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Disability as a process

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Introduction

The medical world has to give verdicts on disabilities, yet a certain number of patients display inconsistency in the connection between the severity of their organic injuries and their effects on personal and socio-professional performance. It is difficult to understand how some people with minimal somatic injuries can develop towards serious dysfunc- tion while others, much more seriously affected physically, succeed in reassuming a level of total autonomy and a good quality of life. This apparent contradiction leads to a re- examination of the widely held belief that a link of linear and proportionate causality exists between a physical injury and any resultant personal and social handicap. The explanation of this clinical reality extends from the integration of the psychological, professional and social context via a wider concept of a disability process rather than remaining focused on the single somatic deficiency. The biopsychosocial model put forward by Engel [1] seems to be the one that best accounts for the complexity of this disability process. In this chapter, we will be examining several viewpoints in connection with this problem in the context of a theoretical time and model.

Disability process

In a series of articles published in the JAMA [2] in 1963, Hirschfeld and Behan explained the concept of the accident process in order to solve the dilemma posed by the lack of pro- portion between minor somatic injuries and severe and lasting disability. The authors documented a psychological context as the cause of accidents and injuries in the majo- rity of the 300 cases of industrial workers referred to them within the framework of com- pensation claims. To them, the somatic damage was not isolated to be positioned in the field of a “before” and an “after” in relation to the traumatic event concerned. They put forward the hypothesis of an accompanying psychosocial weakness. These authors felt that the accident represented a solution to the patient’s problems, with the development towards chronicity being reinforced by the fact that, and I quote, “The use of illness as a P.-A. Fauchère

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solution to the problems of life is now reinforced by legal factors which make incapacity the cornerstone of continued financial support”. This statement of the problem remains a topic of current interest.

Following on from there, Weinstein [3] expanded the concept with the illness process leading to disability process, the symbolic blow to health being not just initiated by an accident but by an episode of illness. The model presupposes a dysphoric period (drop in self-esteem within the context of psychological difficulties) that runs parallel to a drop in job productivity. It is at that critical moment that the symbolic blow to health occurs (minor accident or episode of illness) that legitimizes the drop in job productivity for the subject himself, for those around him and for society. The disability thus becomes accept- able enough for a medical tag and, as a result, psychosocial and financial support as pro- vided for by society. Self-esteem can be restored since the disability has become legiti- mate. In fact, this concept of the disability process supports the idea that behavior with a socially accepted illness can be a response to internal and external demands that go beyond the adaptive capabilities of the subject in question. At this stage, there is not much chance of reversing the disability. The process ends in a new balance between the needs of the subject and the internal and external demands made on him. The patient’s behavior is, however, well known to clinicians with the setbacks to treatment suggested and the subject’s apparent capability to control his own symptoms.

Disease or abnormal behaviour?

Considerations over several years have seen the development of explanatory models of this particular form of behaviour by these patients in the healthcare system and in society in general. There was the idea of primary and secondary gains of the illness, based on the theory of neuroses. There was the concept of a sick role that highlights obligations but even more the benefits that a given society bestows on the fact of being ill. Mechanic and then Pilowsky [4] developed the idea of abnormal illness behaviour for a way of respon- ding that is poorly adapted to the actual state of health, in spite of having been given suf- ficient and appropriate information by healthcare professionals. Matheson [5] concep- tualized the symptom magnification syndrome for a disability behaviour model that is worked out and maintained under the influence of social factors and allows the indivi- dual to exert control over his environment and over his own mental equilibrium. All these models are of interest in terms of a global or biopsychosocial understanding of a patient and opens doors in terms of clinical psychology and treatment. However, they describe processes or behaviours and do not have any illness value as such.

In the matter of somatoform disorders, modern psychiatric nosology wanted diagnos- tic entities very close to those covering the processes of abnormal illness behaviour or symptom magnification syndrome. The best known example of this is definitely the per- sistent somatoform pain disorder, which bears the number F45.4 in the WHO internatio- nal classification of diseases. Somatoform disorder is understood to mean a clinical pic- ture of disorders of somatic appearance for which the diagnosis points out the prelimi-

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nary exclusion of a somatic complaint as well as any other psychiatric complaint that would explain them better. The disorder should again mean significant suffering, perso- nal and social dysfunction and provide, in most cases, support or exclusion from disa- greeable tasks that the subject would otherwise be unable to obtain. In fact, this second part of the diagnostic sort out factors in the relational and social dimension of these somatoform disorders. In fact, this nosological concept introduces an operational boun- dary for certain clinical situations that go beyond the medical field in the strict sense.

Seen in this way, these somatoform disorders can only frustrate the conventional biome- dical model both at treatment level as well as at their evaluation level in terms of incapa- city for work.

Psychodynamic disability factors

It would take too long here to go into the extensive conceptualization work carried out in the field of psychosomatics, in the meaning of the influence of the psyche on the deve- lopment of symptoms or genuine physical disorders. We will restrict ourselves to quoting a few salient elements that have sometimes been absorbed into current medical parlance.

According to psychoanalytical theory, neurotic disorders result from primary gains and can cause secondary gains. In the case of somatoform disorders, the primary gains have the role of reducing inner mental conflicts and tensions by producing symptoms that have the appearance of somatic disorders, making use of defense mechanisms such as repression, regression and denial. As a result, they are the basis for somatoform “neu- rosis”. The secondary gains are a consequence of illness. Patients can obtain certain bene- fits from their state to get added attention from those around them or to avoid a situa- tion or a role that they would otherwise be unable to avoid. These secondary gains can thus contribute towards maintaining the severity or chronicity of the disorder. It should be emphasized that, in psychodynamic theory, these are the result of subconscious mechanisms and are therefore not controlled by willpower.

Universities in Boston, Chicago and Paris have worked out concepts that have pro- gressively made up the coherent core of psychosomatic theory. In this connection, we can mention the giving up – given up, hopelessness – helplessness syndromes which are a pre- illness psychological state occurring after a loss in the life of an individual. The classic entities of alexithymia and pensée opératoire, which are terms for an inability to or diffi- culty in describing or being aware of emotions or mood, have been conceptualized in parallel. They would explain the propensity for certain subjects to express inner mental conflicts by means of somatic symptoms or disorders. All the work focusing on the pro- blem of narcissism should also be mentioned as this is apparently a frequent one among a certain patient category. It should be understood as a lack of self-esteem, forcing the subject to constantly prove that he is worthy of being loved. It is the functional pattern frequently encountered in destructive developments after a minor accident for some workaholics. With work addicts of this type, the triggering traumatic event takes on a dis- proportionate significance since it reveals the underlying vulnerability.

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Value of the triggering traumatic event

The disability process is most frequently based on a triggering traumatic event. This could be severe mental or physical trauma that, in the normal course of things, would go towards disability in a development seen as proportionate. However, there can be a pic- ture of post-traumatic stress disorder (PTSD) that can occasionally remain chronic and seriously disabling. The clinical presentation, however, is typical with intrusive and dis- tressing recollections (flashbacks, nightmares) of the event, the avoidance of clues related to the trauma and increased arousal (difficulty in sleeping, irritability, hypervigilance).

However, the triggering trauma is apparently most frequently of a minor nature. It is nevertheless indispensable to make inquiries into the details, the way it was experienced and the emotions that accompanied it (anger, revolt, shame, feeling of abandonment, extreme fear). Clinical experience has revealed that sometimes one is surprised by the intensity of what happened during the event that a priori was not serious. Current consensus is to award much more importance to the significance of the traumatic event for a subject than to its objective severity evaluated by a neutral observer. Sometimes, it is noted that the avoidance of the workplace as the site of an accident generates behaviour in a disabled person. The genuine causes of this behaviour are often unknown to the caregivers even though they are treatable and the prognosis is not necessarily poor since they are similar to a simple phobia. Therefore the former psychopathological terrain must be taken into account (history of abuse in childhood, personality disorders, affective disorders, etc.) that may become the melting pot for psychiatric comorbidity with is own intrinsic disability value [6].

Cognitive factors of disability

Earlier, we saw that certain types of trauma can generate avoidance behaviour that can severely impede any return to the workplace and contribute to the adoption of invalidity status. Cognitive therapy puts forward that certain psychological difficulties originate in the erroneous belief in which the individual is more upset by the view he has of matters than by their objective reality.

In the area of interest to us, it is known that a fear-avoidance belief can lead to disa- bility behavior for fear of causing pain or of injuring oneself by certain movements, with subjects setting themselves into a sort of preventive inaction. The same mechanism asserts itself when the patient sees his disorders in such a way that he is convinced that there is a major risk if he uses force or moves in such a way inadvertently. This is the case with certain lumbar trauma patients who live in constant fear of becoming paralyzed and ending up in a wheelchair. Such beliefs obviously carry a high risk of encouraging long- term disability even if certain observations reveal that they could be reversible with the relevant psychotherapy [7].

Certain convictions make up the core beliefs acquired in the course of development and more or less activated at some moment or other in life. The idealization of physical

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integrity, that is the only capital in the case of some manual laborers, can originate from a belief that “to be somebody good, I must always work harder, more and better than others”. Such subjects would obviously have great difficulty in coping with an even minor attack on their physical health.

Socio-cultural factors

Socio-cultural factors can have a decisive impact in some developments towards disabi- lity as some of the literature might appear to suggest [8]. The targeted questioning of cer- tain nosologically controversial entities such as chronic fatigue syndrome and fibromyal- gia or late whiplash syndrome can create fascinating elements for thought.

Nowadays, our medical practice is confronted by a certain number of controversial nosological entities that have emerged in a variety of contexts, to our knowledge most frequently within the framework of occupational medicine or from a claim for acknow- ledgement or compensation (Table 1). These diagnostic entities are sometimes in relati- vely current use, such as chronic fatigue syndrome and fibromyalgia. These can be asso- ciated with chronic low back pain, other instances of chronic pain without conclusive organic basis and late whiplash syndrome for disorders attributed to cervical torsion.

Other symptomatic pictures are less common such as sick building syndrome, myalgic encephalitis, myofascial pain syndrome and chronic temporomandibular disorder. Some of them take us back to controversies that have mobilized North America such as Gulf war syndrome and silicone breast implant toxicity [9].

Chronic low back pain Fibromyalgia

Late whiplash syndrome Chronic fatigue syndrome Myofascial pain syndrome

Chronic temporomandibular disorder Repetitive stress (or strain) injuries Myalgic encephalitis

Sick building syndrome Multiple chemical sensitivities Gulf war syndrome

Silicone breast implant toxicity Somatoform disorders

Table 1 – List of controversial nosological entities.

These diagnostic designations cover clinical situations that have a certain number of characteristics in common. First of all, they give the appearance of a truly organic illness with the patients most frequently rejecting any psychological problem. The etiology of these complaints is poorly known even if countless hypotheses are documented in this

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connection. The subjects concerned most frequently report a triggering factor (accident, infection). These complaints sometimes take on an epidemic nature (sick building syn- drome). The clinical picture is frequently vague and unsystematic. It involves common complaints, picking up on the everyday experience of all and sundry: tiredness, pain, sleep disorders. The symptoms appear to be under the subject’s control. There is fre- quently an enormous discrepancy between clinical presentation and the importance of the alleged disabilities. Diagnostic tools are poor. There are sometimes doubts about the reality of the symptoms and even the existence of the illness in question - something that is nevertheless not normal in the field of medicine. These complaints are, after all, always difficult to treat but remain stable in their relative mildness outside of their incapacita- ting nature. In themselves, they never call the vital prognosis into play (Table 2).

Table 2 – Common characteristics of these controversial nosological entities.

Appearance of an organic illness without any clear indication of a specific injury Vague symptoms relating to the everyday experience of all and sundry

Symptoms that appear to be under the control of the subject

Discordance between the clinical organic picture and the importance of the disabilities Objection to any psychological problem

Difficult treatment but stability and benignity in the long term Diagnostic tools unsatisfactory

Doubts about even the existence of the illness concerned

In fact, these nosological entities diverge resolutely from the paradigm of a classic biomedical ailment with its etiology, verifiable injuries and its development with or without treatment, documented in the relationship between the clinic and histopathology.

In the majority of cases, these situations are definitely positioned as a form of behaviour in keeping with a much wider context than the single somatic incident designated as the starting point. This broader view of the problem has been noticed for countless years.

In this connection, it is interesting to point out that the majority of the controversial nosological entities mentioned above are connected to unfavourable psychological fac- tors, to a high incidence of psychiatric comorbidity, even simply seen as the equivalent of mental problems. Some authors compare chronic fatigue syndrome, for example, to a form of disguised depression. Most frequently, the patients concerned, however, reject psychological problems unless they are those that they admit to as a consequence of their suffering and handicaps caused by their illness which, according to them, is organic in nature. The fact that the doctor first treating them wishes to refer them to a psychiatrist is frequently experienced as a rejection and calls into question the sincerity of the com- plaints. A psychiatric diagnosis is normally ill received by the patient himself, by those around him, society and probably also the healthcare community.

Sociologists [10, 11, 12] tell us that every culture provides for codes of conduct and defines as far as behavioural constellations that allow a departure from these. In the heal- thcare sector, any culture would define its misbehavioural patterns, that is to say socially

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acceptable symptoms that are recognized as such by the people around the subject in question, by his professional counterparts and social insurance companies. The illness patterns might be mobilized in important moments of stress, the status of being ill being perhaps one of the most economical solutions of a poorly adapted response authorized by our culture.

In the author’s opinion, the clinical palette of these diagnostic labels applicable to acceptable illness patterns makes certain presuppositions. The symptoms must be depen- dent on the appearance of organicity. The disorder must be recognized as being incapa- citating while still remaining benign and never questioning the vital prognosis. The symptoms are apparently under the subject’s control at their relational value level. The medical body has then reached its diagnostic and therapeutic limits in terms of evidence- based medicine. In this respect, some nosological entities mentioned above (Table 1) are made to measure for labeling the final outcome of a chronic disability process. They are perhaps an appropriate behavioural pattern rather than a true illness, while a minor medical or surgical event develops into a disproportionate disability both in terms of its length and its severity.

Discussion

Modern diagnostic classifications are credited with having determined a certain number of morbid entities, permitting a common language and remarkable progress in terms of evidence-based medicine. In actual fact, they list scientifically recognized illnesses, i.e.

universally accepted as being such in the majority of industrialized countries with their sets of treatment, psychosocial support and acknowledgement by the community. These are biomedical ailments in the strict sense (cancer, infection) and major psychiatric pathologies (psychoses, dementia, uni- and bipolar affective disorders).

Other diagnostic entities remain controversial to avoid being modeled on the bio- medical pattern. However, this pattern does pose the question of their reality as a dia- gnostic entity without the suffering of those who bear these diagnoses being put in ques- tion. In our case, this mainly concerns chronic low back pain, fibromyalgia, chronic fatigue syndrome and late whiplash syndrome. The major group of somatoform disor- ders can be associated with these even if their psychiatric connotation gives a diagnostic label that is far less acceptable socially. This group of illnesses has tailor-made character- istics for becoming the final outcome of a disability process and are often the final dia- gnostic label of chronicity. They could be a misbehavioural pattern, in the meaning of socially acceptable behaviour in response to excessive internal or external demands. They force the questioning of the widely-held belief that there is a line of linear and propor- tionate causality between a physical injury and the personal and social handicap that will ensue. We have already seen that, alongside the socio-cultural factors amply explained here, the elements relevant to the person himself (psychodynamic and cognitive factors), the singular impact of trauma and psychosocial terrain also constitute a melting pot for chronic disability.

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The biopsychosocial model put forward by Engel [1] is probably the one best able to integrate all the factors involved in the disability process. He suggests that the specific biological disorder of a disease does not necessarily result in its clinical manifestation. It does not explain all the aspects of the illness. It is simply a necessary but insufficient condition. The illness cannot be reduced to its biological component because it mainly manifests itself at psychosocial level. Many evidence-based arguments show that perso- nality type, lifestyle, existential problems and culture affect the way a biological distur- bance is expressed. In itself, the biomedical model remains insufficient to explain the long-term disability process.

Conclusion

Not forgetting the countless working hypotheses that explain the disability process in response to excessive internal and external demands, the limitations of a therapeutic approach are immediately apparent (medication, manipulation, surgery) in terms of classic biomedical functioning. Instead, efforts should evidently be concentrated on psy- chosocial measures in the widest sense of the term, in the knowledge that in the case of chronic low back pain, for example, the efficacy of this early holistic approach has already been demonstrated extending as far as modifications in the workplace. In terms of pre- vention, we are faced with the question of escape routes that our society must provide for those among us who are less capable at the personal, social and professional level. The label of somatic, psychosomatic or psychiatric illness is not, perhaps, the best of solu- tions.

Bibliography

1. Engel GL (1977) The need for a new medical model: a challenge for biomedical science.

Science 196: 126-36

2. Hirschfeld AH, Behan RC (1963) The accident process. JAMA 186(3): 193-9

3. Weinstein MR (1968) The concept of the disability process. Psychosomatics 19(2): 94-7 4. Pilowsky I (1995) Low back pain and illness behavior. Spine, 20 (13): 1522-4

5. Matheson LN (1988) Symptom magnification syndrome. In: Isernhagen SJ (ed), Work Injury, Gaithersburg, Maryland, Aspen Publishers: 257-82

6. Marshall RD, Olfson M, Hellmann F et al. (2001) Comorbidity, impairment, suicidality in subthreshold PTSD. Am J Psychaitry 158(9) 1467-73

7. Vlayen J, Kole-Snijders A, Boeren R et al. (1995) Fear of movement / (re) injury in chronic low back pain and its relation to behavioral performance. Pain 62: 363-72

8. Schrader H, Obelieniene D, Bovim G et al. (1996) Natural evolution of late whiplash syn- drome outside the medicolegal context. Lancet 4; 347(9010): 1207-11

9. Ferrari R, Kwan O (2001) The no-fault flavor of disability syndromes. Medical Hypotheses 56(1): 77-84

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10. Linton, R (1936) The study of man: an introduction / by R Linton. – Student’s ed. – New York:

Appleton-Century-Crofts (The Century social science series)

11. Kirmayer LJ, Young A (1998) Culture and somatisation: clinical, epidemiological and ethno- graphic perspectives. Psychosomatic Medicine 60: 420-30

12. Perrin E (1996) Douleur et culture. Le point de vue d’une sociologue. Doul et Analg 4: 91-7

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