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Disease versus Illness in Mental Health: The use of Narratives and Explanatory Models to bridge the gap

Disease versus Illness in Mental Health: The use of Narratives and Explanatory Models to bridge the gap

Nooriya Uddin1, Sean Cross2, Dinesh Bhugra3
1 BSc - MBBS - final year, Guy’s, St Thomas and King’s Medical School, Denmark Hill Campus, London.
2 Psychiatrist, Consultant Psychiatrist, South London and Maudsley Foundation NHS Trust, Denmark Hill, London.
3 Professor of Mental Health and Cultural Diversity, Institute of Psychiatry (KCL), De Crespigny Park,  London.

Summary: The core of any therapeutic activity is the clinical interaction between the patient and the clinician. Patients attend the session having followed a certain pathway into care and expecting a particular kind of help or intervention. Often this expectation is influenced by their age, gender, social status and explanatory models which determine what they see as the cause of their distress and what intervention will alleviate it. In addition education and economic status will also influence explanatory models. In this paper we describe the application of explanatory models in managing patients. There is no doubt that culture will affect this approach which will be particularly useful for south Asia.


Much of medicine revolves around the dialogue between doctors and their patients. Mental health is explicitly an area of medicine where talking and listening are recognised as being therapeutic tools (Brown et al., 1996). The process of talking and listening can be seen as a platform for narratives to emerge between doctors and patients.  However, even in the domain of mental health there is disparity between the patient’s biographical dialogue and the doctor’s professional one (Launer, 1999).

One way of expressing these differences is through the terms ‘disease’ and ‘illness’ described by (Helman, 1981). Disease is seen as the pathology that makes up the medical model of ill health, and constitutes properties which have recurring identity in whichever case they appear. Illness is the term used to describe the subjective response of the patient to being unwell; it takes into account perceptions of the origin and significance of that event, as well as how it affects ones behaviour and relationships with other people (Kleinman, 1980).

Although disease and illness possess different meanings, the two are not mutually exclusive, as they are both components of one process. In this paper we explore this association further. We shall discuss narratives and explanatory models and the contribution they make towards bridging the gap between disease and illness in mental health.

Mental ‘Disease’: The Biomedical Lens

The biomedical approach to ill health is largely focused on objectively analysing the changes in the human body, making reference to the quantified numbers which have been set to distinguish ‘normal’ from ‘abnormal’ or in medical terms – pathological. Deviations from the biochemical boundaries, lead to the establishment of diagnostic criterion for the disease.  Thus disease can be seen as being universal, in that it will have a recurring identity with characteristic underlying cause, signs and symptoms, treatment and prognosis, irrespective of the culture or society it appears in.

Disease and illness need to be differentiated. Disease is pathology and illness is broader and covers social implications of disease. History taking in itself is largely disease focused. The past medical history, family history, drug history are all pieces of a jigsaw which typically forms a disease narrative due to its objective nature.

Engel (1989) argues that this approach may be seen as being evident of mind-body dualism, a concept which divides man into ‘mind’ and ‘body’, the former to be studied by philosophy and religion and the latter by science. He continues to add that medicine focuses on identifying while often ignoring ‘the patient and his attributes as a person, a human being’. Furthermore, the biomedical lens of ‘disease’ if often criticised for being reductionist in its approach as it is primarily centred on the diseased organ, system, or a region within the body as opposed to the individual in question and their wider environment, suggesting that ‘disease’ does not apply in the absence of disturbance at a chemical level (Engel, 1989).  This rigid concept can be seen as causing a dilemma for the realm of psychiatric medicine where some conditions may have limited biomedical basis.

Nonetheless, Kety (1974) expresses the appropriateness of the medical model in both somatic and mental diseases, by comparing diabetes mellitus and schizophrenia (Kety, 1974).  Evidence of varying aetiologies, as well as genetic and environmental factors exists in both conditions. The reductionists view is that although diabetes mellitus has a more advanced biochemical basis at present, schizophrenia will ultimately reach the same status. In practice however, both ‘mental disease’ and ‘somatic disease’ cannot be seen as independent entities, as focus on merely the biomedical without considering the psychosocial can have repercussions for patient care (Engel, 1989). Furthermore, even if the presence of biochemical indicators of disease, i.e. raised blood sugar level in diabetes, or dopamine activity in schizophrenia, has recurring identity; the experience and subjective response will certainly vary from one person to another.

Moreover, unilateral focus on the biomedical model may introduce self-fulfilling prophecies, where doctors themselves run the risk of compartmentalising patients according to their disease label (Launer, 1999). For example, when an individual is labelled as having schizophrenia; they may be marginalised by being excluded from normal conversations and interactions (Launer, 1999). Engel (1989) argues that “the most essential skills of the physician involve the ability to elicit accurately and then analyse correctly the patient’s verbal account of his illness experience”. In light of this statement it can be suggested that, as well as eliciting essential medical information from a patient to reach a working diagnosis, it is equally vital for the doctor to explore patients’ accounts of their experiences. Incorporating the patient’s biography is an essential part of patient care, reducing the possibility that therapy will dehumanise the patient, stripping an individual of their unique illness experience (Kleinman, 1988).

Mental ‘Illness’:
The Narrative Lens

Contrary to the biomedical model, the term illness is concerned with a patients experience and their subjective accounts.  Narratives provide a platform for patients’ stories of their illness and suffering to be portrayed from an angle which may expose their inner feelings and sense of suffering, providing perspective, meaning and context for their predicament – ultimately an insight into their perception of illness (Greenhalgh and Hurwitz, 1998). Patients too, have reportedly expressed that psychiatric approaches can sometimes be “mechanistic and dismissive of individuality” (Rogers et al., 1993).  Brody (1995) suggests that ‘the physician who listens carefully to the patients’ life story of illness lays the ground work for all the dimensions of symbolic healing’.

Over the years, there has been growing awareness on the significance of narratives within mental health. Roberts (2000) argues that stories give both emotional and cognitive significance to the illness experience and attach moral weight to actions and events. If we consider a patient diagnosed with mental illness, attributing meaning to what may seemingly be an alarming and upsetting experience could allow for the individual to make sense of the deviation from ‘normality’. The applicability and appropriateness of this notion may be questioned for severe mental illness i.e. psychotic episodes. However, Laing (1960) points out that “the mad things done and said by the schizophrenic will remain essentially a closed book if one does not understand their existential context”. Thus although a narrative approach may not shed light on the complexities of psycopathography, such as the explanations of delusions and hallucinations, it is geared more so towards their content and meaning, which will ultimately vary from one individual to another.

Strauss (1994) advocates the importance of focusing on the subjective aspects of a person’s experience referring to an example of a young man with longstanding history of schizophrenia. This young man was followed in research throughout the course of 10 years consecutively. When he was asked about which period he regarded as the worst year of his life, the patient identified a year where he felt particularly vulnerable and abandoned as a result of his family rejecting him. What was interesting about this particular case is that, the year that the patient had identified was in fact, a year where the researchers objectively regarded him as being well. This reflects that even within psychiatry there can be a tendency to neglect a patient’s personal story. In situations where patients’ appears to be objectively well, subjectively speaking their quandary may persist, something which can get overlooked in everyday practice.

Furthermore, the role of doctors in the process of creating the illness narrative should not be taken lightly, as they have the potential to take on an important supportive role in the creation of the illness narrative and help patients in their coping process – even contributing to their personal growth (Launer, 2006). In order for this to be effective, the illness narrative must be seen as and understood as being a part of the patients life story (Kalitzkus and Matthiessen, 2009).

However, in reality the practice of this may often prove to be challenging. This is highlighted by Helman (2006) in the chapter ‘An Autumn Leaf’ from the Suburban Shaman.

“The curse will destroy everything that I have got”
“I think may be my husband and his brother, they did it”.
Above are the words expressed by a patient in attempt to express her insight into what she believed to be the problem, in essence – her illness narrative. Greenhalgh and Hurwitz (1998) argue that it is essential that the patient’s story is not distorted and coerced to fit the patterns of science. However, due to the ‘power’ invested in clinicians by virtue of their background and training, clinicians can often be guilty of moulding the explanatory models of their patients (Kleinman, 1988).  Helman’s (physician) encounter with this patient raises important issues which may surface during the doctor-patient encounter. The doctor who is fixated on the biomedical model, where ‘disease’ takes priority, may be inclined to medicalise the patient as having a psychiatric condition, in an attempt for it to make sense in their disease narrative.

Later on in the chapter, the patients encounter with a vaid (traditional Indian healer) leads to her miraculous progress.

“the vaid says he has now got rid of the curse… and now we can sleep peacefully again!”

Thus, there can be serious implications when there is little congruence between the doctors’ and patients’ views of sickness.

The above signifies that exploration of the patient’s illness narrative can bring to light how factors such as culture can influence the illness narrative of a patient. Moreover, Helman’s encounter with this patient is an example of how co-creation of narratives is not restricted to patients’ – as the clinician’s story of a patient’s illness may be changed by the encounter and can subsequently inform the physicians understanding of the disease. It may be of additional value for clinicians to recognise and reflect on their own cultural identity which may be influenced by their medical training as well as their own ethnicity, values and beliefs.

Narratives in Practice

The multifaceted nature of narrative based medicine can be seen as unrealistic in everyday practice. To overcome these pre-conceived anxieties which may hinder the practice of narrative based medicine, it is recommended that doctors adopt an open attitude towards patients and their narratives. Kalitzkus and Matthiessen (2009) suggest that a set of narrative skills are required for this. These skills include: addressing patients as an individual, when establishing a diagnosis; being sensitive towards a patient’s illness experience as well as prioritising a patient-centred approach; practising narrative communication through exploring differences, hypothesising, actively listening; and Self-reflection.

In order to encourage greater understanding of the illness experience and promote professionals to look beyond the biomedical model of disease, Das Gupta & Charon (2004) expanded on the notion of Reflexivity. They applied this by asking a group of medical students to write about a time when they experienced suffering or bodily vulnerability. The conclusions drawn were that “the personal illness narrative allows the reader-writer to more fully enter the reality of the patient world by recognising (Attention), describing (Representation) and integrating (Affiliation) the similarities in their own experiences and those of the patient”. Applying this method in a wide spread manner with doctors may be one method of easing the challenges that many doctors face when trying to adopt a holistic approach to patient care. This is supported by Bolton (2001) who encourages practitioners to put their experience in words, and reflect upon them in a facilitated peer group.

Pennebaker & Seagal (1999) adopted a similar method of writing, which highlighted how narratives can have health benefits. They too point out that construction of stories is a natural human process which can allow people to make sense of their experiences and understand themselves. Providing structure and meaning allows for the emotional effects of the experience to be more manageable. They found that writing about an important personal experience for as little as fifteen minutes over the course of three days can improve mental and physical health (Pennebaker and Seagal, 1999). This study provides a practical approach for doctors to elicit patient narratives. Encouraging patients to keep a diary may prove to be both therapeutic for the patient as well as facilitate the formation of narratives, reinforce progress and encourage positive behaviour.
Challenges of Narratives

The implementation of narratives in everyday practice can be difficult for doctors as they may feel that they are in a very difficult position, trying to strike the balance between a role as an interpreter of patient stories and the world of biomedicine and the categorisations of ICD-10 (international classification of diseases, 10th revision). 

Although the significance of narrative medicine has been highlighted across literature, it is also important to recognise some of the problems that may be associated with it. Narrative approaches can take time and effort due to the fact the “significant technical and attitudinal change that is necessary does not come quickly” (Launer, 2002). In the process of listening to patients’ stories, it is important that the clinician does not get carried away. Gersie (1997) points out the possibility of the misapplication of stories. She brings to light the trend to associate sufferings to particular experiences which may create narratives that condemn the past and introduce a culture of victimisation.

Furthermore, it should be stressed that placing greater emphasis on the subjective aspects should not be done at the cost of the fundamental objective markers of any given condition. Kinmonth et al (1997) carried out a randomised control trial on patient-centred care of diabetes in general practice, which found that the clinicians concerned in the study did achieve greater patient satisfaction by incorporating patient-centred care. However, the trial had significantly poorer physical outcome for the patients, and this was the case for all objective indices. Thus a focus on narrative medicine, should not mean that “in treating the patient as a person we forget to treat the person as a patient” (Macnaughton, 1998).

Exploring ‘Illness’ through Explanatory Models

Also embedded in the course of narratives are patients’ perceptions and beliefs on what is wrong with them, their ideas about the cause and the likely outcomes. Kleinman (1988) developed the explanatory model which incorporated notions about an episode of sickness and its treatment. Evidence exists to suggest that patient satisfaction is enhanced when there is congruence in the understanding of distress and treatment between the patient and the psychiatrist. The explanatory model provides a valuable tool through which subjective experience of illness can emerge with an emphasis on the health beliefs of patients. This provides greater insight into the patient’s perceptions, building a bridge between the disparities which may exist amongst the doctor’s disease narrative and the patient’s illness narrative. The importance of exploring patient beliefs is further stressed as it has been suggested that what patients believe about their illness can have immediate influence on their experience with mental health services (Dein, 2002). Patients’ perceived causes of common mental disorders have also been recognised as strong predictors for short term prognosis and have been reported for being better predictors than diagnoses and symptoms (Henningsen et al., 2005) .

The explanatory model developed by Kleinman incorporated a set of questions in order to explore patient beliefs about their ill health. The table below is an example of the questions outlined by Kleinman.


Table 1 - List of questions developed by Kleinman (1980), pp.106





What do you call your problem? What name does it have?


What do you think has caused your problem?


Why do you think it started when it did?


What does your sickness do to you? How does it work?


How severe is it? Will it have a short or long course?


What do you fear most about your sickness?


What are the chief problems your sickness has caused for you?


What kind of treatment do you think you should receive? What are the most important results you hope to receive from the treatment?

Kleinman developed the above questions as means of enquiring into patient beliefs, in an explorative qualitative manner.  Such an approach is aimed at eliciting rich content which is shaped around the patient’s views, beliefs and illness narrative, enabling the patient to get better understanding of their illness, its meaning to them and the expected long term outcome (Bhui and Bhugra, 2002).

In recent years various instruments have been developed to elicit explanatory models. The Explanatory Model Interview Catalogue (EMIC) (Weiss, 1997) and Short Explanatory Model Interview (SEMI) (Lloyd et al., 1998) are instruments which have been created to explore explanatory models in a way which builds a bridge between quantitative and qualitative measures. Similarly, another instrument used to elicit explanatory models of physical illness is the Illness Perception Questionnaire (IPQ) (Weinman et al., 1996). The IPQ is different in that it consists of predetermined causal explanations of conditions from which patients are asked to select one which is best suited to their own perception (Bhui and Bhugra, 2002).

A study carried out by McCabe and Priebe (2004) implemented the SEMI to explore explanatory models of illness in schizophrenia . Participants recruited in this study were from four different ethnic groups. The findings of this study supported the notion that congruence between the patient’s and psychiatrists explanatory models led to greater patient satisfaction (Callan and Littlewood, 1998). Biological causes of illness was the explanatory models of the White people in this study, whereas African-Caribbean’s, West Africans and Bangladeshi’s were more likely to have social or supernatural explanatory models. Moreover, a biological explanatory model was related to enhanced treatment satisfaction and therapeutic relationships, but not with treatment compliance.

This study was also reflection of how explanatory models are shaped around context, thus explanations for the same illness may vary depending on when and where the explanation is given, who it is given by and to whom it is given. The ethnic variations of the sample provided valuable insight into how explanatory models can be largely influenced by culture. Eliciting the explanatory models was valuable in providing practitioners with greater understanding of patient perceptions as well as the cultural variations that can influence a patient’s attitude towards care and treatment. However, it is important to recognise that these findings should not be seen as being absolute for any given culture as even within a particular ethnic group differences will exist from one individual to another.

Challenges of Explanatory Models

Although the use of explanatory model instruments provide valuable insight, it is worth noting some of the limitations they possess. The use of SEMI in the above study allows for a semi-structured way of identifying health beliefs and views within a reasonably short time frame. However it can be argued that the quantitative nature of composing the data may be reductionist in its approach. This is due to the fact that condensing complex multilayered accounts of illness into fixed categories can result in the loss of contextual information (McCabe and Priebe, 2004) defeating the sole purpose of what the explanatory model was created to represent. In contrast to this, the EMIC involves a long interview, with process rules and a system of presenting data (Bhui and Bhugra, 2002). However that too has its limitations as it requires more time and can be costly.

Another issue that explanatory models face is the question of how stable they are. If explanatory models are to be employed by practitioners in routine care it is important to justify their use and how static they are over a period of time. McCabe and Priebe (2004) assessed the long term stability of explanatory models of illness in schizophrenia patients by interviewing patients on two occasions, 1 year apart . They found that in a number of areas i.e. concept, cause, treatment preference, inconsistencies existed between the baseline interview and the follow-up. These findings raise questions on the usefulness of explanatory models in predicting long-term outcome. However, it may be problematic to draw definitive conclusions as such. Explanatory models draw on a person’s experiences and views, which due to its very nature will be forever changing and not constant. Moreover, when introduced, they were not deemed to be ‘static mental templates that would remain constant and unchanging’ (McCabe and Priebe, 2004) .

Similarly, William & Healy (2001) carried out a study among a group of new referrals to a community mental health team, who were interviewed prior to a first appointment and once again within two weeks post appointment. In-depth interviews were used to elicit explanatory models and explore patients’ narratives. The study found that in seeking meaning individuals may hold several explanations simultaneously and these are not necessarily fixed and may move between varied and complex set of beliefs. The authors suggested that instead of taking patient beliefs as a set of coherent explanatory models, patients’ views should be regarded as a map of possibilities, which provides guidance for an ongoing process of ‘making sense and seeking meaning’ (William and Healy, 2001). Thus William and Healy propose the term ‘explanatory map’ rather than ‘explanatory model’.   In south Asia although cultures are significantly different from the western cultures where these notions were developed, there are similarities in seeing possible causes as natural or supernatural in which case they may wish to use multiple interventions at the same time. Under these circumstances the clinicians need to be fully aware of the models that are being used and also the potential for interaction between traditional medicines and allopathic prescribed medications. It is also likely that patients and their families may use dietary strictures or over the counter pills in addition as the patients and their families want to get better soon so that the patient can be an earning member of the community. There is another danger in these multiple help-seeking approaches which indicate that there may be conflicting messages in what is being explained by the traditional healer, religious leader or others. More research is required across different countries so that religious influences can also be ascertained.


Disease and illness can often be regarded as separate entities, even within mental health. This can have serious implications for patient care. The exploration of illness narratives and explanatory models provide clinicians with valuable insight into patients’ subjective account of illness and promotes patient-centred care. Illness narratives and explanatory models provide patients with an outlet to make sense of their illness experience as well as influence their experience with mental health services. Clinicians should recognise the influence that culture may have on a patient’s illness narrative and explanatory model. However, a focus on patients’ illness experience and subjective accounts should not isolate the significance of the biological model and instead a balanced awareness of the benefits and limitations of both should form the basis of clinical practice.


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