Article

Medical constructions of long-term exhaustion, past and present

Abstract

Culture and history affect the ways in which medical knowledge is shaped, sustained and changed. The less knowledge we have, the larger the space for the cultural imprint becomes. Based on these assumptions, we ask: how have medical constructions of long-term exhaustion changed over time, and how are changing constructions related to societal change? To discuss these questions we conducted a comparative study of medical texts from two historical periods: 1860-1930 and 1970-2013. Our data are limited to two diagnoses: neurasthenia and encephalomyelitis. After comparing the two periods by identifying diverging and converging aspects, we interpreted observed continuities and interruptions in relation to historical developments. We found that in the medical literature, long-term exhaustion became transformed from a somatic ailment bred by modern civilisation to a self-inflicted psychiatric ailment. At the same time, it changed from being a male-connoted high-status condition to a female-connoted low-status condition. We interpret these changes as contingent upon culturally available modes of interpretations. Medical knowledge thereby becomes infused with cultural norms and values which give them a distinct cultural bias. The historical controversies surrounding this medically contested condition neatly display the socially contingent factors that govern the social construction of medical knowledge. © 2015 The Authors. Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for SHIL.
Medical constructions of long-term exhaustion, past and
present
Olaug S. Lian
1
and Hilde Bondevik
2
1
Department of Community Medicine, University of Tromsø - The Arctic University of
Norway, Norway
2
Institute of Health and Society, University of Oslo, Norway
Abstract Culture and history affect the ways in which medical knowledge is shaped,
sustained and changed. The less knowledge we have, the larger the space for the
cultural imprint becomes. Based on these assumptions, we ask: how have medical
constructions of long-term exhaustion changed over time, and how are changing
constructions related to societal change? To discuss these questions we conducted
a comparative study of medical texts from two historical periods: 18601930 and
19702013. Our data are limited to two diagnoses: neurasthenia and
encephalomyelitis. After comparing the two periods by identifying diverging and
converging aspects, we interpreted observed continuities and interruptions in
relation to historical developments. We found that in the medical literature, long-
term exhaustion became transformed from a somatic ailment bred by modern
civilisation to a self-inicted psychiatric ailment. At the same time, it changed
from being a male-connoted high-status condition to a female-connoted low-status
condition. We interpret these changes as contingent upon culturally available
modes of interpretations. Medical knowledge thereby becomes infused with
cultural norms and values which give them a distinct cultural bias. The historical
controversies surrounding this medically contested condition neatly display the
socially contingent factors that govern the social construction of medical
knowledge.
Keywords: chronic fatigue syndrome, chronic illness, long-term illness, medical knowledge,
sociology of scientic knowledge
Introduction
It is impossible to understand how health and illness is constructed without discussing when
and where and by whom it is constructed. This historical and cultural contingency also applies
to the medical knowledge of diseases (Brown 1995, Freidson 1970, Jutel 2011, Rosenberg and
Golden 1992, Wright and Treacher 1982). To increase our understanding of how culture and
history inuence the ways in which medical knowledge is shaped, sustained and changed, we
need to study how human problems are medically named and explained in relation to a spe-
cic sociocultural context.
In this article we employ a historical sociological approach (Abrams 1982) to study the
social transition of medical knowledge related to long-term exhaustion (a severe form of
©2015 The Authors. Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for SHIL.
This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License,
which permits use and distribution in any medium, provided the original work is pr operly cited, the use is non-commercial and
no modications or adaptat ions are made.
Sociology of Health & Illness Vol. xx No. xx 2015 ISSN 0141-9889, pp. 116
doi: 10.1111/1467-9566.12249
tiredness). Our aim is to uncover the ways in which cultural norms and values become
absorbed into what is presented as medical knowledge about this condition, and we ask: how
is medically unexplained long-term exhaustion understood in contemporary Western medicine,
compared to earlier times, and how are changing constructions related to cultural and societal
conditions? We approach these questions via a comparison of historical and contemporary
medical texts discussing two diagnoses: neurasthenia, as used in the period from 1860 to
1930, and myalgic encephalomyelitis (ME), as used from 1970 to present day. Our purpose is
not to say anything about what these bodily afictions are but how they have been named,
dened, explained and responded to by medicine in two historical periods. Apart from the
introductory sections, our presentation has three parts. Firstly, we present a thematic descrip-
tion of each time period separately. Secondly, we present a comparative analysis of the two
periods. Thirdly, we discuss our main ndings in relation to some of their theoretical and
political implications.
We chose long-term exhaustion as a case for our study because it is a chronic and medically
contested condition that is difcult to identify, localise, explain and cure with the aid of mod-
ern biomedical knowledge and technology, and therefore leaves ample room for cultural inu-
ence. The modern biomedical cosmology is a way of knowing based on collecting, delimiting
and classifying symptoms (signs of disease) and by locating them in a place in the body (if
possible). Technologically generated ndings play an important role in this process. When
ndings are missing and nothing can be seenin the body, symptoms are often interpreted as
manifestations of the mind(Nettleton et al. 2004: 63). These conditions score low in the
social hierarchy of diseases(Canguilhem 1989: 39, Album and Westin 2008), and their real-
ity is often questioned: less physical, less real(Jutel 2011: 13). Long-term exhaustion is a
typical example of a somatic symptom that lacks observable biomarkers to verify organic dis-
ease. The condition has been disputed ever since it became medicalised in the 19
th
century
(Aronowitz 1998). Whether the exhaustion is psychogenic (caused by the mind) or somatic
(caused by the physical body), or a blend of both, is now a question heavily debated not only
in medical journals but also in virtual communities on the Internet (Lian and Nettleton 2014),
in the public media (de Wolfe 2009) and in consultation rooms (Banks and Prior 2001). An
implicit, yet fundamental theme in this debate is to what degree people themselves are to be
held responsible for their illnesses.
Our analysis is founded on the assumption that medical knowledge is socially constructed
by human beings and therefore infused with cultural norms and values (Canguilhem 1989, Fre-
idson 1970). This implies that we perceive medical knowledge as socially conditioned, and
contingent upon (but not reducible to) a specic cultural and historical context. These con-
structions may or may not have a foundation in a biological reality but in line with Freidson
(1970: 212) we perceive this question to be beside the pointbecause they always have a
foundation in a social reality, which is where our interest lies. Studying the social construction
of medical knowledge means exploring the origins of professional beliefs(Brown 1995: 37).
In line with this perspective, our aim is to explore how the broader social context impinges on
these constructions. Emphasising the cultural sensitivity of medical knowledge means accom-
modating health and illness as meaningful phenomena that transcend what they represent with
regard to underlying biological pathology.
Sociology of medical knowledge
The social construction of medical knowledge has previously been explored through a wide
range of empirical and theoretical studies. Relevant here is the work of Arksey (1994), who
©2015 The Authors
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2 Olaug S. Lian and Hilde Bondevik
examined the medical knowledge of repetitive strain injury (RSI), a disease characterised by
pain, stiffness or numbness in upper limbs. While rheumatologists explained RSI as a physical
condition caused by repetitive movements and overuse, orthopaedics argued that it was psy-
chogenic because it had no objectiveobservable signs. Arksey interpreted these incommen-
surable thought-styles(p. 462) as being related to different treatment options: as opposed to
holistically oriented rheumatologists, orthopaedics found their surgical skills to be of no use
for these patients. In a study of aetiological debates about multiple sclerosis, Nicolson and
McLaughlin (1988) found that competing theories (autoimmune and vascular theories) were
ltered by different skills and modes of interpreting research results by immunologists and
neurologists and by the unequal power balance between the specialities.
Another example is the work of Aronowitz (1998), who studied how various chronic condi-
tions became medically named and explained through social processes of negotiation. Ulcera-
tive colitis, for instance, became redened from a psychosomatic to an autoimmune condition
after more effective treatment options were found. Lyme disease became constructed as a new
disease, different from its similar antecedents, because of individual characteristics of research-
ers (nationality, disciplinary background, methodological approach, interpretation of biological
evidence, and attitudes to medical research results). Finally, he described how long-term
exhaustion became named with two different diagnoses: ME and chronic fatigue syndrome
(CFS), and how this split reected an underlying issue of patients seeking legitimacy for hav-
ing an actually existing somatic disease. This is in line with the work of Shorter (1992), who
argues that neurasthenia was a fashionable disease in the 19
th
century because it was dened
as an organic disease. Its popularity disappeared, however, when psychiatry parted from neu-
rology and dened neurasthenia as a psychiatric disease.
Medical knowledge is also inuenced by societal changes in employment, education and
family structures, and by historically contingent notions of women (Annandale 2009, Bordo
1992, Moscucci 1990, Moss and Dyck 2002). Based on a discussion of three typically
female diagnoses at different times (hysteria, agoraphobia and anorexia), Bordo (1992: 5)
describes the female body as a place where the politics of gender are inscribed with special
clarity.
The use of medical knowledge in clinical encounters has also been explored. While observ-
ing meetings in a cardiology outpatient clinic, Hughes and Grifths (1996) found that,
although clinical decisions were presented as purely technical judgements devoid of normative
content, they were often affected by the patients social status (class, gender and ethnicity),
and perceptions of individual deservingness. These considerations were often hidden in
accounts for actions in terms of medical benet. In other words, there is a space for doctors
to act according to their perceptions of deservingness, while accounting for their actions in
terms of medical benet(p. 193). Similarly, Berg (1992: 158) showed how biomedical knowl-
edge and information from clinical investigations were (re)constructed after being blended with
social considerations like rarely visits physicianand intelligent patient.
Study design
To explore the relation between medical knowledge and the societal context in which it
occurs, we have conducted a qualitative case study (QCS) with a comparative design. Our
methodology is informed by Robert E. Stakes (2005) interpretative and constructivist
approach to the QCS. Although our main aim is to gain detailed, in-depth information about
two unique cases (medical constructions of long-term exhaustion in two historical periods),
this methodology enables us to learn from the case abut some class of things(Stake 2005:
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Medical constructions of long-term exhaustion 3
447). From our cases, we learned something about the social construction of medical knowl-
edge more generally. Because we assume that historical change is best seen as a chain of dis-
ruptions (a Foucauldian perspective), as opposed to a linear development with an underlying
continuity, our empirical data consists of medical texts discussing long-term exhaustion from
two historical periods 40 years apart. All work related to our study was conducted by the
authors of this article.
Data collection
Our data consist of a purposive selected sample of medical books and journal articles discuss-
ing neurasthenia (in the period between 1860 and 1930) and ME (in the period between 1970
and 2013). We chose neurasthenia because it was the rst precise medical diagnosis for
long-term exhaustion, and ME because it is currently preferred by patients. The ME diagnosis
is used interchangeably with CFS, and our ndings would probably have been similar had
we focused on CFS. Neurasthenia was used as a diagnosis mainly between 1860 and 1930,
and contemporary understandings of ME dates back to the 1970s hence the chosen time
periods.
In the rst stage of our data collection we identied available medical literature using
scholar.google.com. Our search terms were neurasthenia(published between 1860 and 1930)
and myalgic encephalomyelitis(published between 1970 and 2013), combined with (a)etio-
log*(truncated search). Initially, the two cases consisted of about 11 000 and 6 000 hits,
respectively (including many duplicates). Based on a set of pre-dened criteria (Table 1) we
then selected about 50 texts for each of the two diagnoses for a more thorough qualitative in-
depth analysis. Both authors suggested relevant texts before an ultimate decision was agreed
on.
Our selection of texts might be biased, and other selections could have given different
results. We nd the main weakness of our sample to be that we downplay national differences
and minority views. Our presentation must therefore not be understood as a true and complete
picture, but as our interpretation of some interesting systematic patterns.
Data analysis
In the rst stage of our analysis we conducted an inductive qualitative thematic analysis of
each of the two cases. This analysis involved searching for, identifying, analysing and report-
ing patterns (themes) that stretched across the data material (Braun and Clarke 2006). We lim-
ited our nal analysis to three themes, formulated as questions: how are diagnostic criteria
described; which casual factors are emphasised in aetiological explanations; and how is the
typical patient described. After reading the selected texts, we identied and grouped extracts
from all texts containing information related to our three themes (for each case separately).
We then compared the two cases by identifying patterns of divergence and convergence.
Finally, we searched for possible explanations of change and stability by interpreting observed
Table 1 Selection criteria
Original (not secondary) texts from Anglo-American sourcesTexts discussing aetiological theories
Internationally cited texts
Clinically inuential texts
Texts written by authors who became decisive in setting the scene of their time, for neurasthenia:
Beard and Mitchell in the US and Ballet, Freud and Kraepelin in Europe, for ME: Straus in the US
and McEvedy, Beard and Wessely in Europe
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4 Olaug S. Lian and Hilde Bondevik
continuities and interruptions against the backdrop of cultural and historical developments.
During this process we formulated and reformulated our hypotheses several times through an
exploratory and case-led approach, and we rechecked our reading and our interpretations sev-
eral times. Through this grounded theory strategy (Charmaz 2014, Glaser and Strauss 1967)
we constructed theories from the data itself. To maintain rigour we interpreted the data rst
individually and then both of us together.
Long-term exhaustion in the age of nervousness (18601930)
In the second part of the 19
th
century, long-term exhaustion became medicalised and redened
from a troublesome situation to a medical diagnosis: neurasthenia. For a period of 50 years
(18801930), this was one of the most commonly used diagnoses in Western countries
(Shorter 1992).
Neurasthenia: an overview
By far the most inuential writings about neurasthenia came from the American neurologist
George Beard (18391883). Beard (1881: 56) described neurasthenia as an organic lack of
nerve-forceexpressed through severe exhaustion, accompanied by symptoms such as head-
ache, insomnia, fever sensations, sensitisation of the sensory organs, weak limbs, emotional
instability and anxiety (the list contained 80 symptoms). In Europe, the French neurologist and
professor Gilbert Ballet (18531916) was among the leading interpreters. Ballet (1908) con-
ceptualised the condition much in the same way as Beard.
The class and gender distribution of neurasthenia varied between countries (Gijswijt-Hofstra
and Porter 2001). In France, Germany, The Netherlands and the USA (not so much so in Brit-
ain), the distribution pointed to upper-class men. In Germany in the 1890s, von H
osslin (1893:
66) counted 604 men of a total of 828 cases. In American sources, the typical neurasthenic
was portrayed as a hard-working upper-class brain-worker who was civilized, rened, and
educated(Beard 1881: 26). Pritchard (1905: 12) also designated neurasthenia as a disease of
bright intellects, its victims are leaders and masters of men. In France, Ballet (1908: 11)
claimed that neurasthenia had an almost exclusive limitation to the cultivated classes.In
short: neurasthenia was a high-status diagnosis usually given to people from the upper classes,
including world-famous authors (Marcel Proust, Virginia Woolf and Charlotte Perkins Gil-
man), health professionals (Sigmund Freud and Florence Nightingale) and a sociologist (Max
Weber, who was diagnosed with neurasthenia due to years of overwork(Radkau 2011: 145)
by Emil Kraepelin in 1898).
Aetiology
According to Beard (1881), neurasthenia was an organic lack of nerve-force originating in
and located in the nerves, and caused by strain on the brain. Ballet (1908: 17) also
explained neurasthenia as caused by the exaggerated action of the brainthrough intellectual
work. This strain caused pathological changes in the chemical structureof the central ner-
vous system (Beard 1869: 218). This theory built on a common assumption at that time: that
disease was divisible in sthenia (excess of stimulation) and asthenia (incapacity to react to
stimulus). Compared with Beard, Ballet expressed his theories with more uncertainty: ner-
vous energy is known to us only by its manifestations; we are almost totally ignorant of its
fundamental causative conditions(Ballet 1908: 136). Both Beard and Ballet explicitly
dened neurasthenia as not a psychiatric disease: it was a physical not a mental state
(Beard 1881: 17) and a somatic disease of the nervous system, and may be contrasted to
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Medical constructions of long-term exhaustion 5
hysteria, which is a psychiatric disease(Ballet 1908: 3). This denition, including the
organic-sounding name, obstructed any notion that the condition might be imaginary (Shorter
1992).
Neurasthenia was described as a by-product of the progress of civilisation(Ballet 1908:
viii) and the rapid upheavals and changing social structures it entailed (urbanisation, industri-
alisation, capitalism, new technology for communication and transport and womens entrance
into the labour force). Modernity was contrasted with nostalgic descriptions of the past: In
bygone days the world was a peaceful place(Briggs 1921: 19). Both Beard and Ballet
claimed that modern civilisation created new ways of living that damaged peoples health. The
centre of their attention was the fast pace of urban life, sometimes symbolised by the invention
of watches: The perfection of clocks and the invention of watches have something to do with
modern nervousness, since they compel us to be on time(Beard 1881: 103). Those who fell
ill were perceived as unfortunate victims of an increasingly busy and demanding society. Both
Ballet and Beard described heredity as a predisposing factor, often seen in people with ne,
soft hair, delicate skin, nicely chiselled features, small bones... superior intellect, and with a
strong and active emotional nature(Beard 1881: 26).
To explain the damaging effects of modern civilisation on the nervous system, Beard (1881:
98) used the electrical generator as an analogy: the generator is designed for a limited amount
of energy. If the consumption exceeds this limit, the generator shuts down. In a similar way,
neurasthenia terminated an overload. As such, it was a sign of a body that was functional
rather than weak. Ballet agreed: intense or too prolonged intellectual work may give rise even
in an energetic and well-balanced man to symptoms of a neurasthenic nature(Ballet 1908:
1718).
In the beginning of the 1900s somatic explanations were gradually replaced by more psy-
chogenic ones, particularly among German physicians such as Emil Kraepelin, Alfred Hoche
and Karl Jaspers. After the German professor of psychiatry Georg Stertz (1928) explicitly
dened neurasthenia as a mental illness in a psychiatric diagnostic manual, the use of the diag-
nosis declined signicantly (Shorter 1992).
Aetiological discussions about neurasthenia were often gendered and class-related. The argu-
ments referred to both biological and social factors, often the different roles played by men
and women in society. Isaac G. Briggs (1921: 19) assumed that neurasthenia was more com-
mon in men than in women because of the more active part played by them in the struggle
for existence. According to Ballet (1908: 23), young boys seldom acquired neurasthenia
because they simply stop work when they are tired. Those affected became ill because of
the evil discipline of boarding schools(p. 25), and the living conditions there (poor hygiene,
long working days, masturbation and lack of sleep and physical activity). For girls and
women, he had other explanations:
Those who go out much, and especially women, have their whole day taken up by duties
that the vain care of their reputation impose on them: visits, dinners, balls and evening par-
ties make their life one of continual constraint, and of obligations without respite. (Ballet
1908: 27)
Robert Jones (1911), a physician in London, linked neurasthenia in girls to modern schools
(the tight timetables and the athletic games they were forced to engage in). This, he claimed,
made them mentally numb and cold from a lack of resourcefulness and self-condence. Such
states of mind and body carve the way for the worst type of nervesor neurasthenia(Jones
1911: 329). Emil Kraepelin built his gendered explanations on a mix of social and biological
factors:
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6 Olaug S. Lian and Hilde Bondevik
Of the men, naturally those who are more talented, better educated, and more active, are the
individuals who most often suffer from this disease ... Women, because their weaker pow-
ers of resistance and greater emotional irritability, are more susceptible than men. (transla-
tion from Diefendorf 1918: 147)
In biological explanations, assumed differences between the mental capacities of women and
men were important. The American neurologist Silas Weir Mitchell (18291914) described
gender differences as biologically determined to such an extent that it could not be compen-
sated for by giving women more education: nor do I think any educational change in genera-
tions of women will ever set her ... as an equal beside the man(Mitchell 1901: 37).
Neurasthenia was sometimes related to sexual energy, and referred to as sexual neurasthenia.
Freud (1985), who thought that every neurasthenia is sexual, described it as a frequent con-
sequence of an abnormal sexual life(pp. 3940). These theories were also gendered: neuras-
thenia could be caused by too much (men) or too little (women) use of libido (Freud 1985).
For men, self-abuse or sexual excessescould undermine their nerve strength (Briggs 1921:
22). For women, such disturbances were related to sexual frustration.
Class-specic and gender-specic aetiological descriptions were also visible in statistical
data. In a study of 167 cases of neurasthenia in the USA between 1885 and 1910 (Gosling
and Ray 1986), overwork was attributed to 69 per cent of middle-class men, but only to seven
per cent of middle-class women (Table 2). Given that overwork was perceived less stigmatis-
ing than substance abuse and sexual excess, middle-class men received the most sympathetic
explanations, and lower class women and men the least sympathetic ones (Gosling and Ray
1986).
Long-term exhaustion in the age of tiredness (19702013)
Today, long-term exhaustion touches on a perceived cultural characteristic of our age, epito-
mised by the book title The Age of Tiredness (Lilleaas and Widerberg 2001). The condition is
referred to by medical diagnoses such as ME, CFS, burn-out, somatic symptom disorder or
other generic names. The debate on nomenclature is central because the label is not merely a
name: whereas chronic fatigue describes a symptom, ME points to a localised somatic organic
Table 2 Percentage of indicated causes of neurasthenia 18851910, by gender and social class
(N =167)
Cause of illness
Women Men
Lower class (%) Middle-class (%) Lower class (%) Middle-class (%)
Overwork 26 7 26 69
Female trouble40 49 ––
Sexual excess 0 0 41 20
Substance abuse 14 14 29 10
Heredity 12 23 0 10
Other 12 14 9 6
Sum
*
104 107 105 115
*Percentages exceed 100 because in some cases several causes are indicated (Gosling and Ray 1986).
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Medical constructions of long-term exhaustion 7
pathology (myalgiameans muscle pains, encephalomyelitismeans brain damage). The
debate is rooted in two questions: should the condition be understood primarily as psychogenic
or somatic, and should it be understood as an illness in its own right or a symptom that occurs
in various illnesses, the same way as fever?
ME: an overview
The term ME was rst used in the 1950s in connection with epidemic outbreaks of an
unknown, polio-like assumed infectious disease in Los Angeles (1934), Iceland (1955) and
London (1955) (Anonymous 1956). In the ICD-10, the World Health Organization (WHO)
classies ME as a neurological condition of the brain (code G93.3) (WHO 2010).
ME is dened as long-term debilitating physical exhaustion that cannot be directly associ-
ated with a well-dened illness. Post-exertional malaise that does not disappear after resting is
a key component (Morris et al. 2013), accompanied by symptoms such as malaise, headaches,
bowel problems, sleep disturbances, difculties with concentration and muscle pain (National
Institute for Health and Care Excellence [NICE] 2013). An international expert group denes
ME as a profound dysregulation of the central nervous system that results in an impaired abil-
ity to produce sufcient energy, accompanied by neurological, immunological, endocrinologi-
cal, metabolic and cognitive symptoms (Carruthers et al. 2011). Diagnosis is primarily based
on symptom descriptions and case histories. The absence of technologically generated ndings,
medical explanations and curative treatments makes ME a controversial diagnosis with low
status and low legitimacy in modern medicine (Aronowitz 1998).
ME is a rare illness: using strict diagnostic criteria, the estimated prevalence is 12 per thou-
sand (Fluge et al. 2011). The proportion of women suffering from this illness is thought to be
somewhere between 70 and 85 per cent (Capelli et al. 2010). The typical patient is often por-
trayed with a female touchand stereotyped as a well-educated and previously successful
middle-class woman with an ambitious and perfectionist personality (Hart and Grace 2000).
As far as we know, there are no available statistics that support these views. In an epidemio-
logical study about CFS, the researchers found no empirical support for the social class ste-
reotype of higher social status among individuals with CFS(Jason et al. 1999: 2136).
Aetiology
The aetiology of ME is unknown but possible aetiologies include neurological, endocrine,
immunological, genetic, psychogenic and infectious factors (NICE 2013). The main aetiologi-
cal divide goes between somatic and psychogenic explanations.
In the somatic model, a dominant theory is that ME is an autoimmune disease that involves
alterations in immunological functions (concurrent pathological ndings in these patients indi-
cate a persistent immunological response). Viral and bacterial infections are assumed to be
important triggering and maintaining factors (Morris et al. 2013). A recent review article sup-
ports the neuro-immune explanation of ME (Morris et al. 2013). One of the studies in this
review (a Norwegian randomised controlled trial that received international attention in 2011)
showed that ME patients beneted from being treated with rituximab, a drug used for treating
leukaemia and several autoimmune diseases (Fluge et al. 2011). An international consensus
panel also concludes that recent studies (in addition to clinical experience) strongly point to
widespread inammation and multisystem neuropathology(Carruthers et al. 2011: 327).
Despite these research results, the dominating explanation of ME is currently based on a
psychogenic model in which psychological casual factors are foregrounded. This understanding
of ME appeared after two physicians in 1970 explained the outbreak of the polio-like disease
in London in 1955 as a characteristic case of mass hysteria that occurs in populations of seg-
regated females in girlsschools, convents, and among female factory hands(McEvedy and
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8 Olaug S. Lian and Hilde Bondevik
Beard 1970: 9). Their core argument rested on the high proportion of women affected. In a
much debated article from 1988 the American physician Stephen E. Straus and his colleagues
added age and ethnicity to the list of risk factors, and dened educated adult white women
with unachievable ambitionand poor coping skillsas being particularly susceptible (Straus
et al. 1988: 791). Later, epidemic hysteriabecame changed to culturally induced, with clear
hints that to an imaginary status (its very existence is questioned): there is no specic disease
and, therefore, no specic treatment(Mouterde 2001: 562).
Today, the theory of sustained arousal dominates aetiological descriptions. According to
this theory, ME is the result of a long-lasting stress response caused by somatisation of
stress. Bodily responses to stress are often functional, but they can become harmful by an
inability to cope with stress: The arousal response is gradually turned off when successful
(coping). If not, the arousal may be sustained(Wyller et al. 2009: 2). This assumption
rests on complex non-veried hypotheses that builds on a simple monocausal explanatory
model in which mental factors are ascribed a causal effect (although it all happens in the
physical body). The theory of causation is deducted from various studies of statistical
associations, such as an experiment showing that when ME patients are exposed to a small
amount of strain, such as hypothermia or an upright position, their sympathetic nervous
system (the part of our autonomic nervous system that is beyond our conscious control)
mobilises the bodys reactions to stress in a way that is different from that in healthy
people:
The body is therefore permanently in a state of alert; the sympathetic nervous system
behaves as though the person is eeing from a lion, when in reality they are at rest. (Wyller
2008: 12, our translation)
This stress response is described as being caused by a vicious circle that involves both precipi-
tating factors (an infection, acute stress or long-term stress) and predisposing factors (genetic
disposition or personality). Personality characteristics and lifestyle are presumed to inuence
peoples vulnerability. Ambitious, conscientious perfectionists are seen as being particularly
susceptible (Prins, van der Meer, and Bleijenberg 2006, Wessely 1994, Wyller 2008, Wyller,
Eriksen, and Malterud 2009):
At the same time, it has been scientically substantiated that certain personality traits, such
as being conscientious and a perfectionist, represent a risk in children and young people.
This also harmonises well with clinical experience; the patients generally appear as ambi-
tious and resourceful. (Wyller 2008: 9, our translation)
Continuity and interruption
In our selected texts, certain aspects continue and others remain the same. By comparing the
two periods and linking converging and diverging aspects to societal factors, the historical and
cultural contingency of medical constructions of long-term exhaustion become visible.
The aetiological U-turn
One of the most striking historical interruptions is the transition from structural to individual
explanations. In neurasthenias heyday, medicine primarily used societal explanations, while
portraying neurasthenic patients as unfortunate victims of societal change. Today, medicine
seeks explanations in individual peoplespersonalities and coping skills, and the illness is no
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Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for SHIL
Medical constructions of long-term exhaustion 9
longer regarded as an expected and socially legitimate result of being exposed to strain. This
aetiological U-turn also involves a shift from somatic to psychogenic explanations. The
exhaustion relates to the nervous system in both periods, but the causal arrow is reversed: a
somatic illness causing mental afictions became a somatic symptom (persistent fatigue)
caused by personality traits.
Cultural availability
Neurasthenia became established as a diagnosis at a time when heritage, degeneration and
bacteriological factors were emphasised. Yet prevailing societal conditions became the main
explanatory factor. When contextualising the medical system seeing it as embedded in its
cultural surroundings this becomes understandable. The diagnosis evolved against the
backdrop of the second industrial revolution. This was a symbolic important time (the turn
of a century) with rapid societal change and growing cultural pessimism (expressed by,
among others, Ferdinand T
onnies in Gemeinschaft und Gesellschaft in 1887, and Georg
Simmel in Die Großst
adte und das Geistesleben in 1903). It was also a time of widespread
epidemics of infectious diseases such as cholera (diseases linked to poor living conditions),
and a time when new ideas emerged about a socio-political role of medicine in creating
more egalitarian societies (in Europe, most of all represented by Rudolph Virchow). Eventu-
ally, these ideas led to a new medical speciality (social medicine) with a strong emphasis
on the social determinants of health (Porter 2006). Medical constructions of neurasthenia
absorbed these surroundings.
In a similar way, the current psychogenic understanding of ME has absorbed a hallmark of
modernity in Western societies: the individualistic notion of disembedded individuals acting
on the basis of a free will. The individualistic triumph of the will(Brown and Baker 2012:
32) has substituted societal factors with individual choices (unhealthy lifestyles) in medical
explanations of diseases. The behavioural argument constitutes the core of a modern biomedi-
cal system in which individual freedom and responsibility are emphasised (Porter 2006).
Culturally available modes of medical constructions can also be explored through literary
constructions (Bondevik and Stene-Johansen 2011). In the second part of the 19
th
century
exhausted women appeared in several novels written by authors such as Flaubert, Dumas, Tol-
stoj and Gilman. In FlaubertsMadame Bovary, the main character of the novel bearing her
name was bedridden with long-term exhaustion in several periods of her short life. In her least
well periods she said nothing, heard nothing, and even seemed to be in no pain as if body
and soul both were resting from all they had suffered(Flaubert 2011: 184). She tried to com-
pensate for her ailment in various extramarital relationships and by spending money on mate-
rial goods, but her efforts were in vain. At less than 30 years old, she ended her life by taking
poison. Nevertheless, Flaubert presents this woman and her ailment in a morally neutral man-
ner without judging or condemning her in any way. Quite to the contrary, he demonstrates the
ways in which the cultural circumstances of bourgeois society (as opposed to individual free
will) determined the position of women at that time. In contemporary literature, such as in Sue
Townsends (2012) novel The Woman Who Went to Bed for a Year, this perspective is absent.
When Eva a married mother of two decides to stay in bed for one year, she is morally
condemned:
Her mother said it straight out: Look at her now!Lolling about in bed like the Queen of
Sheba ... I didnt bring her up to be a lazy cow(pp. 1012).
This switch from cultural circumstances and social recognition to individual blame and disbe-
lief is similar to the shift we see in medical constructions.
©2015 The Authors
Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for SHIL
10 Olaug S. Lian and Hilde Bondevik
Contemporary psychogenic explanations of ME are linked to cultural views of tiredness in
our culture. These norms tell us who has permission to be tired and when, where and how we
are allowed to show it. Today, tiredness is a sign of weakness that must be fought and hidden
(Widerberg 2005). In this cultural context, psychogenic explanations of long-term exhaustion
run the risk of stigmatising the sufferer.
Gendered and class-related explanations
Medical constructions of long-term exhaustion mirror cultural conceptions of gender and social
class. Cultural views of women were particularly visible in diagnostic descriptions from the
heyday of neurasthenia: while women were described as overloaded by emotional and social
pressures, men were described as being overloaded through intellectual work. This relates to
presumed gender differences at that time: women were associated with the irrational body and
men with the rational mind (Annandale 2009, Moscucci 1990). These theories were given a
scientic gloss through assumedly value-neutral evolutionistic biological models that explained
an assumed inherent constitutional weakness of women. Biological descriptions bore a class
dimension: the weak, delicate and sickly upper-class woman was portrayed differently from
the strong, dangerous and infectious lower-class woman (Annandale 2009).
Explanations of neurasthenia were founded on neurological theories that focused on nervous
energy. The reserves of this energy were assumed to be nite (Porter 2001). At that time, neu-
rology had a central position in medicine: the role of the nerve bres in connecting body and
brain gave neuroanatomy a prima facie prominence in the elucidation of maladies of mood
and behaviour(Porter 2001: 31). According to these theories, the woman was a passive
energy-building being with an especially sensitised and delicate nervous system, and because
she consumed most of her energy in the reproductive process she had to live a life of reduced
activity (Moscucci 1990). If her delicate organism became overloaded she was punished with
weakness and sickliness.
Biological portraits of the female body as more fragile and less capable than the male body
were formulated in a time when womens rights arguments were beginning to be developed
(Annandale 2009, Bordo 1992, Moscucci 1990). This challenged the doctrine of separate
spheres (men as breadwinners, women as mothers and homemakers). The emancipated woman
who took on new social roles outside her domestic life may have encouraged societies to regu-
late women in new ways. Physicians were among the most important groups inuencing gen-
der ideology in the Victorian period(Gosling and Ray 1986: 251). The role of the medical
profession in this undertaking is visible, for instance, in discussions about neurasthenia in rela-
tion to the development of girlsschools. A physician in London argued that the girlsschools
must be changed if the present mental lukewarmness of girls towards the principles of house-
keeping, the care of infants, the true instincts of motherhood, and civic duties is to be chan-
ged(Jones 1911: 329). Explaining neurasthenia as a result of societal change could serve to
support arguments against the new roles women were taking on in society.
Aetiological theories of neurasthenia were related to basic social structures at that time. Mar-
ried middle-class women could not have neurasthenia linked to working for a wage because
they did not do so. When the role of women in society changed in the 1970s and 1980s a
new theory emerged: wage-earning women have poorer coping skills than men, and ME is a
self-inicted creation of educated wage-earning women who have become too ambitious and
perfectionist. Today, the dominating aetiological description of ME is based on gender-neutral
but class-related psychological explanations. Although explicitly gendered arguments are rarely
seen in the early 1990s, probably as a result of changing norms about what is culturally legiti-
mate to say about women, the typical patient is still portrayed as a well-educated woman
unable to cope with stress and pressure which arise when she does not respect the limits of
©2015 The Authors
Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for SHIL
Medical constructions of long-term exhaustion 11
her capacity. This is the energy theory of the 1800s, dressed in modern individualist clothing
that gives it a stigmatising effect. The silhouette of the upper-class woman of the 1800s, who
failed to cope with stress and pressure in expending her energy both in and out of her home,
is visible in the background here. The female-connoted ME diagnosis therefore still carries
with it a view of women that has deep historical roots.
From heroes to losers?
The theory of overexertion has survived as a main theory, but it is adapted to a new age. Orig-
inally, it served to justify long-term exhaustion by explaining that the overload is a result of
increasing societal demands. Today, the deciding factor is the individuals ability to cope. This
change expresses an individualistic ideology that we all are responsible for preserving our own
health, and when we fail to do so by choosing unhealthy lifestyles, we are the ones to be
blamed (Brown and Baker 2012).
The aetiological U-turn has therefore changed our view of the sufferers. In the 18
th
and 19
th
century, nervous conditions were a badge of honourand a mark of superior sensibility
(Porter 2001: 32). The pale, tender, sensitive, nervous and passive neurasthenic woman resting
on a chaise longue was more than socially acceptable; she was a symbol of a sophisticated
class-conscious vulnerability that was admired and looked up to as a normative ideal, almost
the pure incarnation of all that was feminine (Bordo 1992). The neurasthenic man was also
portrayed heroically, as a cultivated leader of shining intellect. The absence of condemning
undertones in medical descriptions (also seen in Flauberts novel) expresses something of the
Zeitgeist of that time. When the admiration of the heroic disappeared, ME patients became
portrayed in moralistic ways as ambitious perfectionists without the ability to live up to their
own ambitions. From depictions of individual women making (misguided) lifestyle choices it
is a fairly short step to the conclusion that women are liable for their own downfall (Annan-
dale 2009).
Medical diagnosis has the power to remove or enforce stigma and blame. When we transfer
causal factors from society to individuals we also transfer blame and responsibility. In our cul-
ture, the ability to cope with life is an important social value. Any illness caused by a lack of
coping is interpreted as self-inicted and related to weakness: a character defect. Psychogenic
explanations may therefore have a stigmatising effect and make patients feel burdened by guilt
and shame. According to a review of 34 qualitative studies, ME patients often report that their
doctors question their moral character and throw doubt on the reality of their symptoms
(Anderson et al. 2012). Several studies also show that doctors feel negatively towards ME
patients, holding the belief that they often exaggerate the severity of their symptoms (Ander-
son et al. 2012).
Shifting blame and responsibility from society to the individual has more consequences than
stigmatisation; it can also undermine peoples rights to receive social security benets and
healthcare services, as currently seen even in the most comprehensive welfare states: the Scan-
dinavian countries (Michailakis and Schirmer 2010).
Medicines cultural bias
The comparison of the two historical periods illustrates how medical constructions of long-
term exhaustion is not merely revealed or discovered, it is also interpreted within a particular
sociocultural context. Through this interpretation, medical knowledge becomes infused with
cultural norms and values which colour medical constructions and give them a distinct cultural
bias. Medical and cultural aspects are so closely entwined that they become difcult to
©2015 The Authors
Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for SHIL
12 Olaug S. Lian and Hilde Bondevik
separate, especially in the present time because the cultural blindness that comes from culture
is something we often take for granted. Through the use of historical data, we have tried to
overcome some of this blindness.
Our main nding is that medical diagnoses for long-term exhaustion have been redened
from a somatic condition bred by modern civilisation to a self-inicted psychological condi-
tion. We also nd that when the somatic foundation was removed, long-term exhaustion chan-
ged from a male-connoted, high-status illness (neurasthenia) to a female-connoted, low-status
illness (ME). The condition changed from being constructed as a legitimate result of heroic
effort by intelligent leaders and masters of men, to being constructed in a stigmatising way,
as a result of womens insufcient abilities to cope with their lives. We explain this transfor-
mation by changes in societal structures and the changing cultural conceptions of gender and
social class. As our discussion indicates, we interpret these factors in an intersectionality per-
spective, as integrated factors that interact with and modify each other in a complex interplay
(Iyer et al. 2008).
Modern medicine and healthcare systems are increasingly challenged by bodily ailments for
which they have no cure. Medical constructions of these conditions are based on normative
judgments presented as value-neutral knowledge, free from cultural inuences. By overlooking
the historical, cultural and normative dimensions of medical knowledge, we fail to see how
medical constructions can enforce stigma and blame. By recognising and elucidating their cul-
tural imprint through empirical research we can identify, question and challenge the implicit
normative messages that increase the conicts that often arise in relation to medically unex-
plained conditions. Unveiling these messages facilitates political action, as well as theoretical
developments. Technologically invisible and medically unexplained conditions are sociologi-
cally interesting because they offer ample room for cultural inuence, and because they neatly
display the socially contingent factors that govern the social construction of medical knowl-
edge.
Address for correspondence: Olaug S. Lian, Department of Community Medicine, Faculty of
Health Sciences, University of Tromsø- The Arctic University of Norway, N-9037 Tromsø,
Norway. E-mail: olaug.lian@uit.no
Acknowledgements
The work on this article (rst author) is nanced by The Norwegian Research Council, Research Program
of Health and Care Services (grant no. 212987/H10). We would like to thank the anonymous referees for
helpful comments to this article.
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16 Olaug S. Lian and Hilde Bondevik
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National Institute for Health and Care Excellence (NICE) har nylig publisert nye retningslinjer for behandling av langvarige medisinsk uforklarte utmattelsestilstander som myalgisk encefalopati (ME) og kronisk utmattelsessyndrom (CFS). Retningslinjene innebærer en relativt stor kursendring, blant annet er den tidligere vektleggingen av fysisk trening og mentale mestringsstrategier erstattet av råd om tilstrekkelig med hvile. Som forventet ble retningslinjene umiddelbart gjenstand for debatt. Sett i lys av tidligere erfaringer har vi bare sett begynnelsen av den. Debattene om ME og tilgrensede diagnoser er – og har lenge vært – opphetede, polariserte og skyttergravspregede, og forskere opplever det som risikofylt å delta i dem. Hvorfor blir det slik, og hvordan kan vi unngå dette i den debatten som nå må komme også her til lands? Dette er spørsmål som samfunnsvitenskapelige og humanistiske fag kan gi verdifulle bidrag til. Den utfordrende debatten rundt medisinsk uforklarte fysiske plager henger blant annet sammen med at forskjellige kilder til kunnskap vektlegges ulikt i moderne biomedisin. De ulike kunnskapskildene er rangert i et hierarki: Kunnskap innhentet gjennom vitenskapelig forskning og bruk av medisinsk teknologi blir mest vektlagt. Praksisbasert klinisk kunnskap og pasientenes erfaringsbaserte kunnskap blir minst vektlagt. I forhold til utmattelsestilstandene synes dette å være en treffende beskrivelse. Manglende funn av en biologisk sykdomsmarkør kan tolkes på mange forskjellige måter. Det kan for eksempel tolkes som at sykdommen ikke har en bestemt og avgrenset biologisk markør, eller at vi hittil ikke har klart å identifisere den. Det er i alle fall ingen grunn til å tro at den medisinske kunnskapsutviklingen har nådd et fullkomment stadium. Dersom vi tolker manglende funn av biomarkører som en indikasjon på at sykdommen bør betraktes som en psykisk lidelse, eller kanskje til og med at den er ikke-eksisterende, da er vi på ville veier. Kanskje er det her den viktigste kimen til den opphetede debatten om utmattelsestilstander ligger begravet? I veien videre bør vi tilstrebe økt tillit til og anerkjennelse av de kildene til kunnskap som lett blir oversett i moderne biomedisin: legenes praksisbasert kliniske kunnskap, og den erfaringsbaserte kunnskapen som pasientene selv besitter.
... Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a highly contested condition. 1 Its symptomatic appearance and cause, the evidence base for treatments, and even its existence is subject to fierce controversy for decades now (Brown et al., 2017;Lian & Bondevik, 2015). Consequently, people who experience symptoms of (or related to) ME/CFS report run into disbelieve, stigmas, negative stereotyping and medical and financial disadvantage (Blease et al., 2017;Deale & Wessely, 2001). ...
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In healthcare settings, patient participation is increasingly adopted as a possible remedy to ill people suffering from ‘epistemic injustices’ – that is to their unfair harming as knowers. In exploring and interpreting patient participation discourses within the 2013–2018 Dutch Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) Health Council advisory process, this paper assesses the epistemological emancipatory value of this participatory practice. It reveals that in the analysed case, patient representatives predominantly offer biomedical knowledge about ME/CFS. They frame this condition as primarily somatic, and accordingly, perceive appropriate diagnostic criteria, research avenues and treatment options as quantifiable, objectifiable and explicitly non‐psychogenic. This paper argues that such a dominant biomedical patient participatory practice is ambiguous in terms of its ability to correct epistemic injustices towards ill people. Biomedicalized patient participation may enhance people's credibility and their ability to make sense of their illness, but it may also undermine their valid position within participatory practices as well as lead to (sustaining) biased and reductive ideas about who ill people are and what kind of knowledge they hold. The final section of this paper offers a brief reflection on how to navigate such biomedicalized participatory practices in order to attain more emancipatory ones.
... The social class distinction between brain fag and neurasthenia was reinforced by several influential proponents of the time (Wessely, 1994;Lian & Bondevik, 2015). The American Neurologist George Beard to whom the term 'neurasthenia' has been attributed (Beard, 1869) asserted that neurasthenia occurred 'in the civilised, refined and educated, rather than the barbarous and low born and untrained' (Beard, 1881) while in Boston, Edes indicated it was 'more likely to affect teachers, students and nurses than domestic servants or factory hands' (Edes, 1895). ...
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The relationship between mental exhaustion and somatic sensations has been described across cultures for millennia, including the contextual relationship with studying and learning. In 19th century Britain, concern regarding the impact of ‘excessive’ study (‘overstudy’) and the mental impact on ‘brainworkers’ led to the coining of the term ‘Brain Fag’ in 1850. Anxiety became heightened following the promulgation of the Education Acts from 1870 with compulsory child education. This was felt to be a public health crisis with social class distinctions. Brain fag anxiety subsequently transmitted across the British colonies while declining in Britain. Over a century later, this linguistic and colonial residue was observed in British West Africa where it was described as a culture bound syndrome.
... Another reason relates to clinical relevance: somatic symptoms with no detectable organic pathology are challenging for doctor-patient interactions because such conditions defy medical identification, medical explanation and evidence-based treatment. Conflictual debates about these conditions are expressed in medical journals (Lian and Bondevik 2015), in public media (de Wolfe 2009), on the internet (Lian and Nettleton 2015) and in consultation rooms (Banks and Prior 2001). MUPS-consultations are characterised as a war-zone (Lian and Robson 2017), and described as one of the most challenging clinical encounters in contemporary Western societies (Rief and Broadbent 2007). ...
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In territories of medical uncertainty, clinical encounters are highly contentious. To uncover maintaining mechanisms behind persistent conflicts, we explore the interactional dynamics of clinical encounters fused with medical uncertainty. Based on a thematic qualitative analysis of experiential texts from 385 people living with medically unexplained physical symptoms in Norway, UK, Ireland, USA and Canada, we explore patients’ main expectations, how these expectations are met, and how their expectations and experiences are socially constructed and structurally conditioned. Five fundamental expectations are identified: Health professionals ought to (1) acknowledge the lack of medical knowledge, and be frank, open and curious about it; (2) believe patient experiences and accept their condition as “real”; (3) avoid blaming patients for their ailment; (4) demonstrate compassion, understanding and respect; and (5) share decision-making power with patients. Our participants experience unfulfilled expectations in all five areas. Both experiences and unfulfilled expectations are influenced by structural factors transpiring from the modern Western biomedical paradigm, and from cultural norms and values of its surrounding society. Structural and cultural forces obstruct team-oriented collaboration based on congruent understandings, mutual trust and reciprocated respect. Without such contextualisation, the interactional dynamics between patients and health professionals in clinical consultations cannot be exposed.
... Such issues should be the subject of observational studies. In the literature on MUS, there is a clear gender difference [2,5,58]. It is a limitation of our study that this issue was not included in the interview guide and research questions. ...
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Background: Early adolescence is considered a critical period for the development of chronic and recurrent medi- cally unexplained symptoms (MUS), and referrals and system-initiated patient trajectories often lead to an excess of examinations and hospitalizations in the cross-section between mental and somatic specialist care for this group of patients. Dimensions of the relationship and communication between clinician and patient are shown in primary care studies to be decisive for subsequent illness pathways, often creating adverse effects, but knowledge on clinical com- munication in specialist care is still scarce. Methods: This study explores communicative challenges specific to clinical encounters between health profes- sionals and adolescent patients in specialist care, as presented through interviews and focus group data with highly experienced specialists working in adolescent and child services at a Norwegian university hospital. Results: The results are presented in a conceptual model describing the epistemological and methodological para- doxes inherent in the clinical uncertainty of MUS. Within these paradoxes, the professionals try to solve the dilemmas by being creative in their communication strategies; applying metaphors and other rhetorical devices to explain complex ideas; creating clinical prototypes as a way to explain symptoms and guide them in clinical action; relying on principles from patient-centered care involving empathy; and trying to balance expertise and humility. Conclusion: The challenges in communication arise as a result of opposing discourses on biomedicine, family, health and adolescence that create dilemmas in everyday clinical work. By moving away from a positivist and biomedical framework towards an interpretive paradigm, where culturally derived and historically situated interpretations are used to understand the social life-world of the patient, one can create a more humane health service in accordance with ideals of patient-centered care.
... The expressed cultural views on women in The woman who went to bed for a year are not very different from what we see in the nineteenthcentury novels. Though rarely made explicit in the novel, Eva's portrayal bears strong resemblance to contemporary stereotypes of fatigue as a gendered condition: exhausted welleducated women with jobs outside their homes are unable to cope with the stress and pressure they impose on themselves when they fail to respect the limits of their capacity (Lian & Bondevik, 2015). ...
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The main theme of this essay is depictions of long-term exhaustion, a severe form of tiredness, in historical and contemporary fictional literature. Tiredness and exhaustion are real both in a biological and in an experiential sense: the phenomena entail experiences of biological processes that go on in the human body. In this paper, however, it is the cultural dimension of these phenomena that interests us. Although our perceptions are individually and subjectively perceived, they are prefigured by the socio-cultural contexts in which we are situated, and therefore infused with culturally defined norms and values. These norms and values are generated through interactions between human beings, and therefore vary between time and place. Culturally and historically contingent norms about exhaustion define rules about who has permission to be exhausted, and when, where, and how we are allowed to express it (Widerberg, 2005). These perceptions are gendered: men and women seem to handle tiredness differently and the (stereotyped) masculine response – to pull yourself together and “handle it like a man” (Widerberg, 2005, p.111) – is perceived as the culturally more legitimate form in our culture, where tiredness is seen as a sign of weakness, and the normative ideals are energy, toughness, strength, and endurance (ibid). Cultural norms and values about how to think about and deal with experiences of exhaustion are expressed, created, maintained, and challenged in a complex interplay between different actors operating in social fields, not only in day-to-day interactions between human beings, but also in powerful fields such as the medical system and the field of fiction and the popular press. One way to explore cultural norms surrounding expressions of exhaustion, then, is to study literary texts. Through creative and artistic expressions, literary texts depict, convey and create culturally and historically contingent interpretations of social realities. Sometimes, these expressions also represent wide-ranging cultural critiques of these interpreted realities (Schaffner, 2016). Literary texts are mediators between the individual subject and the larger group (Thompson, 2015), and studying these texts in a sociocultural context might help us unveil the intricate interplay between social structures and individual actors (Antoft, Hviid, Jacobsen & Knudsen, 2010). Building on this assumption, commonly found in the sociology of literature, combined with a historical sociological approach (Abrams, 1982), we explore culturally and historically contingent norms and values related to long-term exhaustion. We approach this task through an analysis of three literary texts, all written by prominent authors and regarded as key literary works of their time: Gustav Flaubert's Emma Bovary (1857), Charlotte Perkins Gilman’s The Yellow Wallpaper (1892), and Sue Townsend's The woman who went to bed for a year (2012). Our main questions are these: how is severe long-term exhaustion portrayed in modern contemporary literary texts compared to nineteenth-century texts? In what ways are these texts related to medical constructions of illness, disease, and diagnosis involving these experiences, and the Zeitgeist of their time? And how can literary representations of this ailment serve to enlighten contemporary debates about this medically contested condition? We limit our discussion to three main themes that seem to be particularly relevant for contemporary debates about long-term exhaustion in Western societies: medicalization, normative judgments, and gender issues. By synthesizing key findings, a core pattern emerges: long-term exhaustion changed from being portrayed as a character trait associated with upper-class women (partly a natural feature and partly a result of their socioeconomic position), to an illness associated with well-educated women working for wages who are unable to cope with the stress and pressure they impose on themselves when they fail to respect the limits of their capacity. Changes identified through the analysis of the three literary texts are very similar to changes identified in medical constructions of long-term medically-unexplained exhaustion. Today, the epidemiology of this condition has been described as reflecting “an excessive risk for educated adult white women”, sometimes with “unachievable ambition” and “poor coping skills” (Straus et al., 1988, p.791). The typical patient is often portrayed with a ‘female touch’ and stereotyped as a well-educated and previously successful middle-class woman with an ambitious and perfectionist personality (Hart & Grace, 2000). This is the energy theory of the 1800s, dressed in modern individualist clothing. Hence, the stigmatizing view of women as particularly receptive to this condition has prevailed but with a major difference: while nineteenth-century women were seen as determined, partly by nature and partly by culture, to be particularly vulnerable, lack of coping is the key element in Townsend’s novel. This change reflects the modern neoliberal individualistic perspective on health and illness: through our individual lifestyle choices we our solely responsible for preserving our health and preventing illness. The condition has become more medicalized, but instead of removing blame, as medicalization often does, the ailment is now portrayed in a harmfully judgmental manner.
... For det andre er individualiseringstesen relevant i denne sammenhengen fordi psykiske helseplager kanskje i større grad enn tidligere er forstått som individualiserte. Mens tilstander som neurasteni, melankoli, tristesse og nervøsitet for hundre år siden ble oppfattet som en konsekvens av kulturen (mennesket i sivilisasjonen), hevdes det at lignende tilstander i dag i større grad tolkes et svakhetstrekk hos individet (Lian og Bondevik 2015: 928-9, Johannisson 2010. ...
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In recent decades, there has been an increase in self-reported internalising mental health problems, such as depression and anxiety, among young people in many Western countries, including Norway. The aim of this study has been to increase knowledge about the prevalence and the reasons behind the increase in self-reported mental health problems among adolescents in Oslo, and how youths experience mental health problems. Analytically foregrounding gender, we have explored the relationship between mental health problems and pressure related to school, body image and social media use, and how demands in these different areas affect the lives of adolescent girls and boys. We have also studied how adolescents interpret questions about mental health problems asked in large surveys, and to what extent they experience that these questions address problematic issues for the youths who are affected. The report draws on mixed methods. Firstly, it is based on six focus group interviews with 29 boys and girls in tenth form, approximately 15 years old, in two different environments in Oslo. Additionally, it is based on a large survey, Ung i Oslo 2015, where questions about stress related to school, body image and social media are included. The study shows that adolescents understand symptoms of mental health problems as stress-related. Moreover, the adolescents understand the questions about mental health problems that are asked in the large surveys mainly as deeply problematic for those that are affected. They interpret most of the questions to be related to mental issues, although a question about having trouble sleeping is slightly more ambiguous, as the adolescents also relate this to staying up because of school work or social media. Primarily, the adolescents understand the questions to relate to the daily hassles and nonstop pressure from school and other arenas where they need to perform. Many also talk about a strong, but vague sense of worry and unease about the future, related to their further education and career. Both boys and girls understand stress as something that affects the body, and girls in particular talk about how stress may be painfully and intensely felt in the body, as well as affecting their thoughts and emotions. Secondly, the study demonstrates that the adolescents primarily understand the stress to originate in school. In the interviews, both girls and boys describe school-related stress as the strongest, and the quantitative analyses show that there is a close relationship between mental health problems and experienced school stress. Many girls in particular experience school- related stress. There are also many girls who experience stress related to body image, although this is more ambiguous than school pressure. Whereas the adolescents interpret school pressure as unequivocally negative, activities where they experience body pressure, such as sports and use of social media, are more mixed, as they incorporate both stress and negative emotions as well as being a source of relaxation, community and joy.
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