Illness, indefiniteness, diagnosis

Sculptures by Fabio Viale

Over on Twitter, Michael Ray tweeted this nice passage form Hari Carel’s book Illness, the Cry of the Flesh (2019):

“If illness is part and parcel of life, and on a continuum with health, then our experience of it will be as diverse as our experiences of health or of life in general. In other words, it would be difficult to generalize the experience.”

Illness is definite enough for us to see patterns in it. For example, frequent and severe pain often leads to help-seeking behaviours. But, it is not so definite to be describable in terms of fixed or rigid rules. If we do describe illness in terms of patterns, these must be sufficiently flexible to encompass a degree of indefiniteness – frequent and severe pain does not always lead to help-seeking behaviours.

This indefiniteness is important for human beings, as it allows for variations in our reactions to each other, and to what is happening within each person. Our reactions to others and to ourselves are not uniform, and often rely on context.

Imagine a people who articulated illness in terms of fixed rules; the behaviour of such a people would form simple patterns. Suppose,

• The people maintain that the ill person always continues normal social roles the person takes for the duration of the illness
• Normal role performance and responsibilities are continued so that the ill person can ‘battle through them’
• The strength of this continuation never varies directly with the severity of the illness

The lives of such a people would be very different from our own, and how we would relate to them is unclear. A concept of illness governed by definite rules would be unable to cope with the variation, which for us, is the essence of life itself.

Parallel to the indefiniteness of the concept ‘illness’ in everyday life, is the indefiniteness of the diagnostic process. Physicians slowly move toward closure of diagnostic possibilities through testing and analysis, and through a ‘rule-out’ mentality, which may lead to a diagnosis. Diagnosis is uncertain. There are no fixed rules in medicine stipulating what counts as sufficient information to make a diagnosis. This overlaps with the uncertainty that characterises our judgements about what others are thinking, feeling, and experiencing.

By its nature, diagnosing illness is about managing indefiniteness: it attempts to reduce the level of diagnostic uncertainty enough to make optimal therapeutic decisions.

Intolerance to diagnostic uncertainty has negative implications in general practice, on patients, and the healthcare system. General practitioners who cope well with uncertainty are more likely to support shared decision-making. By attempting to achieve absolute certainty through a ‘correct diagnosis’, premature closure may occur in the decision-making process, thereby allowing hidden assumptions and unconscious biases to have more weight than they should, with increased potential for diagnostic error.

The indefiniteness of illness does not reflect the inadequacy of our language, but the complexity that characterises human life.