‘Misdiagnosing the unexplained’ | Letter to ‘The Psychologist’ | April 2014

March 28, 2014

The ‘The Psychologist', April 2014 (Letter by Joan Crawford, chairperson of Chester ME Self-Help Group).

Richard Brown’s article (‘Explaining the unexplained’, December 2013) relates some current thinking about medically unexplained conditions (MUS); however, there are areas that were not explored in sufficient depth. This is important as they underpin Brown’s stance towards MUS especially those involving contested conditions such as myalgic encephalomyelitis and fibromyalgia, where patients’ experiences can collide with medical and psychological opinion.

Brown’s assertion that misdiagnosis is rare requires challenge. As the Chair of a UK-based myalgic encephalomyelitis self-help group with 260 members in the North West of England, I have been made aware of at least 18 different misdiagnoses in 12 different patients recently.

I wonder how many more patients are misdiagnosed with treatable, identifiable pathology. Furthermore, there appears to be a pattern of circular thinking around the concept of ‘rarity’. If a condition is perceived as rare the patient is presumed that they can’t or probably don’t have it, so they are not checked for it, thus the patient is not diagnosed with it, so the condition remains understood to be rare and remains underdiagnosed. And so it goes on. This raises the issue of who gets to decide which patients receive the screening for the so-called rare disorders? The power to act does not reside with the patient, who is essentially powerless. On occasion this can be overcome, if they have sufficient support, by determination and a deep well of financial resources.

I suspect it can be tempting for a medical practitioner when they run out of coherent ideas and fail to find evidence to rectify patients’ symptoms with medical diagnosis to push the responsibility back towards the patient by psychologising their symptoms (Goudsmit, 2002). This process probably helps to preserve medical authority and control; protecting professionals in the short term from uncomfortable emotions.

Patients can be given the impression, consciously or otherwise, that their symptoms and suffering are not of worth; that they are derived from within themselves via a self-generated, autopoietic mechanism (Deary et al., 2007), which they have the power to overcome. This self-blaming and shaming approach can silence patients discouraging them from further medical interaction and, I would suggest also, additional emotional and social support. Together it is clear that this can have tragic consequences for patients and their families.

I would urge anyone working with patients to take time to reflect on the impact of undermining the validity of patients’ experiences via psychologisation and to explore more meaningful aspects of patients’ distress, which may in the longer term reap greater benefit.

Joan Crawford
Chair – Chester MESH
Trainee counselling psychologist

Deary, V., Chalder, T & Sharpe, M. (2007). The cognitive behavioural model of medically unexplained symptoms. Clinical Psychology Review, 27, 781–797.
Goudsmit, E.M. (2002). The psychologisation of illness. In J. Brostoff & S.J. Challacombe (Eds.) Food allergy and intolerance (pp.685–693). London: W.B. Saunders & Co.

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