Eva Surawy Stepney reports on conference ‘OCD in Society: Making Sense of a Hidden Illness’, Queen Mary, University of London, Saturday June 8th 2019.
What is the relationship between Obsessive-Compulsive Disorder (OCD) and Western society? Can we read this ‘disorder’ into the past? How should we treat it? What even is it? These are some of the questions explored at the conference ‘OCD in Society: Making Sense of a Hidden Illness’ held at Queen Mary, University of London on Saturday June 8th 2019. The conference offered a space for both academics (linguists, clinical psychologists, and historians) and activists (including members from OCD Action and The Secret Illness) to share their insights into the field. The result was an entanglement of ideas and experiences which, in complicating commonly held notions regarding this highly misunderstood ‘illness’, moved some way to demystifying it.
One of the central aims of the conference was to exhibit how qualitative approaches to OCD can both problematize and expand on existing quantitative data. This was explicitly addressed by the key note speaker, Dr. Olivia Knapton (Kings College London) who argued the case for placing linguistic analysis (rather than predefined questionnaires) at the heart of OCD research. Based on the premise that language offers a valuable window into cognitive experience, Knapton identified spatial and temporal markers in service-user narratives in order to formulate three OCD subtypes:
- Activity episodes (obsessions grounded in specific locations and involving an interaction with the external world).
- State episodes (obsessions tied to an individual’s sense of self, which transcend spatial locations).
- Object episodes (obsessions triggered by the external world, but subsequently transferred both internally and on to the wider environment).
Through this formula, Knapton not only complicated the prevailing Autogenous Reactive Model (based on an internal/external binary of obsessions), but highlighted the utility of individual narratives in conceptualizing nuanced clinical models. Sufferers, she argued, experience a number of OCD sub-types at different moments in time, and it is their voices which offer the most valuable insight into this highly dynamic illness.
The focus on narrative-led research continued throughout the day with Dr. Ramesh Perera-Delcourt utilizing service-user voices in a presentation on OCD within the Cognitive Behavioural Therapy (CBT) model. In order to assess the value of this therapeutic formula, Ramesh situated a qualitative study he had conducted in 2014 (based on nine interviewees) in the context of his more contemporary work as a CBT clinician at the Maudsley. In response to a central tension that emerged in his earlier findings- the discrepancy between service-users who sought to know the root of their illness, and others who favoured a more symptom-based treatment- Ramesh suggested placing the individual patient’s needs at the heart of the therapeutic process.
The ability of a patient to narrate their past experience strikes at the core of contemporary debates concerning the benefits and limitations of CBT, and this point engendered a lively audience discussion; a number of participants defended the treatment (many asserting it was life-saving), whilst others argued that the approach did not go far enough in identifying OCD symptoms as a coping mechanism for early trauma. Whatever the method, it was generally agreed that there needs to be greater priority in ensuring equity and accessibility to a range of treatments within the NHS. In the spirit of Nikolas Rose, I proposed that psychologists should adopt the role of public health professionals, prioritising policy proposals alongside their clinical research.
To ensure that attendees and speakers did not become solely engrossed in the world of ideas, the academic presentations were interspersed with breaks in which one could view the sculptures and poems of artist and OCD sufferer John Tilley. Having been diagnosed with OCD at the age of thirty-five, but suffered symptoms for as long as he can remember, Tilley turned to wood carving in an attempt to translate some of the more disturbing aspects of the illness into a creative form. His beautiful depictions of clenched faces and frazzled minds certainly offered an insight into the painful and consuming state that accompanies the repetitive cycle of OCD. If anyone was distracted from the conference’s central purpose, to explore a disorder that affects up to 3% of the population, Tilley’s harrowing work served as an apt reminder.
The impact of gender and sexuality on both the content of OCD thoughts, and the lived experience of the illness, played a central role in discussions throughout the day. These themes were addressed most explicitly by self identified OCD sufferers Holly Burton (who holds an MSc in Health Research) and Elicia Boulton (a trainee counselling psychologist). In a thoughtful and self-reflective approach, the former drew attention to the ‘exacerbation’ (this loaded term was deconstructed) of harm-related intrusive thoughts among women with established OCD (eOCD) in the post-partum period. The latter offered insight into the daily-negotiations of those with sex-related obsessions and/or compulsions. In these sensitive and important studies, expectations regarding what constituted ‘normal’ behaviour (in relation to sex and motherhood) were key factors in aggravating women’s experiences of OCD, and limiting their chances of seeking constructive help. This was particularly apparent in Boulton’s study where participants who were undergoing therapy were rarely asked about thoughts/experiences relating to sex. In some cases, when the topic was addressed, inappropriate and ethically dubious advice was given. Both speakers were admirably forthright in their appeal for therapists to be adequately trained in the ways in which OCD interacts with experiences such as pregnancy and sex; it is only through the reading of feminist literature, argued Boulton, that clinicians can provide sensitive, ethical, and non-judgemental treatment.
Expanding on the notion that experiences of OCD vary in relation to constructed norms, a number of speakers focussed on the historically contingent nature of the ‘disorder’. Dr. Joe Edge covered the well-established problem of retrospective diagnosis, reiterating the point familiar to historians of psychiatry: whilst we can identify with features of historical experience (e.g. suffering), it is anachronistic (and frankly uninteresting) to project contemporary labels on to the past. The latter point was further unpicked by cultural anthropologist Max Hiller who, referencing Anne-Marie Mol’s exceptional work Body Multiple, suggested that OCD not only has multiple names across history, but multiple ontologies. Hiller illustrated this point via the example of online communities (in which the category of porn-induced OCD is becoming widely accepted), and the shift from Freud’s Obsessional Neurosis to a mechanistic model of mind in the mid twentieth-century. The argument goes: when new categories come into existence, they in turn shape people’s identity and experience of illness, which serves to reinforce/modify the available diagnostic criteria (Ian Hacking’s ‘looping effect’). The most enlightening aspect of Hiller’s discussion was the parallel drawn between the inherently unstable meaning of OCD and the level of uncertainty sufferers of the disorder face: if we can question the multiple ontologies of Obsessive-Compulsive disorder, surely we can question what the diagnosis means about ourselves?
The final part of the conference was appropriately given to OCD activists and campaigners. A panel discussion, chaired by the organiser of the event Elvis Coimbra Gomes, engaged Olivia Bamber (OCD Action), Stuart Ralph (The OCD Stories), and Catherine Benfield in a valuable conversation regarding the importance of activism in challenging the cultural tropes of OCD. This was followed by a presentation from the creative arts organisation The Secret Illness, who offered a generous insight into some of their work: poems, podcasts, and the gut-wrenching paintings of Martha Lamont who, like Tilley, has mapped her external experience onto the external world (through art), indicated that despite its associated suffering, OCD can produce extraordinarily beautiful results.
Through its exploration of the links between OCD experience and narrative, this conference created an intellectually challenging space that not only joined service-users, activists, and academics in collaborative conversation, but emphasised that these positions need not be so distinct. The number of academics who they themselves were sufferers (and activists) presented a convincing case for comprehensive research driven by personal experience. Whilst there is still a long way to go in exposing the misunderstandings of this complex ‘disorder’, and further attention must be paid to the relationship between societal standards and thought-content, this conference offered a remarkable starting point.
Eva Surawy Stepney is an MA student studying the History of Medicine at Birkbeck, University of London. She has lived experience with OCD and has written accounts for Rethink Mental Illness.