Philosopher Sabrina Coninx of Vrije Universiteit Amsterdam has received an ERC Starting Grant for her research project 'Narrating the Invisible: Stories of the Self in Chronic Primary Pain'.
In the project, Coninx investigates the nature of illness narratives in the case of chronic primary pain – the stories that patients and those interacting with them use to make sense of the illness and the stories that others tell about the illness, and how this influences the way in which the patients make sense of their own conditions.
Coninx studies what role those stories play in how patients, care providers, and society deal with chronic primary pain. “I focus on the invisible side of chronic pain and the way stories about illness influence experience, self-understanding, stigma, and care,” says Coninx.
Chronic primary pain is a relatively new diagnostic category within the international classificatory system of disease (ICD-11). The diagnosis is made when there is persistent pain that cannot be explained by a demonstrable biomedical condition (e.g., joint displacement, cancer, arthritis). Consequently, chronic pain is no longer viewed exclusively as a symptom of another disease, but redefined as an illnessin itself.
Precisely because the pain is often biomedically ‘invisible’ and a clear physical cause is lacking, this new diagnosis may provide a narrative framework for people with chronic primary pain to convey and articulate their experiences. At the same time, it may constrain interpretive possibilities and determine which stories about illness are seen as legitimate.
Stories determine how pain is understood
Coninx therefore investigates so-called illness narratives: the stories with which people give meaning to their illness and their changed lives. Such stories are not just about symptoms. They can also describe how an illness is caused, what the illness means for relationships and work, how someone views themselves and their future, and how they expect themselves and others to think, feel, and behave.
The research brings together various perspectives from philosophy, medicine, and other disciplines. Coninx analyzes, among other things, the structure of illness narratives and the relationship between such stories and diagnostic categories. She also investigates which psychosocial functions stories can have.
“With my research, I want to provide insight into an important area of tension. A story can help people understand their experiences and find recognition. At the same time, certain expectations about how a ‘good’ patient is supposed to behave or what ‘real’ pain is supposed to look like can actually lead to stigmatization and reduced quality of care,” says Coninx.
Coninx’s research aims to improve the interaction between patients and those around them. When pain is not visible or medically explainable, communication regarding an illness can be particularly complicated. A better understanding of how patients recount and interpret their experiences can contribute to greater recognition.
An important part of the research project is also a better understanding of narrative competence: the ability to recognize, understand, and respond to illness narratives in an appropriate manner. Coninx investigates how this competence can contribute to more meaningful clinical contact with people living with chronic primary pain.
In doing so, the research can contribute not only to the philosophical understanding of illness and pain but also to broader questions regarding how healthcare deals with conditions that cannot easily be defined by biomedical abnormalities.
At the intersection of philosophy and medicine
Sabrina Coninx has been an Assistant Professor at Vrije Universiteit Amsterdam since 2022 and specializes in philosophy of mind and philosophy of science. Her research is situated at the intersection of philosophy, medicine, cognitive science, and technology, with a particular focus on pain and suffering.
She has previously researched both acute and chronic pain. In doing so, she developed, among other things, conceptual instruments to systematically describe the lived experience of pain and analyzed biopsychosocial models of pain and the role of environmental factors in harm in medical contexts.
With the ERC Starting Grant, Coninx is given the opportunity to further develop this line of research. Narrating the Invisible aims to lay a foundation for a better understanding of the stories people tell about chronic primary pain - and of the influence those stories have on recognition, stigma, and the quality of care.