
found that mental health/psychosomatic misdiagnoses were
perceived as particularly damaging, resulting in posts dem-
onstrating insecurity and fear of physician disbelief even
in subsequent positive medical relationships. Many forum
participants reported that they eventually lost their self-
belief and questioned their own sanity with examples given
of how this led them to avoid seeking medical help. This
was also found in a study of parents of children with auto-
inflammatory disease where they reported doubting their
own judgement in the face of medical disbelief. As in our
study, this generated a persisting distrust of clinicians even
after diagnosis [33].
Many patients reported that referrals and diagnosis were
delayed by common misunderstandings, including that
lupus can only be diagnosed in females with positive anti-
dsDNA, ANA, malar rash and kidney damage. Previous
research demonstrates longer delays to diagnosis reported
Table 5 Resilience and support
Supportive medical relationships
Mine (‘star GP’) once phoned me at 7pm on a Friday night to check I was OK! …he always books me in for his last appointment as he doesn’t
want me to feel rushed (Female, Scotland, 40s)
My wonderful consultant watched as I cried in her office [on dx with SLE]. I asked why she believed me when I’d been dismissed as an awk-
ward patient ‘because when a patient tells me something I choose to believe them’ (Female, England, 30s)
I feel I have had the best of treatment and have been shown understanding, compassion and also been involved in the development of my treat-
ment plan. (Female, UK, 70s)
Learning to adapt to the limitations of the disease, with compassionate guidance from clinicians
I went to get some physio and she was so positive ‘we will get you back into shape’ and she was a great listener…. I thought I really need
encouragement right now and positive speak (Female, Wales, 50s)
I was very tearful…she [lupus nurse] was very kind…held my hands and said all of this has unsettled your Sjögrens, no wonder you feel so
low. Walking out of there I already felt a little uplifted. Nurse did not mention antidepressants, give an eye roll, look at her watch…she gave
compassion, understanding and reassurance. (Female, UK, 60s)
The value of peer support and understanding obtained from the forum
We all hit that wall of despair, but if we let each other know, as you all always do, that there are those who care, who can lift us for the moment
so we can shake it off and keep going, I think it helps see us through…I can’t tell you how many times I’ve read posts and have cried, been so
angered, or laughed, and felt inspired by all of you! (Female, 60s, US)
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728 Rheumatology International (2021) 41:721–732
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Diagnosc Difficules
Female, 30s Female, 60s Female, 40s
Impact of the disease and/or diagnosc difficules
Benefits of peer support and effecve, compassionate medical care
The doctor I used to see was so
adamant that my symptoms were
psychosomac…I paid for a lot of
private therapy.
Medics all insisted there was NO UNDERLY ING condion
involved in my health stuff. Being a bit in awe of medics and
condioned by tradional paternalisc health care culture I
did start by respecng them, then felt conflicted, a sense I
was actually being abused by a system that wasn’t
considering my case holiscally…isolaon, anger and fear
grew… GP was irritated and indignant when I insisted on
rheumy referral. As I thanked her and turned to leave I said I
don’t want to have lupus, I just think it’s about me we find
out what I do have.
Finally diagnosed 2 weeks ago
with lupus, fibro and Sjogrens
aer almost 5 yrs, 2 GP
surgeries and a second opinion
from a great rheumy team.
I can see how damaging this
process has been for my
confidence. Things went on so
long that I started to doubt my
own sanity!...I completely lost
the ability to stand up for myself
or discuss my concerns.
The medical PTSD caused by those horrible 40
years [undiagnosed] connues to haunt me so
badly that I am constantly expecng the NHS to
wash it’s hands of me…irraonal but inevitable
aer decades of negligence… Now I have to
manage it hour by hour, negligence, suffering,
trauma
It’s been a tough bale, not just
with physical problems, pain,
chronic fague and depression but
psychologically draining being made
to feel like I’m a whinging
hypochondriac who le many many
GP visits in floods of tears being told
my pain was in my head.
The forum has helped keep my confidence
up long enough to make sure I’m really
being heard…Having a doctor who listens
makes such a huge difference. And being
on here has really helped me to remember
that I’m not crazy and I know my own
body.
Find myself well and truly locked into
an NHS muldisciplinary approach...I
keep pinching myself…I am clearly
benefing from this approach [but] I
sll can’t even begin to feel safe or
secure…anxiety will never leave
me..years of therapy have helped..but
what REALLY HELPS is your good
company [forum] we all have so much
in common
You have all given me the strength to
follow my insnct and persevere to get a
2nd opinion..not only did [rheumatologist]
make me feel like my symptoms were real
he also gave posivity to look forward to
having some kind of future when I felt like
throwing the towel in. If it wasn’t for this
group I don’t think I would have had the
confidence to ask for a second opinion and
would sll have been stuck in a really dark
place. Who knew a mere mortal could
queson an expert’s opinion
Fig. 1 Examples of three typical diagnostic journeys
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729Rheumatology International (2021) 41:721–732
1 3
in children, males and late-onset cases [34], and in ANA-
negative patients [11]. Although SLE is more prevalent in
females of child-bearing years with a Female:Male ratio of
9:1 the disease affects both genders, all ages and there are
multiple other presentations, symptoms and immunological
criteria for diagnosis [1, 35, 36].
The complexity and varied presentations of SLE and
other related autoimmune diseases causes difficulty with
the desire for clarity and certainty [37, 38]. Uncertainty and
the strongly expressed desire for a clear diagnosis may be
better managed by improved physician communication as to
the unpredictability and evolving nature of these diseases.
Lack of definitive diagnosis or delay in provision of treat-
ment for debilitating symptoms is distressing for patients
yet may have a well-considered medical reason, for exam-
ple, the necessity to consider other potential causes and the
balancing of risks versus benefits of medication. This forum
analysis has demonstrated the great appreciation for those
physicians who clearly and compassionately communicate
the rationale behind these decisions and provide support
with symptoms, regardless of presumed cause. Reports of
dismissal and disbelief by clinicians unable to discover a
cause for a new symptom were frequent, and their offers
of reassurance rarely inspired confidence. Even those with
long-standing disease reported misdiagnoses or no explana-
tion—or treatment—for new, rarer [3941] manifestations,
particularly from those physicians who were felt to focus
only on the more common symptoms affecting joints, skin
and kidneys. Early signs of rarer manifestations were often
under-investigated and undetected, until they progressed to
become obvious on current (often perceived as inadequate)
testing, sometimes coinciding with irreversible organ dam-
age, including sight or hearing loss, intestinal failure and
brain damage.
Improved communication and support for any co-diagno-
ses may also assist in acceptance and trust in cases where a
co-diagnosis is accurate and helpful in terms of differentiat-
ing from active SLE for disease and symptom management.
While acknowledging the very real and distressing nature
of conditions with no current definitive testing, such as ME/
CFS and fibromyalgia, many forum participants remained
extremely sceptical as to the validity and acceptability of
these as co-diagnoses in the context of autoimmune diseases,
when pain, fatigue and sensory disturbance are also a regular
manifestation of the primary disease.
There was a strong perception of geographical, socioeco-
nomic, gender, age and disease inequalities of diagnosis and
care, particularly regarding the Welsh gate-keeper policy.
Following the BSR guidelines [1] could reduce multiple ine-
qualities by improving knowledge and consistency in refer-
rals, diagnosis and management. The perceived lower level
of medical and social support compared to other diseases
needs consideration. Although the changes to the British
welfare system have adversely impacted many chronically
diseased patients, the invisibility and relapsing–remitting
nature of the disease, the lack of diagnostic certainty and
lack of understanding regarding SLE by both physicians and
welfare assessors, potentially causes greater problems for
these patients accessing appropriate financial support. These
differentials of power are reported in previous studies [42,
43], with difficulties accessing welfare during diagnostic
journeys, potentially due to distrust in the welfare system of
those lacking a definite diagnosis [42], and Whitehead and
Williams hypothesising that female lupus patients struggle
to be taken seriously, being ‘doubly burdened’ by gender and
diagnostic uncertainty [43].
In addition to difficulties obtaining diagnosis and care,
forum members also discussed the many negative conse-
quences of the disease on their quality of life. Severe fatigue,
pain and cognitive difficulties were most regularly men-
tioned, often causing difficulties with employment and rela-
tionships. As with other studies of chronic illness, we found
that self-worth and self-identity are frequently damaged due
to an inability to fulfil social [44] and caring roles.
This study has identified that the support provided by
the forum, LUPUS UK and by empathetic physicians, fam-
ily and friends helps mitigate invalidation and uncertainty.
Clinicians providing emotional support and listening to
patient’s symptoms non-judgmentally is highly valued by
forum members. By presenting the patient perspective in
this paper, we hope that clinicians will further consider the
great impact on patients of physician communication styles
and validation of patient symptoms. Irrespective of the final
diagnosis, patients need to feel that their concerns are being
taken seriously and that they are supported in managing their
symptoms. This may mean sign posting to other services to
help support the patient if the clinic lacks time/experience
in the management of all symptoms, particularly those that
may be multifactorial in origin.
Emotional support and the sharing of experiences is
an important function of all patient groups, whether face-
to-face or online and was highly valued by this group of
patients. In agreement with other studies, we found that peer
support helped people through interactions with others in
similar situations, often by promoting self-esteem, improv-
ing self-worth [45], and reducing isolation [27]. In addi-
tion, we identified that group norms of mutual support and
empathy were also found to enhance emotional resilience.
Our findings were in line with Basu and Dutta’s study [46]
that online communities can increase medical knowledge
through health-related discussions.
Many of the LUPUS UK forum members demonstrated
a high level of medical knowledge and shared up-to-date
research, with multiple posts detailing how knowledge and
empowerment gained through the forum assisted in diagno-
sis and improved care. However, the large quantity of posts
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730 Rheumatology International (2021) 41:721–732
1 3
requesting information on deciphering blood test results,
medication enquiries, symptoms and misunderstandings of
the disease, particularly among new members, may point to
the need for more information and clearer explanations from
clinicians, especially at diagnosis.
A strength of this study is that the forum enabled a much
larger quantity of viewpoints to be analysed than traditional
qualitative methods. Views stated are more likely to be free
from social desirability bias as there was no researcher or
physician influence on conversational direction [45]. The
24-h forum accessibility means that experiences and emo-
tions are often reported immediately so less subject to recall
bias. The limitations are that the results may not be repre-
sentative of the wider SLE population due to demographic
and experience bias. As with all qualitative research, the
results cannot be generalised to the wider SLE population,
although the large size of this group makes this less of a
limitation than in traditional interview-focused research.
There is limited demographic information, diagnoses are
self-stated and cannot be confirmed, and disease severity,
including organ involvement, is not always apparent from the
conversations. Members may be those with more negative
experiences who are in need of greater peer support. Nega-
tive and invalidating medical experiences may be reported
more frequently than positive ones as patients seek valida-
tion from peers. In addition, patients who have had poorer
explanations or persistent confusion about their disease
may be more likely to post comments. While a limitation
of forum analyses is the inability to request clarification on
members’ experiences, we were able to reduce this limita-
tion by discussing the research on the forum, posing ques-
tions and sharing research findings to ensure the themes
identified were validated by the community.
In conclusion, whilst we cannot extrapolate these results
to all SLE/systemic autoimmune patients, the overarching
theme is chronic invalidation with patients who often felt
poorly served—and in some cases, damaged—by health
systems, with fragmented care and a lack of knowledge
about the disease amongst society and many physicians.
Support for the much-reduced quality of life could be
improved by more access to specialist support (e.g. spe-
cialist nurses, physiotherapy and psychosocial support),
signposting of all patients towards relevant charities, and
developing additional methods of self-management edu-
cation and peer support. Improved support for all patients
with initially medically unexplained symptoms is an urgent
requirement; not only to avoid damage from psychogenic
misdiagnoses, but also because a medical—and potentially
treatable—explanation was usually subsequently discov-
ered in these patients after more detailed testing or consul-
tation with appropriate specialists. This study highlights
the importance of earlier diagnosis, cross-specialism sup-
port and empathetic communication. In addition, there is
a need for more appropriate and prompt investigations in
those diagnosed, as not all new symptoms should be auto-
matically attributed to the primary autoimmune disease yet
ANY new sign or symptom could be related to systemic
autoimmunity.
Acknowledgements This research was carried out with frequent
discussion and active input from patients, LUPUS UK and rheuma-
tologists. Multiple patients contributed throughout the research with
a group of 4 active forum members regularly communicating with the
wider research team to discuss forum posts, patient priorities, emerg-
ing themes and share knowledge. All interested parties were involved
throughout the research, including in reviewing the paper pre-publica-
tion. The draft results and discussion sections of this paper were posted
on the forum for members’ suggestions, comments and approval, thus
ensuring the overall community ‘voice’ was represented as well as
possible. With great thanks to all the forum members whose ideas,
conversations and support for more research led to this study.
Funding This research was part of a wider study funded by LUPUS
UK.
Compliance with ethical standards
Conflict of interest The authors declare there are no conflicts of inter-
est.
Ethical approval Ethical approval was obtained through the Cambridge
Psychology Research Committee. PRE.2018.120.
Consent to participate A participant information sheet was made avail-
able on the forum. Consent to use individual forum quotes was obtained
by LUPUS UK staff (CW).
Open Access This article is licensed under a Creative Commons Attri-
bution 4.0 International License, which permits use, sharing, adapta-
tion, distribution and reproduction in any medium or format, as long
as you give appropriate credit to the original author(s) and the source,
provide a link to the Creative Commons licence, and indicate if changes
were made. The images or other third party material in this article are
included in the article’s Creative Commons licence, unless indicated
otherwise in a credit line to the material. If material is not included in
the article’s Creative Commons licence and your intended use is not
permitted by statutory regulation or exceeds the permitted use, you will
need to obtain permission directly from the copyright holder. To view a
copy of this licence, visit http://creat iveco mmons .org/licen ses/by/4.0/.
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... The body itself constitutes an individual, social and existential experience (29) which is associated with the physical, life-changing symptoms of lupus (18,30), and the emotions generated by the daily challenges to well-being and the extra effort needed to move forward in life (14,31). This is a first attempt to analyze the experience of lupus as a bodily experience, uncovering the need for more in-depth interpretative anthropological studies on this subject. ...
... Invisibility is a widely documented aspect of lupus and is central to the course of care that patients undergo (31)(32)(33). Not only invisibility refers to the symptoms, but it also indicates the underlying suffering: patients are invalidated (31), misunderstood, and stigmatized by their family, friends, and physicians, reinforcing their sense of isolation (16,18,31). ...
... Invisibility is a widely documented aspect of lupus and is central to the course of care that patients undergo (31)(32)(33). Not only invisibility refers to the symptoms, but it also indicates the underlying suffering: patients are invalidated (31), misunderstood, and stigmatized by their family, friends, and physicians, reinforcing their sense of isolation (16,18,31). ...
Article
Objective: Systemic lupus erythematosus (SLE) disproportionately affects Latin Americans and Latinos (La&L), with worse outcomes compared to non-minority populations. Understanding patients' views is critical to provide culturally competent care. The objective of this research is to analyze lived experiences with SLE from comments made by La&L patients, and their relatives and friends, on the public Facebook group Hablemos de Lupus ("Let's Talk about Lupus"). Methods: De-identified narratives posted as a reaction to the most popular resources shared by the page were extracted with the Facepager application. We conducted a thematic analysis under an interpretative medical anthropology framework. Results: Five core themes emerged from social media comments: lived experiences with lupus, religious/spiritual thoughts, metaphors, heredity, and experiences of family and friends. Being diagnosed with lupus is perceived as a life-changing event. The fluctuating course of the disease causes uncertainty and the perception of invisibility within the patient's social circle generates feelings of being misunderstood. Faith and spiritual thoughts are coping strategies. Patients use metaphors about the disease's meaning and their lived experiences (the purple butterfly, not belonging, bellicose discourse) to communicate with others. Relatives and friends are impacted by their loved one's suffering. Conclusion: Patients perceive lupus as an unpredictable illness and use metaphors to foster empathy and communicate their experiences to others. Religion is as important as medical treatment to cope with the disease. Suffering extends to family and friends. Findings can be used to improve physician-patient communication and lupus education campaigns for the La&L population.
... A particular concern was the reduction in access to the prompt care necessitated by the fluctuating and potentially life-threatening nature of some rheumatological conditions [23], and of key importance for medical security and trust [15]. The extensive self-management reported by some participants, including of major disease symptoms, was perceived to have arisen from pandemic-increased barriers to care rather than through choice, or education and clinical support as recommended by Williams et al. [24] Our study has further highlighted the importance of charities [25] and rheumatology nurses in providing support and empowerment, reducing isolation and disseminating information on disease, shielding and vaccinations. ...
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Abstract Objective To better understand rheumatology patient and clinician pandemic-related experiences, medical relationships and behaviours in order to help identify the persisting impacts of the COVID-19 pandemic and inform efforts to ameliorate the negative impacts and build upon the positive ones. Methods Rheumatology patients and clinicians completed surveys (patients n = 1543, clinicians n = 111) and interviews (patients n = 41, clinicians n = 32) between April 2021 and August 2021. A cohort (n = 139) of systemic autoimmune rheumatic disease patients was also followed up from March 2020 to April 2021. Analyses used sequential mixed methods. Pre-specified outcome measures included the Warwick–Edinburgh Mental wellbeing score (WEMWBS), satisfaction with care and healthcare behaviours. Results We identified multiple ongoing pandemic-induced/increased barriers to receiving care. The percentage of patients agreeing they were medically supported reduced from 74.4% pre-pandemic to 39.7% during-pandemic. Ratings for medical support, medical security and trust were significantly (P <0.001) positively correlated with patient WEMWBS and healthcare behaviours, and decreased during the pandemic. Healthcare-seeking was reduced, potentially long-term, including from patients feeling ‘abandoned’ by clinicians, and a ‘burden’ from government messaging to protect the NHS. Blame and distrust were frequent, particularly between primary and secondary care, and towards the UK government, who <10% of clinicians felt had supported clinicians during the pandemic. Clinicians’ efforts were reported to be impeded by inefficient administration systems and chronic understaffing, suggestive of the pandemic having exposed and exacerbated existing healthcare system weaknesses. Conclusion Without concerted action—such as rebuilding trust, improved administrative systems and more support for clinicians—barriers to care and negative impacts of the pandemic on trust, medical relationships, medical security and patient help-seeking may persist in the longer term.
... However, telemedicine's suitability, acceptability and safety in rheumatology has yet to be ascertained. The majority of rheumatology studies have focussed on RA, and there is limited evidence relating to the rare autoimmune rheumatic diseases [7,8] such as lupus or systemic sclerosis, which can have life-threatening [9], yet less visible [10] manifestations. ...
Article
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Objectives The Covid-19 pandemic necessitated a rapid global transition towards telemedicine; yet much remains unknown about telemedicine’s acceptability and safety in rheumatology. To help address this gap and inform practice, this study investigated rheumatology patient and clinician experiences and views of telemedicine. Methods Sequential mixed methodology combined analysis of surveys and in-depth interviews. Between and within-group differences in views of telemedicine were examined for patients and clinicians using t-tests. Results Surveys (Patients n = 1,340, Clinicians n = 111) and interviews (Patients n = 31, Clinicians n = 29) were completed between April 2021 and July 2021. The majority of patients were from the UK (96%) and had inflammatory arthritis (32%) or lupus (32%). Patients and clinicians rated telemedicine as worse than face-to-face consultations in almost all categories, although >60% found it more convenient. Building trusting medical relationships and assessment accuracy were great concerns (93% of clinicians and 86% of patients rated telemedicine as worse than face-to-face for assessment accuracy). Telemedicine was perceived to have increased misdiagnoses, inequalities and barriers to accessing care. Participants reported highly disparate telemedicine delivery and responsiveness from primary and secondary care. Although rheumatology clinicians highlighted the importance of a quick response to flaring patients, only 55% of patients were confident that their rheumatology department would respond within 48 hours. Conclusion Findings indicate a preference for face-to-face consultations. Some negative experiences may be due to the pandemic rather than telemedicine specifically, although the risk of greater diagnostic inaccuracies using telemedicine is unlikely to be fully resolved. Training, choice, careful patient selection, and further consultation with clinicians and patients is required to increase telemedicine’s acceptability and safety.
... Several well-known psychiatric syndromes are observed in patients with NPSLE, which vary from mild mood disorders or cognitive dysfunction to paroxysmal confusional states and p s y c h o s i s [ 6 ] . H o w e v e r , a l o n gs i de t h e s e o v e r t neuropsychiatric manifestations, different patterns of subtle psychological suffering might be underrecognized in patients with SLE and might not be just simple bystanders in the disease course [7][8][9]. ...
Article
Full-text available
Purpose of Review To deepen the comprehension of the role of specific psychological conditions in the pathogenesis and in the treatment of systemic lupus erythematosus (SLE). Specifically, the present comprehensive review aims at examining the association between SLE, alexithymia (AT)—a personality construct referring to the inability to identify, describe, and express sensations, emotions, and physical state—and post-traumatic stress disorder (PTSD), to infer potential biological relationships between these psychopathological issues and disease course, and to draw up a research agenda on gray areas of these topics. Recent Findings Whereas several studies document the presence of neuropsychiatric symptoms in patients with SLE, psychological distress, alexithymia, and post-traumatic manifestations are usually neglected by healthcare professionals and poorly investigated in research contexts. However, the interplay of these aspects, which affect physiologic stress coping mechanisms, potentially plays an important role in SLE pathogenesis. In particular, research documents that cytokine repertoire pattern alteration and hypothalamic–pituitary–adrenal axis impairment leading to inflammation and pain represent the main links between emotional health and immunity. Summary AT and PTSD seem to be common in patients with SLE and account for multiple aspects of SLE-related morbidity. Furthermore, abnormal processing of stressful stimuli as hallmarks of PTSD and AT might promote neuroendocrine dysfunction and dysregulated immunity, thus contributing to the pathogenesis of SLE. A comprehensive, multidisciplinary clinical approach, based on a cooperation between immunologists, rheumatologists, neurologists, and mental health professionals, is crucial to promote patients’ global health.
Article
Increasing evidence reveals the damaging impact of having one's chronic pain symptoms invalidated through disbelief, discrediting, and critical judgement. In other instances, a caregiver's over-attentiveness to the daily tasks of individuals with pain can be problematic, potentially undermining rehabilitation. The aim of this study was to develop an instrument to measure different aspects of invalidation perceived by people with chronic pain. Item generation was informed through literature review and a thematic analysis of narratives from 431 peer-reviewed articles. The crowdsourcing platform Prolific was used to distribute survey items to participants. In Study 1A, Principal Component Analysis was performed on data from 302 respondents, giving rise to 4 subscales, including: Invalidation by the Self, Invalidation by Immediate Others, Invalidation by Healthcare Professionals, and Invalidation by Over-attentive Others. Confirmatory Factor Analysis of data collected from aonther 308 individuals in Study 1B supported the 4-factor model of the Pain-Invalidation Scale (Pain-IS) and identified a best-fit model with 24 items. The Pain-IS was further validated in another 300 individuals in Study 2. The Pain-IS demonstrates sound psychometric properties and may serve as a valuable tool for use by clinicians in the detection of pain-invalidation issues, as a first step in patient pain management. Perspective. Links between pain-invalidation and pain levels, as well as functional detriment, highlight the importance of having one's chronic pain experience heard, believed and accepted. The Pain-Invalidation Scale is designed to identify domains where invalidation of the patient's pain should be addressed to promote emotional processing, treatment adherence and improved outcomes.
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Objective To explore the self-reported impact of the COVID-19 pandemic on changes to care and behaviour in UK patients with systemic autoimmune rheumatic diseases, to help ensure that patient experiences are considered in future pandemic planning. Methods This was a longitudinal mixed methods study, with a cohort completing baseline surveys in March 2020 and follow-up surveys in June 2020 (N = 111), combined with thematic analysis of the LUPUS UK forum and participant interviews (N = 28). Results Cancellations of routine care and difficulties accessing medical support contributed to some participants deteriorating physically, including reports of hospitalisations. The majority of participants reported that fear of COVID-19 and disruptions to their medical care had also adversely impacted their mental health. Feeling medically supported during the pandemic correlated with multiple measures of mental health and perceptions of care, including the Warwick-Edinburgh Mental Wellbeing Score (r = 0.44, p = 0.01). Five themes were identified: 1. Detrimental reduction in care; 2. Disparities in contact and communication, (medical security vs abandonment sub-theme); 3. Perceived and actual endangerment; 4. The ‘perfect storm’ of reduced clinician ability to help, and increased patient reticence to seek help; and 5. Identifying the patients most vulnerable to reduced medical care. Conclusion The diversion of resources away from chronic disease care was perceived by many participants to have caused adverse outcomes. Fear about increased vulnerability to COVID-19 was high, contributing to healthcare-avoidant behaviours. This study also highlights the influence of clinician accessibility and patients feeling medically supported on multiple measures of physical and mental health.
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Full-text available
Objective To explore the impact of patient-physician interactions, pre- and post-diagnosis, on lupus and undifferentiated connective tissue disease (UCTD) patients’ psychological well-being, cognitions and healthcare-seeking behaviour. Methods Participants were purposively sampled from the 233 responses to a survey on patient experiences of medical support. Twenty-one semi-structured interviews were conducted and themes generated using thematic analysis. Results The study identified six principal themes: 1. The impact of the diagnostic journey; 2. The influence of key physician(s) on patient trust and security, with most participants reporting at least one positive medical relationship; 3. Disparities in patient-physician priorities, with patients desiring more support with Quality of Life (QoL) concerns; 4. Persisting insecurity and distrust, which was prevalent, and largely influenced by previous and anticipated disproportionate (often perceived as dismissive) physician responses to symptoms, and experiences of widespread inadequate physician knowledge of systemic autoimmune diseases; 5. Changes to healthcare-seeking behaviours, such as curtailing help-seeking or under-reporting symptoms; and 6. Empowerment, including shared medical decision making and knowledge acquisition, which can mitigate insecurity and improve care. Conclusion Negative medical interactions pre- and post- diagnosis can cause a loss of self-confidence and a loss of confidence and trust in the medical profession. This insecurity may persist even in subsequent positive medical relationships and should be addressed. Key physicians implementing empowering and security-inducing strategies, including being available in times of health crises and validating patient- reported symptoms, may lead to more trusting medical relationships and positive healthcare-seeking behaviour.
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Shrinking lung syndrome (SLS) is a pulmonary complication of systemic lupus erythematosus (SLE) characterized by dyspnea, pleuritic chest pain, and progressive decrease in lung volumes with no evidence of pleural or interstitial disease on chest CT. We present a 51-year-old female with a 14-year history of SLE with symptoms of progressive shortness of breath, pleuritic chest pains, low grade fevers, and productive cough which was unresponsive to multiple courses of antibiotics. After careful review of her course of SLE and timeline of symptoms, she was diagnosed with SLS. Even though rare, clinicians should have a high suspicion of SLS in patients with a long-term history of SLE and worsening dyspnea. Early treatment can be initiated to help reduce long-term morbidity and mortality and maintain the quality of life.
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Objectives. The aim was to explore patient experiences and views of their symptoms, delays in diagnosis, misdiagnoses and medical support, to identify common experiences, preferences and unmet needs. Methods. Following a review of LUPUS UK’s online forum, a questionnaire was posted online during December 2018. This was an exploratory mixed methods study, with qualitative data analysed thematically and combined with descriptive and statistically analysed quantitative data. Results. There were 233 eligible respondents. The mean time to diagnosis from first experiencing symptoms was 6 years 11 months. Seventy-six per cent reported at least one misdiagnosis for symptoms subsequently attributed to their systemic autoimmune rheumatic disease. Mental health/nonorganic misdiagnoses constituted 47% of reported misdiagnoses and were indicated to have reduced trust in physicians and to have changed future health-care-seeking behaviour. Perceptions of physician knowledge and listening skills were highly correlated with patient ratings of trust. The symptom burden was high. Fatigue had the greatest impact on activities of daily living, yet the majority reported receiving no support or poor support in managing it. Assessing and treating patients holistically and with empathy was strongly felt to increase diagnostic accuracy and improve medical relationships. Conclusion. Patient responses indicated that timely diagnosis could be facilitated if physicians had greater knowledge of lupus/related systemic autoimmune diseases and were more amenable to listening to and believing patient reports of their symptoms. Patient priorities included physicians viewing them holistically, with more emotional support and assistance in improving quality of life, especially in relation to fatigue.
Article
Full-text available
Objectives To explore patient experiences and views of their symptoms, delays in diagnosis, misdiagnoses, and medical support, to identify common experiences, preferences and unmet needs. Methods Following a review of LUPUS UK’s online forum, a questionnaire was posted online during December 2018. This was an exploratory mixed methods study with qualitative data analysed thematically and combined with descriptive and statistically analysed quantitative data. Results There were 233 eligible respondents. Mean time to diagnosis from first experiencing symptoms was 6 years 11 months. Seventy-six percent reported at least one misdiagnosis for symptoms subsequently attributed to their systemic autoimmune rheumatic disease. Mental health/non-organic misdiagnoses constituted 47% of reported misdiagnoses and were indicated to have reduced trust in physicians and to have changed future healthcare-seeking behaviour. Perceptions of physician knowledge and listening skills were highly correlated with patient ratings of trust. The symptom burden was high. Fatigue had the greatest impact on activities of daily living, and yet the majority reported receiving no or poor support in managing it. Assessing and treating patients holistically and with empathy was strongly felt to increase diagnostic accuracy and improve medical relationships. Conclusion Patient responses indicated that timely diagnosis could be facilitated if physicians had greater knowledge of lupus/related systemic autoimmune diseases and were more amenable to listening to and believing patient reports of their symptoms. Patient priorities included physicians viewing them holistically, with more emotional support and assistance in improving quality of life, especially in relation to fatigue.
Article
Full-text available
From a 1-year survival of less than 50% before the discovery of glucocorticoids to over 90% at 10 years in most dedicated centres, the spectrum of SLE has profoundly evolved. Despite this improvement, several major challenges currently remain. The aim of this review is to analyse what are, according to us, the 10 most important contemporary challenges in the management of SLE. Among those are the need to treat to target to favour disease remission (or low disease activity), limit the use of glucocorticoids, derive more comprehensive tools for the evaluation of disease activity, develop more effective drugs (yielding successful trials), dissect the heterogeneity of the disease both at the molecular and genetic levels, identify relevant biomarkers for individualised treatment, manage fertility and pregnancy, tackle comorbidities such as cardiovascular risk, the prevention of infections and osteoporosis, improve the network of care (from the patients’ perspective), and favour a holistic approach (integrating fatigue, adherence to treatment, physical activity). Altogether, these 10 contemporary challenges in SLE may be considered as a roadmap for those involved in the daily care of patients with SLE, as well as for researchers who may wish to contribute to an improved management of this rare and complex disease.
Article
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Objectives: Systemic lupus erythematosus (SLE) is associated with high levels of workplace disability and unemployment. The objective of this study was to understand the reasons for this and to describe the barriers and facilitators of employment identified by people with SLE to develop appropriate solutions. Unemployment, as well as unsuitable work, has adverse health outcomes. Methods: Adults with SLE completed a UK-specific online survey, through the LUPUS UK website, designed to find out more about the difficulties and successes that people with SLE have in maintaining employment. The survey was predominantly qualitative, to understand participants' employment experiences to generate possible solutions. Results: Three hundred and ninety-three people gave detailed responses to the survey within eight weeks. Every respondent reported a detrimental effect of SLE on their ability to work: 40.45% had left employment because of it. The themes of concern to respondents were unambiguous: (i) the difficulties of working (and career damage) with SLE, (ii) fear and anxiety overshadowing work/family life, (iii) the greater potential to remain in some employment or stay in full employment when modifications of work pattern and support from management and colleagues were available. SLE-related fatigue, its invisibility and fluctuating nature were felt to be the main barriers to maintaining employment. Numerous respondents could work only part-time and anxiety was high regarding their future ability to continue working. Many had taken substantial pay reductions and refused offered promotions to preserve their health. Distress due to loss of work and the benefits it brings were reported by every respondent who had left work. Conclusion: SLE presents specific difficulties for maintaining employment - fatigue, fluctuation and invisibility - not addressed by current anti-discrimination legislation or currently available 'reasonable adjustments'. This study demonstrates that (i) employment is an important area of concern for people with SLE, (ii) SLE has significant detrimental effects on individuals' ability to participate and progress in employment, (iii) legislators and employers need information about SLE as invisibility and fluctuation cause hidden problems, and (iv) more data is needed to inform workplace adjustments if individual distress and societal loss of skills are to be addressed.
Article
Introduction: Patients with systemic lupus erythematosus (SLE) have a better survival than decades ago; nevertheless, they still experience a low health-related (HR) quality of life (QoL). Areas covered: After defining QoL and HRQoL we review the need to assess it, its elements, how to measure it, its predictors and its impact and potential interventions to improve it. Expert commentary: Physicians assessments of disease activity and damage do not capture the patients’ perspective of their health, and these differences could lead to nonadherence to therapy. Based on that, a comprehensive evaluation of SLE should include the assessment of HRQoL or the sum of the physical, psychological and social perception of wellbeing, influenced by the patient’s illness. The most consistent predictors of low HRQoL are older age, poverty, lower educational level, behavioral issues, some clinical manifestations and comorbidities. HRQoL impacts negatively on dealing with stress, intimal relationship, home and job-related activities and treatment adherence. At the present, there are no successful specific therapeutic strategies aimed at improving it.