The International Journal of Psychosocial Rehabilitation

The Recognition Of Fatigue
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.
 Candidate Psychology

Bodil Jensen, BA

Rikke Mørup
 Candidate Psychology.

Marie Høgh Thøgersen
Candidate Psychology

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

Author responsible for correspondence:
Peter Elsass
Institute for Psychology
Landemaerket 9
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, Modern society.

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 recognition.

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, 2004: 280).

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
“One 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 cosiness…
    Pontoppidan 1886. 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 Scandinavia.

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 stress.

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:
“In 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
The Material
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.

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 group.

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 subject
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
“Very 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
“I 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.
“Whether 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, p.16)

The opponent
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.
“The 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, p.8)

“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)

The helper
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 psychological causes.

Meeting people like yourself, an understanding spouse, and a professional who listens and gives an explanation that can be understood
“I 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
“Fortunately, 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
“The 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, p.12)

The patients are often losers in this struggle and express a loss of hope and dignity.

Uncertain future, hopelessness and anger
“I 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 and opponents.

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 rejected.

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.


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