2019 - QUEEN MARY UNIVERSITY OF LONDON
The first edition of OCD in Society: Making Sense of a Hidden Illness was hosted by Elvis Coimbra-Gomes at Queen Mary University of London on 8 June 2019, and was attended by ca. 100 people. Considering the prevalence of quantitative studies researching obsessive-compulsive disorder, the goal of the conference was to provide a platform that highlights qualitative work. As such, the one-day event brought together OCD sufferers, psychotherapists, artists, and charities with scholars from the humanities and social sciences to think about the different ways that OCD is understood in our society: be that through stories by affected people from different backgrounds, fictitious narratives in films and novels, media reports, music, artwork (e.g. paintings, carvings, performances) or different institutions (e.g. academia, charities, mental health services). It is only through an understanding of how meaning about OCD is circulated in and regulated by society that we can find appropriate measures to take social action.
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The event was divided into two parts, each providing a platform to explore different perspectives:
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SOCIAL PERSPECTIVES: We had a roundtable discussing issues surrounding prevention strategies and raising awareness about OCD with Stuart Ralph (The OCD Stories), Olivia Bamber (OCD Action), and Catherine Benfield (OCD Advocate); Psychotherapist Dr Jan van Niekerk presented a workshop about cognitive behavioral therapy and inference-based therapy; and The Secret Illness presented performances and exposing artwork by OCD sufferers throughout the day.
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ACADEMIC PERSPECTIVES: Social scientists who are doing qualitative research on OCD presented their work. Dr Olivia Knapton (King’s College London) gave a keynote lecture on linguistic approaches to OCD narratives followed by five academics who use qualitative approaches to the study of OCD.
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Presenters' biographies and abstracts can be found below. You can also find a recording of the event on Youtube, and a positive review in The Polyphony written by an attendee.
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ACADEMIC SPEAKERS
Dr Olivia Knapton
Olivia Knapton is a Lecturer in Linguistics at King's College London who specialises in qualitative discourse analysis within the field of health. Her research interests lie in investigating subjective experiences of mental health problems, particularly through combining cognitive and narrative approaches to discourse. Olivia has largely focused on researching OCD but has also investigated eating disorders and anxiety problems more generally, and she has interests in the relationships between women’s mental health and the lived experiences of their bodies. Olivia will talk about:
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Subtypes of OCD: Insights from Qualitative Approaches
OCD is a heterogenous disorder comprised of numerous subtypes that can be distinguished based on the nature of the obsessions and compulsions. The vast majority of research into OCD subtypes takes quantitative approaches, tending to delineate subtypes based on statistical analyses of symptom inventories. In this presentation, I argue that these quantitative approaches are often not sensitive enough to pick up on the nuances and individual experiences of living with different OCD subtypes. I present an alternative, qualitative-linguistic approach that analyses narratives of OCD as told by people with OCD, focussing on the ways in which time, space and uncertainty are recounted.
The application of this approach to interview data shows that OCD episodes can be grouped according to a three-way subtype classification that quantitative studies have not discerned: (i) activity episodes, which revolve around everyday tasks; (ii) state episodes, which are concerned with the self and identity; and (iii) object episodes, which are concerned with the effects of objects on the self. In this talk, I discuss the relationship of this three-way classification of OCD episodes to existing cognitive models of OCD and argue for the value of categorizing episodes, rather than people, into subtypes of OCD. Overall, the presentation highlights the importance of researching OCD episodes as dynamic, evolving, and highly subjective experiences.
Hollie Burton
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Hollie graduated from the University of Birmingham with a BSc (Hons) Psychology degree in 2017 where she developed a particular interest in the neurobiology of mental health. After a move towards epidemiology and health sciences she graduated with an MSc in Health Research from the University of Warwick in 2019.
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How Women with Established Obsessive-Compulsive Disorder Experience Pregnancy and the Postpartum Period: an Interpretative Phenomenological Analysis
This paper explores the pregnancy and postpartum experiences of women with "established obsessive compulsive disorder" (eOCD), OCD that began ahead of, and is unrelated to, pregnancy. This qualitative study used the interpretive phenomenological analysis (IPA) approach to describe and to interpret women’s lived experiences from a participant-centric perspective, and to clarify the nature of ‘exacerbation’. Little is currently known about the effect of the perinatal period on women who have eOCD, except that a significant minority of women report that their symptoms are ‘exacerbated’ during pregnancy/postpartum. However previous studies have failed to define ‘exacerbation’ beyond an ‘increase in severity’ and have generally retrospectively asked women in quantitative studies decades after the event.
In 2018 I conducted semi-structured interviews, over Skype, with five women with eOCD who had given birth within the last three years. Diagnosis of eOCD was ascertained by participant self-report; Dimensional Obsessive Compulsive Scale scores were used to triangulate this information. The interview data were analysed using IPA. From the data, four superordinate themes emerged: exacerbation, responsibility, trust and control. The four women who experienced ‘exacerbation’ reported an increase in severity and also a distressing change in ‘content’ or ‘form’ (where ‘content’ is the individualised mental experience and ‘form’ is the common themes that create a codifiable description [Gamble & Brennan 2005]). This was related to a sudden increase in responsibility, feelings of loss of control and isolation. Lack of trust affected support networks and created access barriers to treatment. This expansion on our understanding of ‘exacerbation’ has implications for treatment and potential health outcomes for exacerbated eOCD for women and their babies. It is important that this is further investigated and that strategies are created to identify and support women with eOCD prior to and during the perinatal period.
Hollie published her presentation as an article. You can read it here.
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REFERENCE
Gamble C., and Brennan G. (2005). Working with Serious Mental Illness E-Book: A Manual for Clinical Practice. London: Elsevier Health Sciences.
Elicia Boulton
Elicia is currently completing the last year of her Counselling Psychology Doctorate at the University of the West of England. The focus of her thesis has been to explore the lived experiences of sex and sexuality for women with OCD, using an online qualitative survey. She has also worked for the past nine years in the area of learning disabilities and autism, working both as a qualified counsellor and counselling psychologist in training.
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‘One dead bedroom’: The Impact of Obsessive-Compulsive Disorder (OCD) on Women’s Lived Experience of Sex and Sexuality
OCD is an often misunderstood condition that can impact identity development and relationships, and is thought to affect 2–3% of the population. Women with OCD are sharing stories online about their experiences of sex and sexuality; something captured in the recent Channel 4 comedy drama series Pure. However, there is very little research and no qualitative research to date that has explored the lived experiences of sex and sexuality for these women. This study aims to begin this exploration.
Women’s experiences were gathered using an online qualitative survey. A survey enabled a high level of (felt) anonymity and a degree of control over their participation; this was important given the sensitive nature of the topic. 134 women completed the survey. Data were analysed using experiential thematic analysis, informed by critical feminist sexuality theory.
Five themes were developed: OCD as fake news; OCD as a real bastard; OCD as sex killjoy; What is normal sex; and To share or not to share. Women managed their intrusive thoughts and compulsions around sex and sexuality through avoidance and did not talk about sex and sexuality with their therapist. Women who reported talking about sex with their therapist experienced judgements about their sexuality, sexist advice and well-meant but ultimately unhelpful therapeutic interventions.
Further training is needed around sex and sexuality for therapists working with women with OCD to enable them to talk openly and confidently about sex and to ensure therapeutic approaches are underpinned by feminist and critical sexuality principles.
Elicia based her presentation on her thesis that you can read here.
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Dr Ramesh Perera-Delcourt
Dr Ramesh Perera-Delcourt is a Clinical Psychologist and Cognitive Behavioural Psychotherapist, specialising in the treatment of anxiety disorders, including OCD. He works at the Maudsley Centre for Anxiety Disorders and Trauma with OCD experts such as Dr Fiona Challacombe and Dr Victoria Bream. He has carried out qualitative and experimental research on OCD. His initial interest was prompted by a close personal friend having OCD. He is keen to expand the understanding of the disorder, incorporating missing perspectives and novel interventions, to reduce the effect it has on people. He is currently pursuing funding for research into how digital technology could facilitate OCD treatment; this could also have implications for reducing some of the stigma associated with OCD.
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'Learning to live with OCD is a little mantra I often repeat' – 10 Years On
We conducted one of the first published qualitative pieces on OCD, exploring the experience of it from a non-clinical perspective (Murphy & Perera-Delcourt 2014). We wanted to find out more details about the psychosocial origins, context and impact of OCD beyond the description of the dominant medical model. Part of the aim of this was to understand relatively high levels of treatment drop-out, and how therapy could be improved. We interviewed 9 people who self-identified as having OCD. We used Interpretative Phenomenological Analysis (IPA) to identify themes around “Having obsessive-compulsive disorder”, particularly “Wanting to be normal and fit in”; a feeling of “Failing at life”; and a theme of “Loving and hating OCD”; and around the “Impact of therapy”, specifically “Wanting therapy”, “Finding the roots” (or not) of OCD, and wanting to develop “A better self”. I (RPD) was a psychology student at the time. I have since gone on to train as a Clinical Psychologist specialising in Cognitive Behavioural Therapy for Anxiety Disorders. I would like to use this opportunity to return to the findings 10 years after the research was conducted, and set them in the context of the qualitative research into OCD subsequently conducted. I will also reflect on the findings and the process of carrying out qualitative analysis from the perspective of my older, clinically-qualified self; in particular, how the dominant talking therapy treatment (CBT) does and does not relate to some of the themes. Finally, I shall consider, based on my clinical experience, some questions that further qualitative research on OCD could helpfully answer.
REFERENCES
Murphy, H. and Perera-Delcourt, R. (2014). ‘Learning to live with OCD is a little mantra I often repeat’: Understanding the lived experience of obsessive-compulsive disorder (OCD) in the contemporary therapeutic context. Psychology and Psychotherapy: Theory, Research and Practice 87: 111–125.
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Dr Joanne Edge
Dr. Jo Edge is a historian and OCD sufferer. She obtained her undergraduate and postgraduate degrees from the University of London and afterwards held a postdoctoral position at the University of Cambridge. Her research interests revolve around medieval and early modern medicine and the occult, manuscript studies and digital humanities. She is currently Latin Manuscripts Cataloguer at the John Rylands Library at the University of Manchester.
Obsessive-Compulsive Disorder and Retrospective Diagnosis: A Historian with OCD’s Perspective
Since nineteenth-century psychologists attempted to replace the ‘irrational’ with the ‘rational’, all sorts of historical figures and groups have been labelled with modern diagnoses: Newton was autistic, George III had porphyria, Joan of Arc was schizophrenic. From the 1980s onwards this kind of approach has fallen out of fashion with historians of medicine, who prefer to see historical subjects in their own contexts: how did people in past societies describe and treat mental disturbance? Psychiatrists today do not even diagnose living subjects they have not examined in person. Section 7 of the American Psychiatric Association’s Principles of Medical Ethics, nicknamed the Goldwater Rule, is quite clear on this.
This paper will point out the fundamental flaws in using written narratives to diagnose past people with OCD using the case studies of Martin Luther (1483-1546), John Bunyan (1628-88), Samuel Johnson (1709-84), and Charles Darwin (1809-82), all of whom have been at some point labelled with this disorder. Firstly, there is no way to gather physical evidence from bones for modern mental disorders. Secondly, if modern categories – the DSM – aren’t static, how can they be applied retrospectively? Thirdly, people in the distant past inhabited quite different mental worlds to ours. What we see as mental illness might have been a way to prove sanctity; demonic possession; a superfluity of humours; or something else. Madness did not always equal illness like it does today. And fourthly, because much of the written evidence we have about past figures was not autobiographical, we don’t know how they actually felt. This is crucial in modern diagnosis – a dialogue between doctor and patient which records how the patient thinks and feels. So it is ahistorical to place modern disease categories on past people: what we can identify with, however, is suffering.
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Matthew Hiller
Matt Hiller is a first-year doctoral student in the joint anthropology and social work program at the University of Michigan. In his doctoral research, he plans to conduct an ethnographic study of OCD treatment in southern India. He has also conducted research on narratives about sexuality and selfhood in OCD internet communities and is currently assisting with a study on stigma and treatment-seeking behaviors among individuals experiencing intrusive thoughts. Prior to attending his doctoral program, he received a master's degree in social service administration from the University of Chicago and completed clinical training in the Mood and Anxiety Disorders Clinic at the University of Illinois at Chicago. He also received additional clinical training through the Chicago Center for Psychoanalysis and provided individual psychotherapy for adults and children in community mental health and private practice settings.
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Multiplicity and Meaning: Examining the Ontology of OCD
This paper draws on work from Annemarie Mol (2002) and Bruno Latour (2007) to consider the ontology of OCD. In doing so, it seeks to break with accounts that frame the condition as a transhistorical and transcultural “brain disorder.” However, the paper also challenges accounts that consider OCD solely as a discursive construct or means of medicalizing non-normative behavior. Instead, it explores OCD as an assemblage that links diverse phenomena such as brain scans, personal narratives, bodily sensations, psychological assessment tools, and diagnostic criteria. This paper argues that approaching OCD as an assemblage creates space to consider links between materialist and social constructivist accounts of the condition. Furthermore, it argues that this approach offers an opportunity to view the condition beyond notions of pathology and examine how experiences of OCD can contribute to new understandings of agency and subjectivity.
REFERENCE
Latour, B. (2007). Reassembling the Social: An Introduction to Actor-Network-Theory. Oxford: Oxford University Press.
Mol, A. (2002). The Body Multiple: Ontology in Medical Practice. Durham and London: Duke University Press.
WORKSHOP
Applying Cognitive-Behavioral Therapy & Inference-Based Therapy to OCD
Dr Jan Van Niekerk
Jan van Niekerk, PhD, is a registered clinical psychologist practicing in Cambridge, United Kingdom. He is an associate at the Cambridge Clinical Research Centre for Affective Disorders and author of Coping with Obsessive-Compulsive Disorder (2009) and A Clinician's Guide to Treating OCD (2018).
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Jan provided a one-hour workshop on how to apply cognitive-behavioral therapy and inference-based therapy to OCD. Unfortunately, due to the privacy of the examples he used, this workshop was not recorded.
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Website: http://www.camclinic.net/
ROUNDTABLE:
OCD Prevention, Raising Awareness, and Negotiating Identity
Olivia Bamber
Olivia works for OCD Action, a national charity supporting anyone affected by Obsessive Compulsive Disorder (OCD), Body Dysmorphic Disorder (BDD) and related conditions. They provide a range of support services including a Helpline, Advocacy Service, Youth Service and a network of local independent support groups and Skype/phone support groups, as well this they campaigning nationally to improve things for the lives of those affected by OCD. Olivia is the Youth Service and Communications Manager at OCD Action. She started working at the charity over 5 years ago after battling OCD for over 15 years. She is passionate about raising awareness of this condition and part of her role at OCD Action is to work with the media to improve people’s understanding of OCD.
Stuart Ralph
Stuart is the founder of The OCD Stories podcast. A weekly show where he interviews some of the best minds in OCD recovery. He runs an annual OCD camp in the UK. In 2018, he won the International OCD Foundation hero award. He is a trained integrative counselor and psychotherapist for children and young people at the University of Roehampton, England. He holds a masters degree in mental health from Queen Mary, University of London.
Catherine Benfield
Qualified teacher Catherine Benfield has experienced OCD since early childhood. It had a particular impact on her after having her son in 2012 and although now well on the road to recovery, Catherine campaigns for a better understanding of OCD and better services for those affected by it. She is the founder of Taming Olivia - a website aimed at recovery using the tools of compassion and creativity, and is a volunteer for the Maternal OCD charity.
Richard Taylor
Richard is a writer, mental health advocate and campaigner who has featured in award winning documentaries, numerous radio shows and is published in the Guardian and Telegraph. He uses his life experiences to talk about mental health and give others hope, especially around the subjects of OCD, depression, male mental health, suicide and relationships between parents and children.
THE SECRET ILLNESS:
OCD Through Creative Arts
Liz Smith
Liz Smith is primarily a filmmaker but she also works across other mediums including podcasting, digital media and live events. Her work explores the human mind and societal issues.
She is currently making a feature documentary, Swipe Left For Addiction, exploring the impact that tech is having on teenagers. She is the co-founder and creative director of The Secret Illness, a creative arts project that explores what it is like to live with Obsessive Compulsive Disorder, and she devises and hosts What’s Going On In Your Head?, a series of events that explore the secret inner workings of the mind through live performance and discussion.
Website: www.liz-smith.com
Twitter: @smith_liz
Becca Laidler
Following 12 years working as an actor and presenter in London, Becca Laidler stepped behind the camera into a variety of operational and project management roles within film production and media companies. Since 2017 she has been working with Total Media in Soho, London.
Becca’s mother has lived with OCD for the majority of her life but was only diagnosed and started receiving help at the age of 50. Becca co-founded The Secret Illness in 2015 with filmmaker Liz Smith. They have been working with an amazing global volunteer team, as they explore the creative arts in order to lift the lid on this secret illness.
The project now has over 150 posts from around the world on "The Wall", as well as creative collaboration in "The Gallery", "The Cinema" and "The Salon". Since 2018, The Secret Illness has been bringing its online platforms into the real world with live events and exhibitions.
Stephanie Coen
Stephanie Coen has been a volunteer collaborator on The Secret Illness project since 2015 and has found creative collaboration and advocacy to be an important part of her OCD recovery. When she's not tweeting about OCD and mental health, Stephanie is an Assistant Professor in the School of Geography at the University of Nottingham.
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Twitter: @steph_coen
Martha Lamont
Over the last few years, Martha began to direct the subject of her work around mental health, specifically her experience with anxiety and OCD. The content of her art is an attempt to visually storytell her own and others struggles, in a way that would otherwise be challenging to convey through words. The repetitive use of the character she draws, represents the relentless nature of intrusive thoughts in relation to OCD. The character resembles the human figure, but is distorted by the absurdity of anxiety. Martha also enjoys drawing happy memories for people and doing commissioned continuous line drawings to balance her practice.
Website: www.marthalamont.com
Instagram: @marthalamontart
Jonathan Tilley
Jonathan Tilley is forty six years old and has suffered from OCD for as long as he can remember. He was diagnosed with OCD at the age of thirty five and five years later started carving wood. The creative process serves as a great distraction from OCD and provides a channel for Jonathan to express himself. Jonathan's poetry gives an insight to his personal experience of OCD and also help explain some of the thinking behind his carvings. Jonathan shares his work on 'Chipping away at OCD' on Facebook and Instagram, and has showcased his artwork at a previous event organised by The Secret Illness at the hClub in London.