In The Sleeping Beauties, neurologist Suzanne O’Sullivan describes a fascinating, but rare phenomenon which she is perhaps best described as Mass Psychogenic Illness in which many people from a group with shared social experiences experience similar Functional Neurological symptoms at the same time. Lay, media and medical explanations come into conflict, in particular when doctors with vested interests get involved. In spite of how uncommon MPI is, functional neurological symptoms are among the commonest problems that patients present with to GPs and neurologists and there are some lessons, some questions and some problems raised by her account.
The broad spectrum of Functional Neurological Disorders (FND) ranging from dissociative disorders like depersonalisation and derealisation to non-epileptic seizures and the overlap with conditions like POTS, IBS, chronic fatigue, chronic pain and mood disorders, inflammatory and autoimmune disorders makes diagnosis difficult and it is frequently delayed or never made. O’Sullivan includes a case of a young woman who has this constellation of problems, the only non-MPI case in the book and one that she found particularly challenging since she was her doctor, unlike the MPI cases she investigated as a journalist. The hardest part about looking after patients with FND is the relationships between the patients and the doctors. This case will be familiar to most GPs and neurologists and in it lies the most important lesson: key to a good outcome is a therapeutic alliance in which there is sufficient shared understanding and trust for a basis on which healing can occur. Given the healing role of the community which might include a multidisciplinary team, family, friends, teachers, social workers, employers etc. sufficient shared understanding can be impossible to achieve, and the prognosis for FND can be very poor, especially in our modern, fragmented, individualistic society. And as she notes, but could have emphasised more, doctors hold most of the power, responsibility and blame for creating conflict by imposing their own ideas – what Fricker and Cavel call Epistemic Injustice – the imposition of a medical interpretation and refusal to respect any other. The confidence in Western Medicine’s ability to provide a cure for all ills, or our tendency to dismiss things as ‘untreatable’ or ‘treatment resistant’ is another symptom of our arrogance. It’s interesting by contrast that she discovers that shamanic treatments are ‘largely successful’ among the Nicaraguan patients she visits which suggests that a community approach to the understanding and healing of these kinds of disorders could point towards what ails us as a society and that Western Medicine is only one type of medicine among others and progress might require us to look at other traditions. It also points to the power and politics within Western medicine: we use the term biopsychosocial which implies a hierarchy in which the BIO overshadows the psychological and the social is the final consideration. It is also conceived as additive – Bio+psycho+social rather than ecological – an imbalance between constantly interacting parts of a biome which includes safety, security, human relationships, relationships with the natural world, clean air, nutritious food, healthy amounts of acute inflammation from regular exercise and more. The widening gaps between healthcare professionals and their patients due to specialisation and the collapse of relational continuity means we are less able than ever before to integrate historical and social perspectives.
Unfortunately we’re in a situation of catastrophic climate change, the collapse of biodiversity, alienation from the natural world, the Covid pandemic, worsening pollution, rising inequity, highly processed foods, rigid and competitive education systems and neoliberal corporate capitalism, so it is very hard to be well and it’s no surprise that the numbers of patients presenting with FNS and all the associated autoimmune/ inflammatory disorders are on the rise and doctors are overwhelmed.
On a final note, O’Sullivan is at pains to emphasise that MPI/ FNDisorders are NOT caused by trauma and on this I fundamentally disagree. Firstly FND may in some bars be the presenting symptoms of present and ongoing abuse, just as women who are being abused are more likely to come to tell their GP about pelvic pain than the violence they’re experiencing. I can see why she is at pains to do play down trauma almost too three point of dismissal because when asked about ACEs (Adverse Childhood Experiences) many people with MPI/FND will say that they didn’t have any. And also the experience of many people is that admitting to a history of Trauma leads to their problems being dismissed as psychological or even worse they are labelled as having a ‘personality disorder’ at which point they are repeatedly re-traumatised by medical systems and professionals. Bringing up ACEs risks parents or others being blamed and may lead to huge disruption to families. Trauma, especially in MPI occurs to communities, and Joy DeGruy had written about Post-traumatic Slave Syndrome. My experience is different from O’Sullivans because I’ve been in the same practice with high levels of continuity of care for over 20 years so my view is ecological – I see historical, intergenerational, cultural, community, environmental factors interacting and I see constellations of symptoms and diagnostic labels come and go – my patient encounters may be ultra-brief, but over decades they become ultra-long. I am also learning how to provide presence – a safe, holding space where we can acknowledge trauma – which often stems form never having been held in a safe space – not just the experience of abuse. Providing presence and a safe space means the doctor getting their ego, interpretations, ideas, assumptions, emotions and other baggage out of the way, being attuned to neuroception (recognising how their nervous system responds to the presence of another) and being open to the experience of being attuned and affiliated however painful that may be. And while I know many people who can do this naturally, we are a very long way from teaching or promoting it in Western Medicine. But very often we don’t know what happened and we should not go digging, after all, trauma – as Gabor Mate explains it, “is not what happens to your body, it’s what happens inside your body”
A Better NHS 