LAUSR

Suzanne O’Sullivan, a practising neurologist, in her first book It’s All In Your Head (2016), explored some mysteries of psychosomatic disorders based on individual patients’ accounts. In The Sleeping Beauties, she describes how cultural and social factors determine the presentations of functional neurological disorders (FND) in different communities and cultures, in locations including Sweden and the Amazon. Those in our group who had read her previous work appreciated the evolution of her writing towards a distinctive authorial style and voice. From the start, she makes clear her reservations about the term FND, prompting a long group discussion about the term, and in particular about how well it reflects the patient experience and the extent of shared understanding between them and their healthcare professionals. Given the heterogeneity of clinical presentations, is the term too general? Does it ensure a shared understanding of how FND occurs that takes account of the biological, psychosocial and cultural past of the patient and the particular features leading to a period of illness? In routine practice, clinicians may feel confident to confirm that there is no underlying disease—at a cellular level—but be less confident about the exact provenance of an individual’s situation. We considered how we explain FND to patients and how difficult it is when we lack a deeper insight into their predicament and beliefs; but this should not stop us validating a patient’s experiences to gain trust, in turn allowing us to explore the reasons that underlie their presentation. O’Sullivan skilfully draws on analogies to unravel how FND symptoms emerge, creating a scaffold within which to build our own understanding. She disputes the widely held belief that FND invariably stems from trauma, challenging her audience to consider other explanations, such as societal and domestic pressures that are outside of the person’s control and that can lead—perhaps years later and in a different situation— to abnormal physical responses to seemingly routine stress. Supporting patients in the way they address and understand their symptoms may be more useful than searching for a single egregious event, or a sequence of discrete events, in the past. O’Sullivan gained firsthand experience of the context of illness by visiting the afflicted in their own homes and communities. Most of us see our patients in clinics and wards and rely on often unrepresentative and brief encounters far removed from the pressures that may drive illness behaviours. We reflected on the role of investigation in FND. Physicians may fear missing organic disease and so overinvestigate, often against their better judgement. With so many results to factor into our conclusions, this medical hypervigilance can— based on results that may be only slightly outside the normal range— easily lead to a mislabelling of organic disease. We concluded that clinicians’ better training and education would reduce such over investigation. The Sleeping Beauties provides useful tips for consultations. ‘Is this real?’ is probably not a helpful question. Instead, we need to understand—perhaps even feel—just how real the problem is to the patient. An important part of the clinical assessment should be to explore societal and cultural environments to understand better their influences on people’s past and present lives. In a similar vein, clinicians should not stop taking the history after a first consultation but instead continue looking for cues that suggest improved rapport and trust, and then explore in more detail the social and cultural determinants of symptoms. Finally, a clinician’s reaction—words, gesture and behaviour—may potentiate a patient’s feelings about their symptoms and lead to more investigation and medicalisation rather than less; at the very least we must ensure that our consultations do not aggravate FND problems, or compromise patients’ chances of therapeutic consultations with other healthcare professionals. The Sleeping Beauties was a thoroughly enjoyable read and provoked interesting and insightful discussion at our book club. Joel Mock, Paulina Suszczynska, Tom A T Hughes Neurology, University Hospital of Wales Healthcare NHS Trust, Cardiff, UK