These are dangerous and difficult words used in many powerful ways: if considered disabled, you get disability benefits; if you are considered sick, you may get sickness benefits. A disease may make you eligible for a critical illness policy payout. Labels incorporating any of these words can significantly impact your life. Unfortunately, the interpretation of these words – the meaning attached– varies considerably between people and in different contexts. I have discussed this difficulty in knowing what words mean for disability and rehabilitation. I wish to discuss disease, sickness, and illness in more detail. My thesis is that words used in healthcare are influenced by culture and cannot be considered independently of the social context.
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No matter how they are construed, medical systems are both social and cultural systems. That is, they are not simply systems of meaning and behavioural norms, but those meanings and norms are attached to particular social relationships and institutional settings. To divorce the cultural system from the social system aspects of health care in society is clearly untenable.
Arthur Kleinman, 1978.
What is a malady? A preamble.
I will use the word malady as an all-encompassing word to cover the four concepts we are discussing, disease, illness, sickness, and disability. Bjørn Hofmann suggests using this word, which is not widely used and carries no baggage.
The Oxford English Dictionary [OED] describes malady as a disease or ailment, but the Cambridge English Dictionary adds another meaning, “a problem within a system or organisation,”. This is particularly apposite because it encapsulates what we are talking about because all four words refer to dysfunction within the holistic biopsychosocial model of illness, each taking a different perspective. The Merriam-Webster dictionary also suggests a second all-encompassing meaning: “an unwholesome or disordered condition”.
Why is this important?
I am discussing words used widely in healthcare, social care, political discussions, and society. The concepts embodied in the words influence many decisions about individual patients and people with a malady. All four terms are closely intertwined, and it is easy to misinterpret them when different people use them in slightly different ways.
Words act as labels, and within healthcare, patients require a label for their problems. Getting a label validates their illness, showing they are sick because they have a disease, and if they have difficulties with some activities, it also validates their disability.
Therefore, it is crucial to agree on what we mean by:
- Illness. What is an illness, and how is it different from disease or sickness?
- Sickness. What does the word sickness mean (excluding the meaning of vomiting)?
- Disease. What is a disease? Is a disease a diagnosis? Is headache a disease? Or migraine?
- Disability. What is disability? If you have a disability, are you sick? Or are you ill?
Consider headache. Undoubtedly, headache disrupts normal daily activities; it is a significant cause of not working and taking sick leave. But there is rarely any pathology (disease; structural abnormality within the body) underlying it. At the time of the headache, the person is presumably sick (unwell), but does the person have an illness? Would daily headaches lasting one hour be an illness? If so, how about once a month (not tied to a menstrual cycle)? Can one be sick or ill in the absence of disease?
From a clinical and patient perspective, the diagnostic process should identify the causes of a problem, not only the reasons that can be treated. It should allow the healthcare professional to give a prognosis and identify actions that might reduce or remove the problem. At the end of the consultation, most people expect a name for their malady, asking, for example, “What is the diagnosis?”.
They expect a 1–2-word answer, and this label is used as a shorthand term for all their problems when talking to friends, telling an employer, applying for financial support etc. The difficulty of using a condensed label is that it is condensed; it is the best fit for a complex situation, but, despite its apparent precision, it is imprecise and does not accurately describe the person’s situation.
Let us use the word “illness” to stand for what the patient feels when he goes to the doctor and “dis-ease” for what he has on the way home from the doctor’s office. Disease, then, is something an organ has; illness is something a man has.
Eric J Cassell, 1976. Illness and Disease
What problems arise from labels.
Before discussing the four words of interest, we must consider the consequences of using a single word as a label or signifier of a complex condition.
There are positive consequences. Properly used, a word summarises a mass of information. It gives the audience an immediate framework, making it easier to interpret some phenomena, make appropriate comments, or ask relevant questions. Also, if used with understanding, it allows collecting and collating data across populations and over time – labels are essential for all epidemiological studies. Clinically, they can indicate the investigations that might help and the treatments most likely to succeed.
All these undoubted benefits and other benefits depend upon the user’s understanding that the word is imprecise, may be inaccurate, and does not give any detail. For example, the labels of stroke, multiple sclerosis, and Parkinson’s disease are wrong in many instances, depending on the precise circumstances. Conversely, the absence of a label does not indicate that the person does not have the condition signified.
Many consequences may be harmful, distressing or, occasionally, dangerous. Most arise through misuse or misinterpretation of the label when the other person or the group or organisation concerned fails to understand the nature of words. The context always determines the meaning of a word; meaning in one context cannot necessarily be transferred to another.
At a campfire where many logs are placed on one end to be used as chairs, I could say to a newcomer, “pull up a chair and have some food,” and they would know precisely what I meant. If I then went to a shop and ordered ten chairs, I would be surprised to receive ten logs, ten beer barrels, or ten crates, though all can be sat on and used as chairs. The meaning of the word is determined by context and use.
Thus, a term applied in a professional encounter, giving a patient a signifier of their situation, should not be used to determine treatment or any other intervention, including access to financial benefits. That is a misuse. Before giving a treatment or taking any other action, the responsible person (or organisation) must collect much more information relevant to the decision. The label should guide the person towards asking more targeted questions; it should not be used alone.
The word used also has social consequences. In addition to their meaning, many titles acquire emotional, judgemental overtones that may lead to stigmatisation, treating the person as unworthy or flawed or as less than a person worthy of respect. Many disease labels carry a stigma. One prominent example is ‘functional illness’, which leads many people to decide that the patient’s healthcare needs are non-existent or should have less priority than those with other conditions. Accumulating evidence shows that people with functional conditions such as non-epileptic attacks have a poor prognosis, have equivalent healthcare needs and should have equal access to resources.
We will start with disease. The Oxford English Dictionary describes disease as “a disorder of structure or function in a human, animal, or plant, especially one that has a known cause and a distinctive group of symptoms, signs, or anatomical changes”. It is derived from Old French, meaning ‘lack of ease’. It is usually used as a comparative opposite to health, with health being defined as the absence of disease.
Another description of disease, from Defining ‘health’ and ‘disease’ by Marc Ereshefsky
is “a type of internal state which is either an impairment of normal functional ability, i.e., a reduction of one or more functional abilities below typical efficiency, or a limitation on functional ability caused by the environment.”. He discusses the difficulty in establishing what counts as a disease because there is no criterion against which an internal state can be defined as abnormal, just as Georges Caguilhem argued in 1943.
Marc Ereshefsy argues that we should first describe the person’s biological (physiological and anatomical) state and then describe the state’s value (desirable or not). Then he concludes, “After providing a state description and deciding whether the state in question is desirable or not, there is a sociological question concerning which aspect of society treats (successfully or not) such states. If treatment falls under the expertise of health care workers, then it is a medical condition. If it does not fall under the purview of health care workers, then it is not a medical condition. Simply put, whether an undesirable state is a medical state depends on how the division of labor is drawn in a society.”
Bjørn Hofmann, in a review of disease, illness and sickness, agrees that “there is substantial agreement that physiological, biochemical, genetic, and mental entities and events are the basic phenomena of disease, and most definitions contend that disease can be observed, examined, mediated, and measured, and is objective in this sense. It is also the target of health professionals who want to classify, detect, control, and treat disease, ultimately in order to cure.”
I have similarly equated disease with pathology, a disturbance of a person’s anatomical structures or physiological functioning.
The difficulty of defining disease is challenging for psychiatric conditions. Undoubtedly, some patients with psychiatric maladies have a definite visible change in anatomy and physiology, such as in Huntington’s disease or the psychiatric presentation of a cerebral tumour. There may also be subtle changes in the neurodevelopment of people with psychosis.
But, for most people with mental health problems, there is unlikely to be a single structural or functional disorder within the body; psychosocial and environmental influences predominate. Further, conditions such as ‘alcoholism’, drug dependency, and gambling addiction are difficult to conceive as ‘diseases’ because the causes are social and considering that they are diseases depends considerably on culture.
I conclude that disease refers to the contribution of the person’s internal body structures and function to a person’s malady. When that contribution is significant and influences treatment and prognosis, it is reasonable to use the term disease. However, suppose there is no known, observable anatomical or physiological state of sufficient strength to affect treatment or prognosis. In that case, it is better not to refer to the condition as a disease, and a description should be used. Last, although the disease is externally validated and objective, its absence cannot be equated with health.
“The medical encounter is but one step in a more inclusive sequence. The illness process begins with personal awareness of a change in body feeling and continues with the labelling of the sufferer by family or by self as “ill.”” and they later summarise illness as “experiences of disvalued changes in states of being and in social function; the human experience of sickness.”
Kleinman et al.1978
The two quotations above capture two vital aspects of illness:
- It is the person who decides if they have an illness
- Illness is the person’s experience
In their paper, “Culture, Illness, and Care”, Kleinman et al. explored the influence of culture on illness, particularly the importance of the model of disease used by the person and their social circle because the model determines the analysis of the phenomena experiences and sets the person’s expectations. The biomedical model of illness is the dominant model in most developed countries, which explains the focus of healthcare on disease.
In his chapter, Disease, Illness, and Sickness, Bjørn Hofmann describes illness as having “emotions and experience, such as anxiety, fear, pain, and suffering, as its basic phenomena.”, also emphasising the subjective, experiential and existential nature of the illness; it may lead people to revaluate their life.
An analysis of illness by a philosopher with a chronic respiratory disorder, Havi Carel, suggests that “Three aspects of existence are significantly modified by illness: embodiment, meaning, and being in the world.” She explores how illness may have philosophical consequences for the ill person who may change their lives and what they consider of value.
In a later book, she refers to five losses that characterise illness, first put forward by Toombs: the loss of wholeness, certainty, control, freedom, and the familiar world. She then points out that the person may retain or recover a sense of well-being and even consider themselves not ill, despite continuing problems. I have discussed this phenomenon, known as the disability paradox, when measuring the quality of life.
In summary, the central characteristics of illness are that the person decides if they have an illness. The person’s cultural environment will strongly influence that decision, mainly through the association between culture, the explanatory model of illness used, and whether the interpretation of their experiences as symptoms (of illness) or normal and expected.
Sickness has two descriptions in the OED, “the state of being ill” and “the feeling or fact of being affected with nausea or vomiting.”. They describe two entirely different phenomena, and we are only interested in the former.
The analysis by Bjørn Hofmann suggests that, in contrast to illness which the patient constructs, sickness is a socially constructed phenomenon representing a general agreement that the person’s condition allows access to care and support. Being accepted as sick validates the patient’s assessment that they are ill.
Bjørn Hofmann suggests that sickness is based on social expectations, conventions, policies, social norms, and social roles (e.g. patient, healthcare worker, family carer). The social determination of who is sick is to “determine whether a person is entitled to treatment and economic rights, exemption from social duties, such as work (sick leave), and whether a person is legally accountable for their actions. and that sickness.” He also points out that society gives different values to different maladies, with some conditions such as cancer and heart disease being valued more highly than most functional disorders and mental health conditions.
One of the central features of sickness is the close association with the sick role, a concept developed by Talcott Parsons in 1952. Contrary to some critics’ beliefs, he recognised the importance of the patient’s social context (culture) and that the nature of the role would evolve, as it has. He put forward three key features of the role:
- The person is not at fault; they are not morally responsible for their condition, but they have a moral responsibility to recover from it;
- The person is exempted from their usual social obligations (work, looking after children etc.) and is expected to exempt themselves;
- The person is expected actively to seek help and follow the advice of healthcare professionals.
Chris Shilling has reviewed changes in the concept of the sick role between 1952 and 2002 and discusses some difficulties. For example, the culture in 1952 included a commitment to contribute actively to society, which Parsons attributed to the influence of religion. Nowadays, many people are more concerned with maintaining and even enhancing their bodily function and are less concerned with undertaking productive activities.
Chris Shilling summarises this change as arising from three ideas “the competing demands of a consumer culture that emphasises the importance of self-image and pleasure, and a work culture which continues to prize the Puritan virtues of hard work alongside an increased concern with the presentation of self” and he concludes that “the need to develop a healthy, adaptable and instrumentally efficient body has become an important variable in social success.” In other words, healthcare is expected to cure disease, alleviate illness, and establish and maintain a healthy body with high functioning abilities.
Consequently, some expect healthcare to assist with increasing their well-being and functional abilities. This can be seen in the increase of people using and sometimes expecting healthcare to provide Tai Chi, Yoga and Pilates for their problems. More generally, while it is well-established that exercise “is good for you”, it is less evident whether the activity should be considered a health treatment to be funded by healthcare budgets.
In summary, sickness is a state defined by society, which uses the classification of being sick to delineate who may receive what care and support from the community.
I discuss the definition of disability in-depth on another page, where you will find a similar discussion about the difficulties in defining it and how cultural and personal factors are vital in understanding disability.
The summary stated:
Disability, like all words, carries many meanings within it so that the underlying construct cannot be defined precisely to allow categorisation into separate classes. I have mentioned this when discussing rehabilitation interventions. Rather than despair, we should accept that we need to consider each patient individually; they should not be considered ‘disabled’ They should be regarded as “Jeremy, who needs someone within him when walking, and has difficulty explaining what he wants, but enjoys watching Manchester United play football”.
This analysis suggests that the four words, disease, illness, sickness and disability describe a person’s malady from four different perspectives,
- an objective, publicly demonstrable perspective – disease
- a subjective, person-centred perspective – illness
- a societal, collectively determined cultural perspective – sickness
- a functional perspective which is externally observable but is valued independently by the person and by society – disability
The perspectives are interrelated with close associations, but there are maladies where only one perspective is present, and all combinations are possible. Each word needs a fuller description if one wishes to make any decision about or give advice to an individual.
On the other hand, the concepts are helpful both when analysing a person’s situation and the terms are applicable when undertaking studies at the level of a whole population. The ideas are also valuable in discussions that span multiple agencies such as Health, Social Services, Employment or education.