The Recognition Of
A qualitative study of life-stories from rehabilitation clients
Centre for Humanistic Health Research, Institute of
Psychology, University of Copenhagen
Department of Social Medicine, Aalborg Hospital
Peter Elsass, D.Ms.
Bodil Jensen, BA
Marie Høgh Thøgersen
Elsass P., Jensen B., Morup R., Thogersen M.H. (2007).
The Recognition Of Fatigue: A qualitative study of
life-stories from rehabilitation clients. International Journal of Psychosocial
Rehabilitation. 11 (2), 75-87
responsible for correspondence:
Institute for Psychology
1119 Copenhagen K
This article gives a qualitative analysis of symptoms of fatigue in a
historical and contemporary perspective. After an historical review,
starting with the concept of asthenia in 1869 to the current ‘new age
diseases’, these various metaphors are explored through contemporary
patients’ verbalisations of their illness.
The written life stories of 136 rehabilitation patients are divided
into sub-groups according to whether they convey a) an exclusively
specific and limited picture of complaints, b) medically unspecific and
vague complaints of fatigue, and c) exclusively mental complaints.
Through a qualitative analysis, all meaning units in the texts have
been identified and categorized.
The results show that especially in the group of unspecific and vague
complaints, the patient is marked by dissatisfaction. The cause of this
is attributed to professionals who do not understand, do not listen,
and do not recognise the patient’s situation. Many patients write that
it has been a help for them to receive a somatic medical diagnosis and
hence be relieved of psychological causes.
However, in none of the life stories does one find any of the cultural
metaphors identified in the historical introduction. A critical
appraisal of modern society with its increased flow of information,
splitting of the family pattern, exposed gender roles, etc.,
seems thus to exist only among the professionals.
Keywords: Chronic fatigue syndrome, Illness belief, Life-stories,
Patients with fatigue not fully explained by a medical condition have
been the subject of years’ of controversy (e.g. Shorter 1992, 2004).
Within humanistic health research, there is a concern with
understanding such illnesses that are difficult to categorise in terms
of them being cultural constructions (Garro, 1994). The term ‘new age
diseases’ is an example of disease being described as a construction of
the ‘new’, late-modern society with its emphasis on excessive demands
on personal integrity, unmanageable work-load, and physiological
contamination (Clarke & James, 2003; Arnetz, 1996).
The purpose of this article is firstly to analyse how these
descriptions of so-called ‘new age diseases’ come into existence, and
secondly to identify essential verbalisations in the rehabilitation
patients with medically unexplained complaints. Thirdly, the article
investigates whether the rhetoric of ‘new age diseases’ affects the
patients’ illness perceptions.
Considerable research has been done into various aspects of the
experience of unexplained diseases (Clements et al. 1997; Bury, 1991;
Corbin & Strauss, 1988; Conrad, 1987; Strauss, 1975), but few have
focused on the patients’ biographies (Bury, 1982) or life stories
(Frank, 1993; Williams, 1994). This study is based on life stories
written by rehabilitation patients presenting medically unexplained
complaints of fatigue. The method is one of qualitative analysis
focusing on how fatigue is cast in the patients’ struggle for
1. The History of Fatigue
Causes of fatigue
In 1733, Cheyne recorded certain conditions of fatigue as diseases and
characterised the symptoms as ‘lowness in spirits’, ‘heaviness and
dislike to action’, ‘impatience’, and ‘abnormal delicacy and
sensibility of the nervous system’ (Birket-Smith, 1960). Already in the
first half of the 19th century, the pathogenic basis for ‘weak nerves’
was ascribed to living in large, over-populated cities and to
psychological traumas, overtaxing, and addiction to medicine. But
although there were periods in the 19th century when it was claimed
that one could demonstrate an anatomical, physiological cause – such as
‘spinal irritation’ (Hirsch, 1843, quoted in Birket-Smith 1960: 14),
most people noted a lack of anatomical substrate. The condition was
characterised as functional and hardly pathological in itself.
The diagnosis of neurasthenia was introduced by Beard in 1869 and was
based on a review of 30 cases of fatigue that resulted in difficulties
of treatment. Beard counted more than 75 signs of the disease and came
to the conclusion that “each case of neurasthenia was a study of its
own” (Abbey & Garfinkel, 1991:1639). He found the main reason to be
the restructuring of society and ascribed as the reason for it the
changed working patterns that industrialisation had introduced along
with the rapid exchange of information that telephone and telegraphy
had brought about. “The neurasthenic produced his symptoms of fatigue
as a justification to be ill and to give up work.” (Beard, 1869, quoted
in Abbey & Garfinkel 1991; 1643).
Historians such as Shorter (1992) point out that the symptoms of
fatigue were particularly prevalent in the 1860s. Neurasthenia became
so widespread that Pontoppidan in 1886 warned against it becoming a
“storage space for a conglomeration of various conditions”. Towards the
end of the 19th century, neurasthenia dissolved as a symptomatic unit,
and in professional journals attention shifted to pathogenic
speculations regarding the conditions associated with fatigue such as
irritability, anxiety, imbalance of mood, depression, hypersensitivity
to noise, etc.
In the beginning of the 20th century, the first exclusively
psychological hypotheses began to appear. In 1903, as one of the first,
Janet gave to the expression “decreased nervous power” a thorough
psychological description which he termed “tension psychologique”.
Freud, in his earliest works, distinguished anxiety neurosis from
neurasthenia, and he gathered neurasthenia, anxiety neurosis and
hypochondria under the heading of “Aktualneurosen”, which was
distinguished from the “psychoneuroses”. He thus laid the basis for
ascribing to symptoms the symbolic significance that became the
starting point of psychoanalysis and of psycho-dynamic thinking.
Kafft-Ebing admitted neurasthenia into neuropsychiatry in 1895 and
spoke of neurasthenia as a condition of weakness, having as its basis a
lack of correlation between production and consumption of nervous
energy, thereby making a direct link between the sharp increase in the
occurrence of nervousness and the socio-economic conditions of that
time. He described almost every defining socio-economic feature of the
social developments in the 1800s as being pathogenic: international
economic competition, mass production, demographic changes from country
to city, breakdown of families with the adults being too preoccupied
with work and hardly seeing their children (quoted in Køppe,
During World War I, neurasthenia was described as one of most frequent
war neuroses. But since the survivors of the war were almost all
affected by extreme fatigue, the diagnosis of neurasthenia was rejected
on the grounds that there were no detectible somatic or psychiatric
diseases. This development was repeated and formed the background for
the introduction of the PTSD diagnosis as a reaction to the
non-specific psychological symptoms among all the returning Vietnam
soldiers (Hackings, 1995; Young, 1995).
In the 1920s, the vague popular perception of fatigue was quashed by
way of reference to a distinction between an exogenous “overtaxing”
neurasthenia and an endogenous neurasthenic condition in the sense of a
psychologically constitutional anomaly. Schneider introduced the term
“asthenic psychopathy” within the notion of psychopathy (Schneider,
1923, quoted in Birket-Smith, 1960: 81), which has to some degree been
retained today within the personality disorders under anti-social
personality (Millon & Davis, 1996).
Although there have thus, in the course of history, been many attempts
to describe cultural causes for fatigue, it is notable that there is a
constant probing of somatic causes. Birket-Smith (1960) provides an
overview of how different physical hypotheses arise as a reaction to
primitive psychologisation. Thus poor blood circulation is given as a
cause of the so-called “neuro-circulatory fatigue”. During World War I,
fatigue was re-written as heart conditions such as “irritable heart”
and “soldier’s heart”, and later on hypotheses arose concerning
abnormalities in the carbohydrate metabolism such as the “functional
hypoglychaemia” or as “relative adrenal cortex insufficiency”. Shorter
provides similar historical examples of how the professional has always
sought for physical explanations of fatigue, but that also large
proportions of the general population have been on the search for an
organic diagnosis for their fatigue in an attempt to avoid an expanding
psychologisation (Shorter 1992).
Bulletin for Danish Doctors, 1886
is probably right in describing as one of the greatest curses of modern
society the increasingly prevalent nervousness. Not only does it bear
witness to itself through the growing frequency of madness and suicide,
but overall it contributes substantially to stamp our time with its
peculiar marks. The greater haste that nowadays has entered our
existence, the unrest and hurry that mark all relations, are an
expression of an intensified cerebral activity; but the greater the
demands on the nervous system, the more easily are its powers
exhausted, and the quicker its resistance will fail. The greater the
efforts civilisation in our century has cost, and the greater the
ferocity of working towards the progress and well-being of our
generations, the more our nervous constitution has been weakened.
Herein we must surely also seek one of the reasons that we, despite all
our triumphs in the areas of science and practical inventions, are far
from having reached any golden age of health, happiness, or
satisfaction. Much more is the physiognomy of our age marked by so much
bother and biter pessimism that we are constantly tempted to wish
ourselves back to the good old days with their harmonic rest and
p 3 – p 4.
Fatigue as a disease of civilisations
To a number of 19th century intellectuals, fatigue was identified as a
symptom of modernity. The dissolution of the old working conditions,
the uncertainty connected to the ferocious development of the means of
production, and the expanding industrialisation and consumerism all
caused many to become preoccupied with the pathology of social life.
Great demands were imposed on the individual performances in modern
society, so that the individual could only respond with symptoms that
placed him in a position where lesser demands would be imposed on him.
Fatigue became an understandable refuge, and the intellectuals
conferred on it the prestige of science, not only within medicine, but
also in literature and philosophy.
Before Beard introduced neurasthenia as a diagnosis in 1864, there was
not within official American medical science any recorded study of
fatigue (U.S. Surgeon General Index, Rabinbach, 1992:20). But by the
year 1900, more than one hundred studies of “nervous exhaustion”,
“brain exhaustion”, “asthenia”, and “spinal exhaustion” had appeared.
Fatigue as a medical symptom was not only ascribed to physical
overtaxing, but also to constitutional physical and psychological
pathologies. Fatigue in mental life was inscribed by an increasing
number of doctors and physiologists within a series of social
dysfunctions such as crime, alcoholism, and sexual perversions. In the
course of the 18th century, an almost manic scientific fascination
arose with fatigue as an expression of the anxiety connected with
dissolution, fall, social disintegration, and even cosmic death
(Rabinbach, 1992: 21).
With fatigue being the cardinal symptom, the ground was prepared for
the description of a series of new pathologies. Alcohol abuse,
insufficient education, loss of social status, unemployment, crime,
dissolution of the family, meaningless jobs; they all produced a
psychological state to be distinguished from psychological pathologies.
Degeneration, decay, and the cultural decadence of the
fin-de-siècle gave rise to new sciences with new focus areas as
counterpoints; moral regeneration as a counterpoint to degeneration,
preoccupation with social equality and welfare instead of inequality
and class divergence, and not least the scientific interest in physical
and mental health instead of illness. Fatigue assumed different
expressions in France and England, respectively. With the military
defeat of 1870, France was thrown into another kind of cultural decay
with an increasing anxiety regarding decadence and dissolution. A new
science arose concerning social hygiene being based on a theoretical
and almost moral foundation with an obsessive preoccupation with
fatigue. Philippe Tissié pronounced in 1887 that the “new
generation is born tired and is a product of the decay of the century”
(Quoted in Rabinbach, 1992: 22). As a counterweight, he founded the
so-called rational gymnastics, which incidentally quickly moved up to
England however had greater luck with its industrial development and
with its transformation of the traditional agrarian society. Here
fatigue was not necessarily seen as a negative sign of the decay of
society, but rather as the natural resistance of the body against the
demands for productivity. Fatigue represented a legitimate boundary for
physiological and mental capability of the individual in a society
which had to be controlled in order not to develop into a lawless and
destructive force. Fatigue became a concept through the help of which
the industrial human being could be understood and governed. A body
without fatigue became the ideal for the industrial bourgeoisie, and
various empirical measurements for fatigue and productivity were
developed. As a result of this, social medicine arose with a declared
purpose of understanding the relationship between the social and
industrial conditions for physical and mental health. Overtime,
overtaxing, and fatigue became the new taxonomies of a different view
on work-related diseases. In 1875, the first scientific medical article
was published in the Lancet, attempting to provide some objective
distinctions and measurements regarding fatigue.
In the 19th century, work was at the centre of attention. Social
modernity, the attempt to transcend the class conflicts, as well as
social restructuring took place on the basis of a cosmology including
the possibility of rationalising the human body, ‘the human motor’. The
body was the productive power that could transform natural forms of
energy into mechanical labour and integrate the human organism into a
highly specialised and technological working process. Marx’ image of
modernity was the indefatigable transformation of human labour into
capital. Taylor’s utopia was that the body would enter into a harmonic
relation between nature and capital. This cosmology consisted in the
factory and labour being extensions of the ‘human motor’; and hence
arose the subsequent preoccupation with fatigue and exhaustion. During
that period, Schopenhauer, Nietzsche and Ribot wrote fatigue into
literature with references to modernity and its restructurings.
In 1888 Nietzsche asked, “Where does our modern world belong – to
exhaustion or ascent?” (Quoted in Rabinbach, 1992: 19). The statement
is characteristic of the situation in which civilisation found itself.
The metaphor of fatigue had become symptomatic of the extensive fear
among the middle class that society had been drained of its accumulated
energy. The industrialised society had become so fast with such a
demanding process of production and with so many social changes that
fatigue had become a necessary counter-precaution. Exhaustion became
the nemesis of the idea of overwhelming progress.
State and individual subject were mutually dependent, and the survival
of the state depended on the performance of the individual and hence on
fatigue. Fatigue became a means of the state, and if the individual
persons were to become producers and conscripts for the state, then
they were of little use if complaining about fatigue. At the same time,
the state could not abuse the individual, and in order to indicate
boundaries, the citizen would give vent to fatigue in contexts of
Today the work-centred society has gradually lost its original interest
in the ‘human motor’, and the body and fatigue have been inscribed
within new paradigms. With the restructuring of the welfare society,
the human machine has been inscribed within many more contexts than
just the place of work, and fatigue has become an issue pertaining to
much more than being burnt out, overtaxed, and stressed.
A whole series of thinkers including Giddens, Habermas and Gorz have
described as the most significant change in postmodern society the
cessation of the work-centred society. Today many people like Rabinbach
(1992: 298) note how manual labour has now assumed a more cerebral
character and has been dressed in cognitive and semiotic codes. Thereby
the body and fatigue have also assumed new forms.
We see this in Denmark as the rehabilitation clinics change form. They
are no longer primarily preoccupied with occupational re-training for
new jobs, but emphasise the mental development of new forms of working
for the unemployed.
New age diseases
Many of the descriptions stemming from a popular critique of
civilisation are close to being identical with what is today known as
stress, which is again very similar to the modern fatigue syndrome
(Clements et al. 1997; Abbey & Gardinkel,1991, Wessely et al.,
1998; Arnetz 1996). A lot of the explanations are the same in
principle, only the nervous system has been replaced with for instance
the immune system which is weak, easily affected, reduced, etc.
Today one is faced with the same diagnostic difficulties as in the case
of the homeless fatigue patients at the time of Beard. The popular
illness experiences are too vague, shifting and fluctuating for the
logical and rule-governed professional disease system. Shorter has, in
a historical review of the psychosomatic diseases, described how
patients are today in search for an organic diagnosis, and he accounts
for how certain vague symptoms such as fatigue become ingredients of
trendy diseases. Especially patients with chronic fatigue react
strongly against being given a psychiatric diagnosis, more strongly
than what is seen with patients suffering from common somatic diseases.
“Needless to say, psychiatrists are unwelcome in the subculture of
chronic fatigue” (1992: 317). These subcultures would rather have
unspecific organic diseases such as food allergies, hypoglychaemia;
so-called “diseases of pathoplasticity and environmental
hypersensitivity”. The patients extract particular elements from the
cultural pool of symptoms pertaining to trend-related illness models,
amplify them, and turn them into their own personal perception of what
is going on inside their bodies.
Many of the patients have become incapable of understanding their
fatigue in social isolation and join patients’ associations or seek
alternative treatment. Some doctors accompany them into a subculture
that has lost its faith in the dominating medical system, and instead
of addressing the popular experience, they dress up in symptoms that
they acquire from sources including media reports on the various trendy
diseases mentioned (Shorter, 1992: 323).
The YDUN case
In its general aims of 1998, the Danish clinic for pre-rehabilitation,
YDUN, stated that its purpose was “to strengthen the ability for
self-governance and increase the life competencies of the person in
rehabilitation”. The target group consisted of “persons with poor,
unstable, or no attachment to the labour market – persons who, in
addition to physical, mental, or social problems suffered from a
subsequent social labour market impairment”. Some of the rehabilitation
clients had some of the ‘new’ diseases such as fibromylgia with
associated fatigue symptoms. YDUN offered activities such as courses
and dialogue groups on ‘human development’, ‘crisis and mourning’, ‘our
defence mechanisms’, etc. Some of the staff had received
psychotherapeutic training and set up therapy groups.
The majority of the rehabilitation clients have been satisfied with the
rehabilitation stay. But there are clients who found the psychological
work to transgress their boundaries and who made contact with the media:
my opinion, it is terrible what goes on. We arrive to get some
clarification as to our future working capacities and should end up
full of self-confidence when we are finished, but what’s happening?
Some feel that it would be easier, if you weren’t around any more; some
get extra tranquilisers. Many are really scared about what the future
holds. Many feel that they have been abused beyond all limits” (Vest
Kysten. July 17 1998).
“Save the sick people any further
humiliation and measurements of control. Rather spend the money on
providing them with a tolerable existence” (Vest Kysten, July 9 1998).
“I have never had mental problems
before I entered rehabilitation” (Vest Kysten, March 18 1998).
“As course participants, we had
to sign a contract stating that we are mentally ill and intellectually
subnormal” (Vest Kysten. March 18 1998).
2. A Contemporary Analysis of Life Stories of Fatigue
In the period 1998- 2002, 628 patients completed a rehabilitation
course at a Danish rehabilitation center (YDUN Rehabilitation Center,
Department of Social Medicine, Aalborg Hospital. The clients were
referred with a broad spectrum of medical and psychiatric diagnoses.
During a three month rehabilitation course, participants were requested
to write down their life-stories as one of various course activities,
and each Monday throughout the course, time was set aside for writing
these stories. The participants were free to develop the form and
content of the stories, as they wished.
In 2003 the Social-Medical Unit at Aalborg Hospital contacted 610
participants and asked if they were willing to anonymously make their
life-stories accessible for our research project. 230 participants were
willing to do this and sent their stories.
10 stories were discarded due to missing pages and lack of basic
information, such as gender and age. To make the data comparable and
suitable for a quantitative analysis, 84 stories were discarded as
stories of less than 2000 words, as were stories containing less than
250 words under the main items of childhood or adulthood.
136 life-stories fulfilled the criteria, and were considered suitable
for the analysis. Of these 136 stories, 58 were written by men, and 78
by women. The average age was 40, and the age-range was from 21 to 61
years old. The average story was of 5022 words, the shortest being 2550
words and the longest 23,750 words.
The life-stories have been divided into groups according to whether
they convey 1. an exclusively specific and limited picture of
complaints, 2. medically unspecific and vague complaints, 3.
exclusively mental complaints. The groups with medically unspecific
complaints contain patients who state that they have been diagnosed
with the so-called new age diseases or environmental illnesses such as
multiple chemical sensitivity, fibromyalgia, chronic fatigue syndrome.
The group of 58 patients with unspecified complaints form the basis of
the qualitative analysis.
In 30 randomly chosen life-stories, units of meaning in the text have
been identified and categorized guided by our interest in 1. general
level of stress in childhood and adulthood, 2. specific work-related
stresses, 3. self perception and causal understanding of symptoms, 4.
user satisfaction and requirement of retirement for pension. A scoring
manual was developed on the basis of these data-driven categories. A
further 30 life-stories were scored with the manual, following which
the manual was corrected and completed. All 136 life-stories were then
coded by the authors RM and MHT according to the final scoring manual,
containing 105 individual categories. Disagreements between
scoring were solved at weekly meetings and discussed with the research
The quantitative analysis of the material is presented in Elsass et al.
(2006). In the qualitative analysis presented here, the meaning units
are arranged in order to qualify the patients’ struggle for recognition
by identifying opposition between the categories of patient, helpers
and opponents, respectively.
All the life-stories in the three groups were marked by the complexity
of psychological, social, and medical factors, but none of the stories
contained the rhetoric of new age diseases. In the following, the
variation within each category is shown with focus on the opposition
between the patient’s helpers and opponents.
The situation of the subject is characterised by many complaints which
are described as confusing, unclear, without cause, and which create
chaos within him. The unspecific picture of complaints can hence not be
understood within the specific disease categories like pain and
headache. The complaints are described as causing mental strain.
Confusion, chaos and meaninglessness
troubled, with lots of pain in all kinds of places. Increased
consumption of pain-relieving medicines. Mental confusion due to
anxiety regarding the future.” (Case 18, p.5)
“This illness has created chaos in my
life.” (Case 58, p.8)
“At the moment, I experience
everything around my illness as being unclear. It stresses me a lot in
my everyday life, that I have not succeeded in finding a cause of my
disease, that something new crops up all the time.” (Case 25, p.7)
“The rest of the day and evening are
not a life in my view, but survival. It is meaningless.” (Case 63, p.12)
“The last eight years have been very
much up and down, and the fact that I have not had a name put on my
disease makes me feel powerless. I cannot accept that my illness has no
name. That is the same as saying: There is nothing wrong with her!”
(Case 76, p.11)
Most people describe overtaxing as the cause of their illness and often
characterise themselves as dutiful persons who have not been able to
set limits for themselves. The recurrent theme is the story of a busy
working life and far too many stress factors that the patient has not
been able to cope with, even if there has been the wish to do so.
Worn out, never free, the body says stop, can take it no more
have been slogging and slaving, and now I am worn out.” (Case 67, p.11)
“My working day started at seven in
the morning finishing at one in night, that’s how I went on without any
days off. Then I could no longer go on, neither financially nor
mentally.” (Case 8, p.3)
“I have actually been through quite a
few things, and that has worn me out, both physically and mentally. The
flag has reached the bottom of the pole.” (Case 48, p.7)
“I have always been the nice one and
will probably continue to be so.” (Case 64, p.2)
“I got a prize for diligence in 7th
and 10th grade” (Case 64, p.2)
“This damned illness makes everything
very difficult, because I still want to do it all in my head, but my
body says, ‘No!’” (Case 90, p.12)
The patients position themselves as victims and describe themselves in
terms of ‘common sense’ psychology regarding ‘not letting themselves be
governed by others’ and ‘choosing themselves’. There are no examples of
speaking of the illness from positive angles such as it being a gain
that provides free-space from the demands of the surroundings.
Not setting limits, lacking self-confidence, thinking of satisfying
others, letting others decide.
I get better will to a large degree also depend on whether I get more
self-confidence.” (Case 47, p.10)
“I have been afraid of being
inadequate, and I spent at lot of time satisfying everybody in the
family and at work.” (Case 49, p. 2)
“Strangely enough, I never called in
sick. I was much too conscientious, and then that was probably a way of
forgetting myself and my own misery. The more I worked, the more was I
able to avoid feeling myself.” (Case 117, p.15)
“It is better to try to pretend being
happy and satisfied. Just think if someone got angry with you. That
would really hurt. I have always lived my life like that. Lately I have
become better at setting limits and taking care of myself. (Case 130,
The patient is marked by dissatisfaction. The cause is placed with the
opponent who does not understand, does not listen, and does not
recognise the patient’s situation. The dissatisfaction is expressed in
general terms and vaguely. Only a few real examples are given.
Humiliations and experiences of not being of value, running your head
against a wall of indifference, being talked down to.
local council became too harsh. Never again shall I allow it to knock
me out that hard. I have never experienced anything like it before in
my life. It almost finished me off.” (Case 39, p.10)
“Every time I have approached my
social worker, I felt like running against a wall, and that I was met
with suspicion, and also they did not feel any obligation towards me.”
(Case 156, p.8)
“I have been treated by the council
as though I were a hypochondriac who did not want to work.” Case 67,
“It’s as if you are just treated like
a number in the ‘system’”. (Case 106, p.8)
“I felt that the doors were locked
everywhere.” (Case 98, p.2)
“I have the sense that the doctor has
no idea what it is like to be a patient with an invisible complaint –
although he claimed the opposite. There is simply nobody who knows how
you feel, how you are, even though they have had a lot to do with
it” (Case 108, p.7)
It has been a help for the patients to be understood, both by
professionals, family, and friends. The helper has in some cases been
in the form of getting an organic diagnosis and be relieved of
Meeting people like yourself, an understanding spouse, and a
professional who listens and gives an explanation that can be understood
was probably quite relieved after the consultation, as I really felt he
believed in me.” [Concerning YDUN’s medical consultant] (Case 54, p.9)
“Had I not had my husband, it would
probably have been even worse for me. He has always been prepared to
help.” (Case 106, p.4)
“The others on my course are all like
me. We actually have almost the same problems or tasks to deal with.
That was really something, like an enriching peace.” (Case 110, p.8)
“It was nice that there was someone
who would sit down and explain what it was all about.” [Concerning
YDUN’s medical consultant] (Case 125, p.9)
“The work place found a sheltered
job.” (Case 70, p.8)
The weapons of the subject
The patients enter this struggle for recognition with some resources
that in most cases are tied to certain personal qualities like
self-confidence and ‘drive’.
Self-confidence, an interesting job, self-governance and autonomy
I have always had self-confidence - otherwise I would have collapsed
long ago.” (Case 39, p.11)
“I basically know that I am good
enough (…) my greatest desire is to live.” (Case 75, p.7)
“I have always been interested in my
job and have had a lot of joy out of it.” (Case 76, p. 9)
“I you want to make progress in the
world, then push ahead!” (Case 97, p.11)
“Every morning when I wake up, I say
to myself: ‘Today is going to be a good day!’ Many things have changed,
but the problems are there to be solved. ‘You aren’t better, just
because you’re in good health’.” Case 207, p.3)
The struggle for recognition
The encounter between subject and opponent may be characterised as a
struggle for recognition. The struggle is carried out in two areas:
Which name (diagnosis) is the illness supposed to have, and does it
have psychological causes?
No name for the illness, mental suffering, the invisible handicap
last eight years have been very much up and down, and the fact that I
have not had a name put on my illness makes me feel powerless. I cannot
accept that my illness has no name. That is the same as saying, ‘There
is nothing wrong with her’” (Case 76, p.11)
“It can be difficult to convince the
system that your body is worn out, when you don’t even understand it
yourself.” (Case 141, p. 13)
“I am afraid of being labelled with
something that I know I’m not, such as mentally ill. There may be
something wrong with my head, but mentally ill I’m not” (Case 168, p.5)
“There is no purpose in bringing up a
lot from your past if it is not transformed and worked through, which
takes time.” (Case 175, p.5)
“How easy life would be, if you had
lost an arm or a leg. Then the disability would be visible. A handicap
like mine is obviously just lies and bogus. (…) Do you have to be
admitted to the closed ward before the system is satisfied?” (Case 200,
The patients are often losers in this struggle and express a loss of
hope and dignity.
Uncertain future, hopelessness and anger
have difficulty coming up with any wishes for the future. (…) I still
have a fear and uncertainty about the future.” (Case 29, p.9)
“It is very easy to fall into the
trap of going to the pub every day, and a lot of times you get
frustrated about not having anything to get up to.” (Case 65, p.8)
“Realistic wishes for the future – I
don’t know… bag lady, criminal, or refugee…” (Case 67, p.2)
“I feel a hopelessness and anger
about not having got any further with my life, and that for so many
years I have accepted being ‘pissed on’!” (Case 175, p. 17)
“I cannot relate to the future at
all. What is going to happen? I probably have to admit that I am afraid
of the future.” (Case 205, p.6)
All the life-stories are marked by the complexity of psychological,
social, and medical factors that have historically characterised
patients with unspecific complaints since the 1800s. Overall, the
life-stories convey a high amount of stress in both childhood and
adulthood. The patients were marked by dissatisfaction, and the cause
was placed with the medical system that does not understand, does not
listen, and does not recognise the patient’s situation. It has been a
help for the patients to be understood, both by professionals, family,
and friends. The help has in many cases been one of being given an
organic diagnosis and hence be relieved of psychological causes.
There are a number of limitations to this paper. First, the sample
selected was small and non-random. The study took place within one
institutional setting, and although the life-stories are written for
the patients themselves, they did have the option of having them
discussed with the professionals at the centre.
With these reservations the life-stories can be viewed as a struggle
for recognition concerned with the right to achieve an organic
diagnosis and hence avoid a psychological aetiology. The meaning units
in the texts have been arranged in order to qualify the patients’
struggle for recognition by identifying opposition between the
categories of patient, helpers and opponents, respectively. Within this
organisation, one finds that the disease is given solely negative
attributes. The disease is the unconditional opponent, whereas the
professional helpers such as the doctor and the social worker are given
various positive and negative attributes and may serve as both helpers
Although the life-stories are permeated with different expressions of
strains and burdens, in no stories does one however find a critique of
post-modern society formulated in metaphors such as the increased flow
of information, the splitting of the family pattern, the exposed gender
role, as we saw it in the debates about new age diseases.
The life-stories show how patients suffering from fatigue as a
medically unexplained symptom must often work hard and search for a
long time to find a medical definition of their reality. A diagnosis
provides a legitimacy that is awarded to those who are easily
medicalised. Similar Ware (1992) found that some of the suffering
experienced by the people in her sample of about 150 with chronic
fatigue syndrome was due to ”delegitimization” or to the experience of
having one’s perception and definition of illness systematically
An important aim of the clinician is to create consistency and
coherence in the patient’s illness perception. The healing lies in
exploring under which circumstances the coherence of one person becomes
the relief of the other (Kirmayer 2000: 175). Our hypothesis is that
this may not be accomplished by paying attention to metaphors of
modernity as e.g. information overload, splitting of the family and the
self, lack of tradition and historical sense. Although this rhetoric is
on the side of humanistic health research, it is not a part of the
patient’s illness perception and may therefore create an additional
delegitimization of the patient.
Abbey, SE., Garfinkel, PE.(1991). Neurasthenia and chronic
fatigue syndrome: The role of culture in the making of a diagnosis.
American Journal of Psychiatry, 12, 1638-1646.
Arnetz, B.B. (1996). Causes of change in the health of
populations: A biopscyosocial viewpoint. Social Science & Medicine.
Birket-Smith, E. (1960). Det asteniske syndrom. En klinisk
undersøgelse vedrørende kroniske træthedstilstande.
Bury, M. (1991). The sociology of chronic illness: A review of
research and prospects. Sociology of Health & Illness, 13, 451 –
Bury, M. (1982) Chronic illness as biographical description.
Sociology of Health & Illness, 4, 167 – 182.
Clarke, J.N., James, S. (2003). The radicalized self: the impact
of the contested nature of the diagnosis of chronic fatigue syndrome.
Social Science & Medicine. 57, 1387–1395.
Clements, A., Sharpe, M., Simkin, S., Borill, J., Hawton, K.
(1997). Chronic fatigue syndrome: A qualitiative investigation of
patients’ beliefs about the illness. Journal of
Psychosomatic Research, 42; 615-624.
Conrad, P. (1987). The experience of illness: Recent and new
directions. Research in the Sociology of Health Care, 6, 1 – 31.
Corbin, J. & Strauss, A. (1988). Unending work and care. San
Francisco. DA: Jossey-Bass.
Editorial. (2004) Journal of Psychosomatic Research, 56:
Elsass, P., Jensen, B., Mørup, R., Thøgersen, M.H.
(2005). Living with unexplained somatic symptoms. A combined
qualitative and quantitative study of life-stories from rehabilitation
clients. International Journal of Psychosocial Rehabilitation. 2006.
vol 11 (1). 11 – 20.
Frank, A. (1993). The rhetoric of self-change: Illness
experience as narrative. The Sociological Quaterly, 34, 39 – 52.
Garro, L. (1994). Narrative representations of chronic
illness experience: cultural models of illness, mind, and body in
stories concerning the temporomandibular joint. Social Science &
Medicine, 6: 775-788.
Hackings, I. (1995). Rewriting the soul. Multiple personality
and the sciences of memory. Princeton University Press. Princeton, 1995.
Højgaard, M. (1998). Efterundersøglse. En
kvantitativ og kvalitativ undersøglse af tidligere revalidenders
udbytte ved deltagelse i YDUNs forrevalideringsforløb. Denmark,
Aalborg. Aalborg University.
Jensen, KB. (1995). The Social Semiotics of Mass Communication.
Kirmayer, LJ. (2000). Broken narratives. Clinical encounters and
the poetics of illness experience. I Mattingly, C., Garro, LC. (eds).
Narrative and the cultural construction of illness and healing.
Berkeley. University of California Press.
Køppe, S. (2004). Neurosens opståen og
udvikling i 1800tallet. Denmark, Copenhagen, Frydenlund.
Lauritsen, P., Kaasgaard, K., Elsass, P. (1997). Computere i
Psykiatrien: En undersøgelse af lægers og ergoterapeuters
'i tale sættelse' af computerens anvendelsesmuligheder i arbejdet
med deres patienter. In Elsass, P., Olesen, F., Henriksen, S.
Kommunikation og forståelse. Kvalitative studier af formidling og
fortolkning i sundhedssektoren. Denmark, Aarhus. Philosophia.
Millon, T., Davis, RD. (1996). An evolutionary theory of
personality disorders. in Clarkin JF. Lenzenweger MF (eds). Major
theories of personality disorders. New York. The Guildford Press.
Pontoppidan, K. (1886). Neurasthenien. Bidrag til skildringen af
vor tids nervøsitet. København. Bibliotek for Læger.
Rabinbach, A. (1992). The human motor. Energy, fatigue, and the
origins of modernity. Berkeley. University of California Press,
Shorter, E. (1992). From paralysis to fatigue. A history of
psychosomatic illness in the modern era. New York. The Free Press.
Strauss, A.L. (1975). Chronic illness and the quality of life.
St. Louis, MO: Mosby.
Young, A.(1995). The harmony of illusions. Invention of post
traumatic stress disorder. Princeton University Press. New York.
Wessely, S., Hotopf, M., Sharpe, M. (1998). Chronic fatique and
its syndromes. Oxford. Oxford University Press.
Williams, G. (1994) The genesis of chronic illness: Narrative
reconstruction. Sociology of Health & Illness, 6, 175 - 2000