Disease,illness,phenomenology and narratives

Everyone has direct or indirect experience of being ill or looking after someone who is ill. As clinicians and often as clinical researchers we are acutely aware of disease. Often professionals in healthcare irrespective of their discipline are trained to diagnose, treat and manage diseases. Individuals who are in distress due to physical or psychiatric disorders see their experiences as an illness. As Eisenberg (1977) identified the difference between disease and illness. He described illnesses as experiences of discontinuities in states of being and perceived role performances meaning that there are effects on the individual’s social functioning. In the context of scientific paradigm of modern medicine, he saw disease as abnormalities in the function and/or structure of body organs and systems. He described disease as literally dis-ease which is to do with pathology and the illness as the conversion of pathology into social dysfunction. This social dysfunction is what often brings ill individuals to clinics to seek help. Eisenberg (1977) argues that doctors treat diseases while patients are interested in managing illnesses. The impact of illness includes social dysfunction which affects both the individual and those around them. It affects families, carers and community at large in multiple ways both directly and indirectly.

Carrel (2013) describes the medical approach to disease as naturalistic which is a broad spectrum of views focussing on physical facts which are used to explain the human world. The observations are objective, objectifying, neutral (supposed to be but often biases creep in according to factors like gender, clinical interest, specialty and ethnicity) and third person (Carrel, 2013, p. 10). By definition, the clinical observation should be objective which then focusses on a list of symptoms in order to reach diagnosis which fits in with prevalent diagnostic categories. In a clinical medical consultation often patients answer the questions they are asked and clinicians may not explore aspects of illness. It is well recognised that diagnoses are important and helpful at a number of levels, but patients often do not fit into neat diagnostic categories especially in psychiatry. They are also more likely to be interested in social functioning. Anecdotal clinical observations show that most patients can live with their symptoms provided they have financial stability, a roof over their head, a job and relationships. They are keen to manage their illness. So how do we ensure that clinicians focus on what their patient is looking for. This is where phenomenology and illness narratives come into play.

Phenomenology is the bed rock of understanding a psychiatric patient’s experiences and perspectives along with their impact on the individual patient. Phenomenology is the first person lived experience with the emphasis an individual with distress places on their functioning in the context of their external physical environment. This moves the focus to illness rather than reductive biological one. Carrel (2013) notes that by doing so the emphasis shifts to the lived experience of body or mind dysfunction and deals with global disruption of habits, capacities and actions of the person who is ill. Psychiatric training often commenced with understanding of phenomenology. In many settings across many countries, this has been replaced by diagnostic questionnaires and algorithms which are reductive and often the patient experience gets lost. Phenomenology focusses on a philosophical approach looking at, studying and describing things as they appear to an observer. In reality, these will vary according to individual’s training and experience as well as personal biases as mentioned earlier. Subjective experience can be difficult to describe for a variety of reasons such as language, lack of vocabulary or verbal dexterity, socio-economic and educational status.

The explanatory models of the patient and their carers may well vary from those of the clinician treating them. Kleinman (1980) described the key questions the patient may have in the context of the explanatory models and their view about what is wrong with them. Furthermore, they may have supra-natural, natural, medical, social or a mixture of these as their explanations about what is wrong with them, what is likely outcome and where they should seek help from. Similarly, clinicians have explanations and explanatory models which may not match those of the ill individual. This dissonance can have a major impact on therapeutic engagement. As Eisenberg (1977) noted that in many cultures, traditional healers also redefine illness as disease: because they share symbols and metaphors consonant with lay beliefs especially as they are more likely to be rooted in local cultures and communities. Their healing rituals are likely to be more responsive to the psychosocial context of illness

Normativist approach to illness focusses on and relies on norms which are often culturally defined and described. This is especially pertinent in psychiatry as ideas of madness vary. Social components and their impact on individual’s illness becomes incredibly important. What is seen and accepted as normal in one culture may well be deviant or abnormal in another. In addition, individual identities tend to play a role at multiple levels. Every individual has multiple micro-identities which influence identification of dysfunction and their impact upon the physical and sociocultural worlds of the individual. In turn, physical and sociocultural worlds influence the individual at multiple levels. These overlapping worlds are likely to influence identification of distress, its labelling, sources of help seeking and outcomes.

Individual identity is that of personhood as well as mind and body. Symptoms experienced by an individual in the psychiatric context can be physical, mental or a combination of both. Thus, the Cartesian mind-body dualism although prevalent in Western medicine often does not work very well as mind and body do influence each other. These aspects are further affected by habits, memory, past experiences including those to do with illness, etc. The body is both biological and lived. Medicine is both personal and impersonal and this can cause tension as for the patient it is personal whereas for the clinician it is minimal.

In understanding the components and the phenomena while exploring phenomenology, narratives of illness can be extremely helpful. This is exceptionally pertinent when exploring chronic illnesses which may be peppered with periods of health. Understanding coping mechanisms of the individual and the care-partners can be part of the narrative. It is important to bring back narratives in psychiatry as advocated by Kleinman (1989).

Adaptability and creativity in the illness needs recognition (Carrel 2013, p. 95). Developing socio-psycho-bio-anthropological models of understanding illness places the focus on managing illness and functioning of the individual. As Eisenberg (1977) proposes, it is the social (and cultural) matrix that determine when and how the patient seeks help, who from and type of help. Subsequently, their adherence and compliance with the recommended therapeutic regime will determine outcome especially functional ones. When physicians dismiss illness because ascertainable ‘disease’ is absent, they fail to meet their socially assigned responsibility (Eisenberg, 1977). Adaptability at a social level can lead to new and fulfilling personal activities. As Carrel (2013) advocates, ‘if health care practitioners devoted more time to understanding the experienced illness, much of the misunderstanding, miscommunication and sense of alienation that patients report might be alleviated (p. 52)’.

Narratives and phenomenological approaches are crucial in our understanding of what patients are going through. Health professionals may find this challenging due to lack of time or training, but these challenges can and must be overcome. Understanding lived experience of the patient can help the clinician at a number of levels influencing better engagement and better outcomes. The concept of health and illness as extremes of health needs urgent change. Models of care and cure need rethinking and redefining. A shift to narrative psychiatry is essential. This can come about only by re-integrating scientific and social concepts of disease so that illnesses can be managed effectively. In these changing times with increasing impact of social media, AI and algorithms, it is urgent that we revisit diagnostic systems, ensure that they are multi-dimensional and fit for purpose for clinical research and clinical care.