5B: Rethinking Changing Concepts of Health and Disease
Rethinking changing concepts of health and disease
Between the poles of constructivism on the one hand and realism on the other, medical historians have tended to focus on the social and cultural of health and disease, without getting rid of ‘the biologically real’ entirely. This philosophical position has not received the historiographical reflection it deserves. What is not socially and culturally constructed about disease and health, and what role should it play in our histories? The project ‘Health and disease as practical concepts’ proposes a new reading of Fleck’s active and passive elements of knowledge as a nuanced solution, using historical cases of diabetes and chronic pain.
Presentations of the Symposium
‘Except for the sugar, one is completely healthy’: concepts of diabetes mellitus in the Dutch Diabetics Association (1945-1970)
In 1947, a Dutch diabetic wrote to his association of fellow diabetics: ‘I consider it incorrect that […] one is treated as a sick person, while, except for the sugar, one is completely healthy.’ And he was not the only one. Organised diabetics conceptualized their chronic disease – diabetes mellitus – mainly in terms of health during the first decades of the existence of the Dutch Diabetics Association (Nederlandse Vereniging van Suikerzieken) between 1945 and 1970. They campaigned for a new understanding of diabetics as ‘normal’ members of society, and redefined their illness in terms of independent health. But diabetics could not simply declare themselves well. Reaching this goal entailed dealing with ‘the sugar’ by living responsibly according to medical prescriptions. This meant that organised diabetics also had to find new ways to relate to medical authority and vice versa.
This paper argues that looking at organised patients is crucial for understanding changes in concepts of disease and health in different social contexts. The journal of the Dutch Diabetics Association provides early source material to enable this. Different from histories based on individual patient files written by doctors in a clinical context, this source material enables a history of the patient perspective in daily, social life. Disease concepts necessarily differ in these different contexts – but this does not mean that these concepts are solely socially constructed.
‘A disease in its own right’: a social history of the definition and classification of chronic pain
‘Chronic pain constitutes an immense, invisible crisis at the center of contemporary life’. In this one sentence in The Culture of Pain, David M. Morris summarized a disturbing, paradoxical state of affairs. On the one hand, chronic pain entails a huge burden of disease at high social costs, but on the other hand, it remains a largely misunderstood, elusive phenomenon, which hardly generates interest from medical researchers or health policy circles. There is, however, a possible light at the horizon. In the 11th edition of the International Classification of Diseases (ICD), which is expected to be implemented in 2022, a separate category of ‘chronic pain’ is included. By classifying chronic pain as a disease (category), rather than as a symptom, advocates hope to generate more attention for chronic pain and its management.
In this paper, it will be argued that the emergence of the new, distinct category in the ICD-11 should be placed against the historical backdrop of the development of pain medicine since the 1970s, accompanied by an increasingly powerful advocacy of the recognition of chronic pain as ‘a disease in its own right’. From this, it will follow that the definition and classification of chronic pain is and has been a continuing historical process, determined by both social and biological realities and serving pragmatic and performative rather than intellectual and scientific ends. This will, finally, help to define the social utility, the ‘biological’ constraints, and the potential negative side-effects of the new classification of chronic pain.
Between realism and constructivism: active and passive elements of diabetes and chronic pain
The two previous talks reveal a variety of different ways of understanding sick people. Patients and their doctors want to get chronic pain recognized as a disease, because of the social function of the disease status. In the case of diabetes, patient groups championed the view that by living responsibly they could become well, rejecting the disease label because of its social significance.
How do historians take this social influence on ways of understanding sick people into account without washing their hands of the question of truth? Monica Green has argued that historians writing the history of diseases face a dilemma: to investigate the social ‘reality’ of disease as historical actors understood it, or to make use of modern biological knowledge to investigate what ‘really’ happened to sick people in the past. Appealing to the philosophical work of Ludwik Fleck, constructivist historians such as Andrew Cunningham deny that it is possible to investigate what ‘really’ happened in the past, as even biological reality is determined by social reality. Charles Rosenberg has tried to mediate between these constructivist and realist poles, arguing that disease has a biological reality that is “framed” by society in different ways; but even this admits that there is a biological reality that needs taking into account. By re-reading Fleck’s account of the active and passive elements of knowledge, we can show how to recognize a great variety of different ways of understanding sick people, without accepting that anything people believe is true.