University of Amsterdam (UvA) Graduate School of Social Sciences Master’s in Medical Anthropology and Sociology Student: J. Blignaut Student number: 11046597 Supervisor: Prof. Joop de Jong, MD, PhD Second reader: Dr René Gerrets, PhD
Being with OCD in South Africa
Master’s Thesis 24 December 2017
Note: In this thesis the use of OCD refers to obsessive-compulsive disorder. I prefer to think of it as an acronym for obsessive-compulsive distress and I encourage you to read it in this way. As a simplified (but inadequate) starting description: OCD consists of repeated intrusive thoughts which cause distress and repeated compulsive behaviours in response to this distress. Furthermore, I have never been comfortable with the phrases ‘suffers of OCD’ or ‘OCD-sufferers’. While OCD is both pain and suffering, I will use alternative phrases instead, including the phrase ‘OCD-experiencers’.
Table of contents
1. A beginning ... 1
2. A plan of action ... 2
3. Situating this research ... 5
3.1. South Africa ... 5
3.2. Research aims in flux ... 8
3.3. Theoretical inspirations ... 11
3.3.1. Final research questions ... 13
4. Conceptualising OCD ... 14
4.1. Current definitions ... 14
4.2. Past to present ... 18
5. Methods and such ... 27
6. Data and analysis... .32
6.1. Introductions ... 32
6.2. Multiples ... 41
6.3. The treatment landscape ... 42
6.4. Searching ... 44
7. Politics and society [conclusion] ... 55
Acknowledgements and thanks ... 57
References ... 58
Chapter 1
A beginning
You know how people say, “If I had to do it again I’d do things differently.” Not me. If I had to do it again, I wouldn’t do it at all. I’d turn in the opposite direction and just keep on walking away. In fact, I’d run. Although, given my current levels of fitness, I probably couldn’t run. Yes, I’d have to walk. But it would be a brisk walk. Me and my little dog, Maya, we’d walk into the Johannesburg sunset, and I’d write that we were never seen nor heard from again, but that we lived happily ever after. A brisk walk into the safety of obscurity with a happy ending, that’s the story I’d like to be telling right now. But I went ahead and now I have a far more complex story to tell, and I’m not sure how to go about telling it. It’s not even one story, it’s so many. Perhaps I should start at
a beginning. It wouldn’t be the beginning, mind you. I’m learning in my
middle-age, much to my frustration, that beginnings can be as hard to discern as endings. Endings are never self-evident for those of us who live with OCD – constantly in search of an elusive stopping point. So, I’ll start with a beginning and hope, that while it may not be the whole truth, it will be true enough.
I was at university, it was winter in Amsterdam, and it was cold. Everything was so cold and I missed home with a fierce longing that surprised me. Nothing seemed to fit, including me. So, I dusted off an idea from when I’d studied in the past. I would do my research on OCD, I would do it in South Africa, I would be home. I expected it to be hard and to be personal but I didn’t expect it to be quite so hard and quite so personal. I didn’t expect to be writing about my OCD, at least not in this thesis in this way. But it seems necessary that you know this about me, in order to understand some of the context and choices I have made as an often awkward and reluctant researcher. But I really don’t want this to be all about me, so I’m asking a favour, put me aside and promise you’ll turn instead to the stories I have to tell. In honour of those generous enough to share their worlds and those whose kindness has helped along the way, I hope I tell them well.
Chapter 2
A plan of action
The mailman on the doorstep, says, let it flow girl
Moving on direction, and let it flow girl
….
Street angel on the doorstep, says, let it flow girl
Travel with discretion, and let it flow girl
(Band: Freshlyground, Song: Would you mind, 2010)
Several themes run through this thesis. One, is the multi-faceted and complex reality of OCD. Another, is about the search for a path to navigate this complexity. Other themes are important too. But, these particular two require exploration of some of the questions I have struggled with as a researcher – and the approaches I decided to adopt in response – before being able to move onto the body of the thesis.
The first set of questions relates to disciplinary boundaries. During this research process I have pondered about what distinguishes anthropology, sociology, psychology, and the medical from one another. My educational background is in psychology and I am new to the disciplines of anthropology and sociology. I have a personal inclination toward psychological theories that might be said to fit within the umbrella term of ‘cognitive-behaviourism’ as a way to make sense of things. What makes a thesis sufficiently anthropological or sociological? My solution has been to stop trying to do so. For those who live with significant obsessions and compulsions, psychology and medicine (through psychiatry) both represent means by which many of us will seek help for these painful experiences. It is therefore natural that we be interested in these fields and that there be value in including them in any anthropological or sociological discussions of OCD.1
The next set of questions relate to issues of criticism. In this thesis I am critical of the disciplines of psychology and psychiatry, and the state of their research and treatments. It is not my intention to suggest they have no worth. I believe in the rights of all to have access to any evidence-based treatments
1 Also, if we are ever to hope of truly applying multi-disciplinary approaches to address varieties of distress, then the
available in these fields, if that is their wish. Were you to stand here before me now and tell me you are troubled by obsessions and compulsions; my first reaction would be to place my hand on my chest; to try and hold my heart. My next reactions would include encouraging you to try to find a trained cognitive behaviour-therapist and (or) psychiatrist specialising in the treatment of OCD2. And also, to urge you to consider joining a support group.3
A further consideration, within the issue of criticism, is the individuals who work within these fields. In my search for participants I have interacted with several mental health professionals and researchers; as well as a nationwide mental health support and advocacy group. They shared with me their time, knowledge and resources. Without their input, this research would not have been possible. It is not my intention that critique of wider systems and structures be confused as criticism of specific individuals, groups or organisations working within these systems. It also not my intention to suggest that any information shared which I use for critical purposes reflects the intentions of the source of that information. Any errors in analysis, connections made, understanding, and (or) facts remain mine alone.
The final set of questions relates to the use of autoethnography. Ellis, Adams and Bochner describe autoethnography as “an approach to research that seeks to describe and systematically analyse (graphy) personal experience (auto) in order to understand cultural experience (ethno)….As a method, autoethnography combines characteristics of autobiography and ethnography” (2011, pp. 273, 275). This thesis is neither autobiographical nor autoethnographic in the fullest sense. I do not wish for things to be all about me. I intend for it to be collection of stories of OCD.
This thesis draws from certain formats or styles that can be said to fall within the autoethnographic tradition, these being: narrative ethnography, reflexivity and reflexive ethnography, layered accounts, and personal narrative (Ellis, Adams, & Bochner, 2011). I asked you, at the opening of this thesis, to put me aside, and focus instead on the stories I have to tell. But you need to evaluate me as a researcher in terms of this research. I believe choosing this approach is the best way to allow you to do so.
Now to move to an overview of the structure of this thesis. The next chapter, Chapter 3, explores the geography of this research; as well as my experiences with its shifting objectives. It further considers
2 Obsessive thinking and compulsive behaviours do not only occur in OCD. Also, it is theoretically possible to experience
obsessions without compulsions, or compulsions without obsessions, and receive a psychiatric diagnosis of OCD.
3 While this would be my advice, research (including my own) reveals that appropriately trained OCD professionals are
often, at best, challenging to access, and at worst, impossible to access (and financially afford). Also, my ordering by placing support groups after mental health professionals is not meant to reflect a ranking. It is often through the membership of support groups that individuals are able to find access to appropriate professionals. And support groups have value in and of their own, as places to find recognition and sustenance. Support groups may also be challenging or impossible to access (both local and online) or have varied capacities re referrals. I return to the issue of access to treatment and support further on in Chapter 6 (data and analysis).
the anthropological and (or) sociological theories from which this thesis draws inspiration; and arrives at the final formulation of the central research questions guiding this thesis.
Chapter 4 explores the various ways in which OCD has been conceptualised over time, including its current definition as a mental health condition. It functions as a literature review of sorts; though the focus is on literature drawn from ‘Western’ psychology and medicine (via psychiatry and neuroscience), rather than anthropology or sociology. The purpose of this section is to give a sense of the complexity of conceptualising OCD in these fields, including areas of general agreement and contestation. But it is also more than simply a literature review. It is a fundamental part of contextualising the further (South African) data and analysis that occurs in Chapter 6.
Chapter 5 provides an overview of the research methodology. But it confines itself to the direct methods (such as interviews and questionnaires) used with participants. It does not consider the challenges experienced in finding participants and the methods used in this regard. These are left for exploration as part of the next chapter.
Chapter 6 consists of the (South African) data and analysis, divided into four sections. The first three sections, Introductions, Multiples and The treatment landscape, focus on the participants and their experiences of living with obsessions and (or) compulsions, and accessing treatment and support. In the fourth section, Searching, I give a description of the challenges experienced in finding participants and explore what is known regarding the local prevalence of OCD. I also use insights from the preceding chapters and analyses to provide a window into an exploration of possible future directions for improving epidemiological knowledge, treatment and awareness of OCD in South Africa. Chapter 7 contains the conclusion.
Chapter 3
Situating this research
3.1. South AfricaI love Africa in general – South Africa and West Africa, they are both great countries. (Paris Hilton, in Jarski, 2008, p. 394)
On 27 April 1994, South Africans went in our numbers to vote in our first national democratic election after 46 years of apartheid government. Apartheid was a system of institutionalized racial separation implemented while the National Party was in power (BBC News, 2016). Before this, South Africa experienced 296 years of unofficial and official colonization by the Dutch, their South African descendants, and the British, starting with the arrival of Jan van Riebeeck4 in the Cape in 1652 (BBC News, 2016). “South Africa’s history is permeated with discrimination based on race and gender” (Coovadia, Jewkes, Barron, Sanders, & McIntyre, 2009, p. 817). During apartheid people were divided into four basic ‘racial types’: black, coloured (people of supposedly ‘mixed race’), white and Asian (Bowker & Star, 1999). These classifications had an impact on all areas of life. They determined where one could live, who one could marry, where and what type of work one could do, access to healthcare and legal justice, and the right to vote.
These classifications were based on appearance, associations and lifestyle rather than any scientific evidence of racial, ethnic or cultural similarity (Bowker & Star, 1999; Posel, 2001). Within each of these ‘racial’ groups, significant differences in ‘ethnicity’ (culture, language, history and (or) geographical-descent) exist/ed. Twenty-three years after democracy, South Africa continues to experience wide-ranging income- and health-inequalities (Coovadia et al, 2009). In 2005, the Gini coefficient stood at 0.73, with the richest 10% accounting for 51% of income received and the poorest 10% for 0.2% (Stats SA, in Coovadia et al., 2009). And these income differentials between rich and poor reflect apartheid racial classifications. South Africa currently has nine provinces. Within each province, differences exist in the number of urban versus rural sites. And within in each urban or rural area, health inequalities exist, as well as between these sites – also reflecting the unequal distribution of resources and rights in the past (Coovadia et al., 2009). South Africa is classified as an upper middle-income country by the World Bank. But to a large degree, it is a middle created by the averaging of extremes.South Africa is one country but many worlds.
These inequalities, arising out of our history, are partly reinforced by our current government dispensation. Despite significant gains since 1994, serious problems (over the last decade) regarding government corruption and state capture5 are eroding these gains. There seems to be a troubling tendency for some to respond to this situation from one of two polarising perspectives: the past was bad
but the present is worse – versus – the present is bad but the past was worse. Neither perspective helps
us to understand the links between the past and present, in order to work towards a more humane future. (It is beyond the scope of this thesis to go into this in any more detail. Follow this footnote should you wish to further explore this issue.6)
For census and other statistical purposes, South Africa continues to use four population groupings. These are now officially: black African, coloured, Indian/Asian and white – and these groupings will be used in this thesis. Some astutely point out that the continued use of such terms serves to socially reproduce these disastrous categories (Erwin, 2012). Others argue, without using these population categories in South Africa, it is not possible to measure the degree to which we are succeeding in moving towards a more equitable society. While race has no significant genetic basis (Rutherford, Malik, McLysaght, & Mizra, 2016) as, social constructions, racial categories have profoundly influenced the lives of South Africans in the past and continue to do so in the present. And so, to ignore their lived reality is to ignore their continued role in producing inequity. “In South Africa…a solid argument [can] be made that racialising society before and under apartheid was an economic project to create a highly rigid class system” (Seidman, in Erwin, 2012, pp. 101-102).
Our current population is estimated at 55.7 million, distributed as follows: black African 80.7%, coloured 8.7%, Indian/Asian 2.5%, and white 8.1% (Stats SA, 2017). South Africa has 11 official languages.7 One percent of the population speaks a home language other than an official language (Stats SA, 2017). The majority of South Africans are bilingual to some degree, with multi-linguicism being
5 State capture is a term which is currently widely used in the South African media and in public debate. It refers to
processes in which public institutions and government resources and funding are manipulated for the purposes of private, third-party enrichment.
6 For an exploration of systematic government corruption and collusion with external parties during the apartheid state, I
recommend the following book: Van Vuuren, H. (2017). Apartheid, Guns and Money – A Tale of Profit. South Africa: Jacana Media. Book details and reviews can be found at https://www.opensecrets.org.za/agm/. For an exploration of current government corruption and state capture, I recommend the following website: www.amabhungane.co.za and the following link: https://www.dailymaverick.co.za/section/scorpio/.
7 These 11 languages are divided into nine South-eastern Bantu languages (which can be further divided into four
sub-groupings: Nguni, Sotho-Tswana, Tswa-Ronga [Xitsonga], Tshivenda) and two West Germanic languages. The distribution of home languages spoken (in percentages) is: isiZulu 24.61; isiXhosa 16.97; Afrikaans 12.07; Sepedi (Sesotho sa Leboa) 9.53; Setswana 8.80; English 8.32; Sesotho 7.99; Xitsonga 4.24; siSwati 2.57; Tshivenda 2.37; isiNdebele 1.55; Other 0.95; Khoi, Nama and San 0.02; Sign Language 0.01 (total = 100.00%) (calculated from Stats SA, 2017).
common. English is used widely in government, business, education, the media, and civil society organisations as a lingua franca. IsiZulu (a South African Nguni language) and Afrikaans (a derivative of Dutch) often also function as everyday lingua francas (other lingua francas are also used). Now that you know a little something about my home, although captured in the terms of statistics rather than in the terms of the heart, I turn to the objectives of this research.
3.2. Research aims in flux
But, oh Lord, we pay the price
With the spin of the wheel, with the roll of the dice Ah yeah, you pay your fare
And if you don’t know where you’re going Any road will take you there
(Artist: George Harrison, Song: Any Road, 2003)
I initially hoped to focus my research on the experience of living with OCD among black South Africans. In the preparatory phase of this research, I was unable to find literature in South Africa specifically relating to OCD in this population group, beyond two studies (namely, Gangdev, Stein, & Ruzibiza, 1996; Niehaus et al, 2005).8 And therefore, it seemed to me this focus would allow for two aims to be expressed. One, to be with OCD in my own home context; and two, to explore experiences of obsessive-compulsive distress in a population group that had not yet been seriously included in the general literature of OCD. It was to be an attempt at representation. Of course, the experiences of a small number of individuals within such a large and diverse, socially created, population group could never really be representative. But is that not the point of attempts at representation; that they reveal just how complex and fraught such endeavours are.
I started by using the work of Arthur Kleinman on Explanatory Models (EMs) as inspiration (Kleinman, 1981; Kleinman & Benson, 2006). EMs refer to the ideas (or understandings) that individuals have about an illness and its treatment (Kleinman, 1981). All those engaged in an illness episode will have EMs (Kleinman, 1981). This includes patients, clinicians, other health care workers, and family members. Extending this idea to research settings (including this study); researchers too have their own EMs; as is seen in the exploration of the different conceptualisations of OCD discussed in Chapter 4.9
8 The 1st study (Gangdev et al., 1996) was a retrospective study of patients presenting with OCD at a large tertiary
hospital during the previous year. The records of six black African patients resulted and the study briefly explored the clinical features of their OCD-experiences. The 2nd study (Niehaus et al., 2005) explored OCD rates amongst individuals
with Xhosa-heritage experiencing schizophrenia. It was divided into a nonsibship group (of 301 individuals) and 100 sibships (group of 208 individuals). A total lifetime OCD rate of 0.5% was found (three in the non-sibship group and none in the sibships). This is a surprising finding, with the authors noting studies (outside of South Africa) showing OCD prevalence rates between 7.8% and 31.7% in individuals living with schizophrenia. Finally, it is possible there are studies additional to these two which exist and which I have failed to find.
9 Although Kleinman might not agree with this extension to research settings. Per Kleinman, “EMs…are marshalled in
response to particular illness episodes. They are formed and employed to cope with a specific health problem, and consequently they need to be analysed in a concrete setting” (1981, p. 106). According to Kleinman, the patient-doctor relationship can be conceptualised as a transaction between the patient-EM and practitioner-EM for an illness episode.
Kleinman (1981) distinguishes five major questions which EMs seek to explain for illness episodes. These are: cause (aetiology), time and manner of onset, symptoms (pathophysiology), course and severity of illness, and treatment (Kleinman, 1981). These understandings are elicited (from patients) through asking eight specific EM questions (Kleinman & Benson, 2006). However, I did not use these eight specific questions. Instead, I created a semi-structured interview plan with a series of questions (or areas of interest) structured around the five general areas of EM enquiry. As this was to be an exploratory study, I did not assume I would use Kleinman’s model to analyse the data, but it seemed a useful starting point from which to work. I hoped the final sample would include 8-12 individuals, but was aware going in there was a strong possibility it would be reduced to 4-6.10
As fieldwork began to progress, it became clear I would be unable to find 8-12 (nor 4-6) black African participants.11 And so, during the data collection process I made the decision to open up the study to a wider range of participants hoping for a final sample that would be ‘representative’ of our four South African population groups. I also decided to aim for at least 6 participants, instead of the 8-12 initially planned.
As I continued with my search for participants, I found my own OC-distress becoming more acute – perhaps due to the strains of the research process, perhaps due to the vagaries of fate. I’m what would be described in psychological and psychiatric literature as a ‘partial responder’. Meaning I’ve found various treatments helpful but my OC-distress remains – for me, as for many, waxing and waning in degrees of severity. My usual ability to more or less cope was morphing into less rather than more. I found myself unravelling, and then I’d ravel up. And then I’d unravel again. As my original research plans began to go astray, I seemed to be moving in all sorts of directions, not sure of where or what I wished the focus of this research to be anymore. But in the end, perhaps my objectives never really changed at all. They were, and continue to be, about three things. Home, OCD, and representation.
I am unusually fond of the number three. Prior to cognitive-behaviour therapy,12 it was a number I turned to for protection often. It was, of course, only ever able to soothe for the moment. I was asking it for more than a number can do. Yet it remains a familiar, of necessity reduced in power, but old friend still. The data I collected also seemed to turn on three. One, there was my review of the literature on psychological and medical understandings of OCD and the treatments they have given rise to. Two, the interviews with participants and their subjective experiences of living with obsessions and (or)
However, Kleinman does distinguish between clinical (practitioner) EMs and scientific EMs, noting that these may diverge in particular settings. So perhaps by recognising scientific EMs, he would allow for the extension after all.
10 This awareness was based on email exchanges with a South African OCD researcher, which took place before I
returned from Amsterdam to South Africa. I discuss this further in Chapter 6 (data and analysis).
11 The possible reasons for this are explored in Chapter 6 (data and analysis).
compulsions. And three, the participants’ treatment experiences and my search for a representative sample. I came to imagine this somewhat awkward trinity as my three data sets. Although they aren’t really (equally) best thought of as true data sets. But I believe they speak to each other in important ways and this needs consideration. I also believe that in attempting to reveal their connections I inevitably
conceal the depth in each alone. It also requires from you, the reader, that you move with a disconcerted
flow as I attempt this integration. And so, the next section explores the anthropological and (or) sociological theories and traditions I turned to for inspiration in this regard.
3.3. Theoretical inspirations
If all you have is a hammer, everything looks like a nail. (Anon)13
In search of the flow
I skip. I jump. I helter. I skelter. I twist and I turn. I jar and I clunk. I trouble and check. I blur and I weave. I shimmer and shake. I get lost and I weep. (J. Blignaut, 2017)
None of the specific anthropological or sociological theories I considered (for example, the mindful body, chronic illness as biographical disruption, labelling theory, agency vs structure) seemed able to encompass my goals for this research. Which, as discussed, had come to include the integration of my three ‘data sets’. Therefore, this thesis has no particular theoretical loyalties. It draws from a range of scholars and does so as the data is analysed. To do otherwise would be to get lost in a complex discussion of theories at the expense of continuing with the data. I was able to find some resolution to the dilemma of theory and this thesis by remembering an essay I had written and which had sourced from a textbook,
Medical anthropology and the world system: A critical perspective (Baer, Singer, & Susser, 1997). This
thesis draws, generally, from the idea of critical interpretive medical anthropology.
Baer et al. (1997) discuss three broad theoretical traditions in medical anthropology: the ecological (or adaptive) approach, cultural interpretive (or meaning-centred) theory, and critical medical anthropology (CMA). The ecological approach treats illness and disease as a "part of nature" and as (largely) "external to culture" (Baer et al., 1997, p. 25). The cultural interpretive perspective emerged as a response to the ecological approach (Good, in Baer et al. 1997). In this approach, disease is not a
natural entity but is seen as an explanatory model14 (Good, in Baer et al., 1997). From this perspective "disease is knowable, by both sufferers and healers alike, only through a set of interpretive activities. These activities involve an interaction of biology, social practices, and culturally constituted frames of meaning...and result in the construction of 'clinical realities'" (Baer et al., 1997, p. 25). Explanatory models
13 Variations of this phrase have been attributed to a number of different sources. Its exact origins are unknown. 14 This relates back to the work of Kleinman discussed in the preceding section.
have been criticised for failing to adequately take into account economic and political determinants of health-, illness- and medical-behaviour (Garro, in Dein, 2007). In contrast, critical CMA theorists focus on the role of political economy, and social and material conditions, in illness and disease.
Scheper-Hughes and Lock argue that these critical perspectives have been a needed and "useful corrective to conventional medical anthropological studies" but they have "tended to depersonalize the subject matter and the content of medical anthropology by focusing on the analysis of social systems and
things, and by neglecting the particular, the existential, the subjective content of illness, suffering, and
healing as lived events and experiences" (quoted in Baer et al., 1997, pg. 32). Scheper-Hughes and Lock describe themselves as critical interpretive medical anthropologists (Baer et al., 1997). They argue for a path between the cultural interpretive and critical traditions (Baer et al., 1997).
Thinking about Baer et al.’s (1997) descriptions of the three medical anthropology traditions, also made me think about my three ‘data sets’ and how I might structure this thesis. The idea of ‘mapping’ its structure to the understandings of these three traditions arose. 1) An understanding of illness as a natural entity largely external to culture (psychology and psychiatry)15 to; 2) understanding illness through a subjective, interpretive approach (the individual experiences of the participants) to; 3) understanding illness from a broader perspective involving the interaction of society, politics and economics (what the participants’ search for treatment, as well as my search for a representative sample, reveals). Of course, it is not a perfect mapping. For example, psychology and psychiatry can’t simply be regarded as equivalent to the ecological (adaptive) approach in medical anthropology. For one thing, they are three different disciplines. For another, there is a twist in this neat tale, revealed further on. Nevertheless, the three traditions provided inspiration for the arrangement of the ‘data sets’. This general structure (or arrangement) can be further refined into two sets of central guiding questions this research attempts to address.16
15 There are ways of understanding ‘mental’ illness (or distress) culturally in psychology and psychiatry, and there are
cross-cultural studies of OCD. But I believe to argue that current psychological and psychiatric understandings of OCD tend to see it as largely external to culture is a ‘fair enough’ evaluation of the present situation. For example, “Our comparison of trans-cultural features of OCD lends support to Del Porto’s (2001) contention that the majority of socio-demographic features and nuclear symptoms of this disorder are relatively independent of geographic, ethnic and cultural differences. Most discrepancies found in these domains probably reflect recruitment bias, conceptual uncertainties or lack of standardisation of assessment procedures. The sole exception to this rule seems to be the content [emphasis added] of obsessions, where cultural factors may play an important, if not a fundamental role” (Fontenelle, Mendlowicz, Marques, & Versiani, 2004, p. 405).
16 In other words, three pictures or representations of OC-distress are provided in order to answer two sets of research
3.3.1. Final research questions
(1) How do participants describe the lived experience of obsessions and (or) compulsions in terms of Kleinman’s five major EM questions: perceived cause; time and manner of onset; symptoms; course and impact17 of ‘illness’; and treatment? Further focusing in on treatment, what do these descriptions reveal about treatment and (or) support groups for such experiences in South Africa – specifically through the lens of five emergent themes: available expertise, cost, trust, symptoms, and agency?
(2) How does an investigation of current knowledge and debate (in international research literature) regarding the ‘proper’ conceptualisation and treatment of OCD; together with a descriptive account of this researcher’s attempts to source study participants; provide an opening for a tentative exploration of possible future directions for improving epidemiological knowledge, treatment and awareness of OCD in South Africa?18
The first part of Question (1) remains unchanged from the inception of this research.19 The secondary part of Question (1) emerged – as a particular area of interest for more detailed analysis – out of the participant interviews covering the five EM areas of inquiry. Question (2) emerged as an additional research question motivated by the challenges of the research process itself.
So, we are ready to move again, away from South Africa, to begin our first exploration, into the worlds of psychology, psychiatry and neuroscience.
17 Note: Kleinman refers to severity rather than impact. However, my interview schedule was set up to explore both the
severity of symptoms/illness and the impact of these experiences on the lives of participants, as these imply one another.
18 Participants’ experiences with accessing treatment and (or) support also inform this exploration – so it is not an entirely
separate question to Question (1). Also, this exploration is very tentative. It does not suggest solutions, so much as suggest ‘problems’ and possible reasons for these. I leave the issue of solutions very much open.
Chapter 4
Conceptualisations of OCD
4.1. Current definitionsEen been op de stoep
Ik loop met een been op de stoep en een been in de goot
en als ik dat niet doe dan ben ik morgen dood. Ik kom er niet vanaf. Ik baal er wel eens van.
Ik weet alleen maar dat ik het niet laten kan. ….
Met een been op de stoep bezweer ik het gevaar.
Ik vind het zelf een raar verhaal. Is dit nou normal, ‘t is toch niet normal? (Kinderen vor Kinderen, 1987)
One foot on the sidewalk
I walk with one foot on the sidewalk and one foot in the gutter
and if I don’t tomorrow I might die. I cannot get rid of it. I sometimes hate it.
All I know is that I cannot stop myself. ….
With one foot on the sidewalk I avert the danger.
I find it strange myself.
Is this normal, it isn’t really normal? (Dutch children’s song, 1987)20
Some people wash their hands and…some people wash their minds. (Jon Hershfield, in Hershfield & Ralph, 2016, 3:40)
Obsession, obsess, obsessing, obsessed, obsessive, obsessively. Compulsion, compel, compelling, compelled, compulsive, compulsively. Nouns, verbs, adjectives, adverbs. Words describing things and actions, states of being and doing, ways of being and doing. Words belonging to everyday language and everyday experience. But for psychology and psychiatry their meanings have come to be specifically defined. They have also been weaved together to form new permutations: obsessive-compulsive, obsessive-compulsive disorder, OCD, OCS,21 OCPD,22 OCRD,23 and so it goes.
20 This is not a folk song. It is a song by a Dutch children’s choir (Kinderen vor Kinderen) maintained by a public
broadcaster (VARA) in which children write in and then songs are created from this. A Dutch friend drew my attention to this song and another Dutch friend translated it for me and explained its history. This is just a brief extract. The Dutch lyrics can be found at http://www.songteksten.nl/songteksten/43704/kinderen-voor-kinderen/een-been-op-de-stoep.htm, and the song on YouTube at https://www.youtube.com/watch?v=iXMkLRqplHQ.
21 Obsessive-compulsive symptoms
22 Obsessive-compulsive personality disorder 23 Obsessive-compulsive and related disorders
There are two major diagnostic systems widely used to classify mental illness (Marras, Fineberg, & Pallanti, 2016). One is the DSM-524 developed by the American Psychiatric Association (APA) and released in 2013. The other is the ICD-1025 developed by the World Health Organisation (WHO) and approved in 1990. While the diagnostic criteria for OCD in these two systems show similarities, they also show “marked differences” (Marras et al., 2016, p. 324). The ICD-11 is expected to be approved in 2018 and the draft version indicates that its OCD criteria will more closely align with the DSM-5 (Marras et al., 2016). Therefore, the general definition which follows is more in line with DSM-5 criteria than ICD-10 criteria (APA, in Friedland, 2015).
Obsessions are persistent, unwanted, intrusive thoughts, images or impulses (urges). Compulsions are repetitive behaviours or mental acts. This is a definition that seems to turn on two: obsessions and compulsions. It is possible to experience only obsessions or only compulsions. But it appears more common to experience both and there appears to be a functional relationship between the two (Foa & Kozak, 1995). So it is really a definition that turns on three. The obsessions give rise to anxiety and distress; and compulsions are performed to reduce this distress (Abramowitz, 2006). And so a repetitive cycle is born: obsession + distress = compulsion.26 By reducing the distress, this enacted compulsion, paradoxically, serves to tighten the bond.
The DSM-5 includes time and degree of disruption in its OCD criteria. For diagnosis, obsessions and (or) compulsions must take up significant time (in the 4th edition [DSM-IV-TR]27 this was quantified as more than one hour per day). These should also significantly disrupt and distress the lives of OC-experiencers (APA, in Friedland 2015). OCD is often characterised as ‘with insight’ and ‘egodystonic’. Insight refers to awareness of the ‘strangeness’ of the obsessions and compulsions and recognition that they arise internally (from the self). Egodystonic refers to self-generated thoughts and behaviours experienced as in conflict with one’s wishes and values. However, it is not always the case that these are present. Insight may be partial or absent. And obsessions and compulsions can be experienced as
egosyntonic. Some insight is no longer a requirement for diagnosis in the DSM-5. But levels of insight
(good/fair, poor, absent) should be specified as part of the diagnosis (APA, in Friedland 2015).
24 Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition
25 International Classification of Diseases and Related Health Problems, Tenth Revision
26 This could equally be represented as obsessional distress followed by compulsion. Or obsession evokes
distress, so therefore compulsion. Also, with my use of mathematic symbols above, I don’t mean to suggest that this
is a simple or formulaic relationship. Nor that things end there. I’m attempting to make a short-hand as a conceptual beginning for the exploration of how these might relate to each other and mutually reinforce one another, keeping the OC-cycle going.
It may be useful to turn to an example to further explore the features of obsessions, its attendant distress, and compulsions. In his 2014 book, The Man Who Couldn’t Stop, David Adam explores the history, science and treatment of OCD. A British science journalist, his book is also part memoir of his own OC-experiences. In an online interview, David was asked how he explained OCD to those unfamiliar with it. This was his reply,
So this is the idea that everybody has these thoughts and most people don’t talk about them. So, when people said to me: what is the book about, I would get to the point when I’d say, well you know when you waiting for the train, do you ever get the urge to jump? And people…they’d look at me like I’d read their mind. And they’d say, yeah, how’d you know that? I’d say, well, so, that’s kind of what OCD is, but OCD is taking a step back, rather than saying what a weird thought and then, oh, look here’s the train, I’m gonna get on it. OCD is listening to that thought, and instead of saying what a weird thought, saying ooh, because I have that thought it might mean I might want to do this, so I better take a step back. And the next day one step back isn’t far enough, so you take two steps back. And then a week later maybe you don’t ever go and get the train again and just think of the impact that’s going to have on someone’s life (Adam & Ralph, 2016, 39:49).
The obsession could be experienced as a thought: I might jump. Or as an image: a vision of your body broken on the tracks. Or as an impulse: a momentary urge forward, a brief inner lurch. Or as a combination of these. And the distress might be fright, a moment of horror then a rising anxiety, a terrible dread. And the compulsion? In this case it is not so clear. Compulsions are repetitive behaviours or mental acts. Avoidance isn’t quite either of these. However, “although avoidance…is not part of the [DSM-5] definition of OCD, it is an integral part of the disorder” (NCCMH, 2006). Compulsions are aimed at reducing existing obsessional distress; while avoidance is “intended to prevent exposure to situations that would provoke” obsessional distress and compulsions (Abramowitz & Jacoby, 2015, p. 168).
As compelling as Adam’s example is, it might be useful to try some further examples. Abramowitz et al. list four dimensions of OC-symptoms most consistently identified in previous research (2010). These are:
1. Concerns about contamination
2. Concerns about being responsible for harm, injury, or bad luck 3. Unacceptable (taboo) thoughts
4. Concerns about symmetry, completeness, and the need for things to be ‘just right’ Abramowitz et al. (2010) have developed a measure of OC-symptoms centred around these four dimensions and I have used this measure with participants. This questionnaire is included in Appendix A. The following are examples of common obsessions [O] and compulsions [C] taken (largely verbatim) from the questionnaire:
• Category 1 [O] Persistent thoughts or feelings that you are contaminated because you came into contact with a certain object or person. [C] Repeatedly washing your hands, showering or cleaning because of concerns about contamination.
• Category 2 [O] A persistent doubt28 that you might have made a mistake that could cause [or has caused] something harmful or awful to happen. [C] Repeatedly checking things such as locks, switches, and so forth, more often than is necessary [this could include repeatedly asking for reassurance from others about the doubt, or even seeking reassurance from the ‘self’ by repeated weighing of the evidence, through mental scenarios, for or against the likelihood of harm].
• Category 3 [O] Persistent unpleasant thoughts about sex, immorality, blasphemy, or violence that come to your mind against your will. [C] Repeating an action, or following a special routine, because of a bad thought [this could include mental acts such as silent praying, or attempts at neutralizing – such as thinking a ‘good’ thought to counteract the ‘bad’ thought].
• Category 4 [O] Persistent feelings that something isn’t ‘just right’; or the persistent need for symmetry, evenness, balance, or exactness. [C] Repeating a routine action until it feels ‘just right’ or balanced; or counting things such as ceiling tiles or the words in a sentence.
The examples go on. OC-experiences can be remarkably varied and creative in their content. Furthermore, this relatively straightforward model of: obsession + distress = compulsion, is really far more complex. But with this starting point, we are able to move to the next section and consider how OCD has travelled through psychological and medical time to arrive at its current place.
28 Doubt and uncertainty are common in OCD. OCD has been referred to, historically, in French psychiatry as 'la folie de
doute' – the doubting disease (or direct translation – the madness of doubt). In this context it also referred to the significant indecisiveness that may accompany obsessional doubt.
4.2. Past to present
Note: In textbox to the right, I’ve included definitions of a few terms you or may not be familiar with. I did not want to include these as footnotes, as it would make for disrupted reading. I suggest you start this section by reviewing the textbox before moving on.
Medical knowledge about illness and disease is not necessarily given by nature but is constructed and developed by claim-makers and interested parties. (Conrad & Barker, 2010, p. S67)
It seems possible to imagine obsessive and compulsive experiences have always been a part of the human personality, and yet the ways in which these experiences have been conceptualised over time has undergone many changes. De Silva (2006) points to early Buddhist writings containing references to thoughts and behaviours which today might be considered indicators of OCD. For example, an early text “describes a monk at the time of the Buddha (over 2500 years ago) who engaged in sweeping the monastery with a broom repeatedly” (de Silva, 2006, p. 402). The sweeping took up most of his time with priority over anything else (de Silva, 2006). Religious figures in the West such as Martin Luther (1483-1543) and John Bunyan (1628-1688) also showed signs of OCD (de Silva, 2006). Luther, tormented by doubts about whether he had confessed fully and properly (de Silva, 2006). Bunyan, by fears that he might blurt out words of blasphemy instead of words of praise (de Silva, 2006).
In previous centuries, possession was believed to be the root of obsessive sexual or blasphemous thoughts and “exorcism was the
Psychodynamic (or depth) therapies represent one branch of applied psychology. Freud’s psychoanalysis can be considered the founder of these types of therapies, and Freud’s couch is a prototypical image of psychotherapy. But the theory and practice of psychology is far more diverse. Therapeutically, psychology includes, for example, humanist (e.g. person-centred therapy) and existential traditions, as well as the newer cognitive behavioural approaches.
Behaviourism is a school of psychology concerned with how behaviour is learned. Its focus is on building learning theories and therapies based on observable behaviour rather than inner cognitive (thought) processes. Its theories are often based on animal models. Think Pavlov’s dog and Skinner’s box; classical conditioning and operant conditioning. These animal models allow for the pairing of different stimuli in different ways and at different timings to understand how these pairings give rise to various behaviours in response to these. These experiments have often been far from kind to the animals involved. Two fundamental underpinnings of behaviourism are its empirical orientation and the belief that human and animal behaviour are comparable.
Cognitivism as a field within psychology is a little more difficult to summarise than behaviorism, and some may object to my simplifications. Behaviourists hold behaviour as the central phenomena of interest. Cognitivist hold inner mental processes as the central phenomena of interest. Behaviourists accept the existence of thoughts but these thoughts are determined by behaviour. But cognitivists hold that thoughts are able to influence behaviour. The role of thinking, memory, perception, attention and information-processing in influencing behaviour, are all of interest to the cognitive paradigm. If behaviourism is about exploring the various stimulus-response links which cause conditioned behaviour; then cognitivism is about the cognitive processes that mediate both affect (feelings and emotions) and behaviour. Both are committed to the practice of the empirical scientific method and building an evidence-base for their applied therapies.
ERP (exposure and response prevention) or (exposure and ritual
prevention). The fundamental principles of ERP are ‘relatively’
straightforward and remain ‘relatively’ unchanged since they were developed. They involve exposure to the situations that usually evoke obsessional distress and then refraining from performing the usual compulsions (ritual behaviours). This is usually done through a process of gradual exposure in which individuals create a hierarchy of fears, starting with those considered moderately difficult and then moving up to the top of the hierarchy of fears. There is some new evidence to suggest that it may be useful to ‘mix’ this order up somewhat (Craske, Treanor, Conway, Zbozinek, Vervliet, 2014). However, even with this new information, it is recommended that ERP should still begin with easier exposures, at least until one has ‘settled’ into the ERP process.
treatment of choice” (Jenike, 2001, p. 5). However, over time, the explanations for the causes of OCD shifted from religious to medical ones (Jenike, 2001).29 “First described in the psychiatric literature…in 1838,…by the end of 19th century it was generally regarded as a manifestation of depression or melancholy. By the beginning of the 20th century, theories of obsessive-compulsive neurosis shifted towards psychological explanations” (Jenike, 2001, pp. 5-6). Two influential figures of the time were Pierre Janet and Sigmund Freud. “Janet reported successful treatment of [compulsive] rituals with behavioural techniques” (Jenike, 2001, p. 6). But it was Freud's theories that were to win out in this regard.30 OCD came to be viewed as the result of unconscious conflicts due to thoughts and behaviours which had become isolated (cut-off) from their original emotional causes (Jenike, 2001). As such, there was a move toward treatment with psychodynamic therapies aimed at discovering, revealing and resolving these unconscious conflicts (Jenike, 2001).
But this picture too underwent revision. OC-distress evolved from Freudian neurosis to become an anxiety disorder, responsive to pharmaceutical drugs and “in the 1960s was taken up by behaviourists and cognitivists” (Healy, in Moutaud, 2015, p. 226). This led to the development of the behavioural therapy called exposure and response prevention [ERP]. Today ERP is still considered the gold standard for reducing OCD-symptoms (Jenike, 2001).
It also lead to the development of cognitive models for explaining the cognitive processes believed to play a role OCD. These include models such as inflated responsibility, thought-action fusion,
the metacognitive model, and looming vulnerability (Gwilliam, Wells, & Cartwright-Hatton, 2004; Riskind
& Rector, 2007). These approaches share common elements and overlap yet are each distinct. Generally these models attempt to explain how underlying beliefs,31 negative appraisals and erroneous interpretations regarding the meaning of one's thoughts, feelings, and external events; and how these relate to each other; influence the development and maintenance of the OCD-cycle. These cognitive models led to the application of cognitive therapy [CT] to the treatment of OCD. CT is aimed at modifying
29 No doubt, due to corresponding intellectual movements such as the Enlightenment.
30 Although, “recently, there has been a resurgence of interest in Janet’s (1908) concept of incompleteness (INC) as
another potentially important motivator [of obsessive-compulsive symptoms]” (Taylor et al., 2014, p. 254). So while Janet lost the battle, he appears to have won the war.
31 These underlying beliefs domains include: excessive responsibility, over-importance (-valuation) of thoughts, need to
control thoughts, overestimation of threat, perfectionism, and intolerance for uncertainty (Obsessive Compulsive Cognitions Working Group, in Abramowitz, 2006).
the dysfunctional beliefs and thought patterns associated with the cycle, by helping the OCD-experiencer to develop alternative beliefs and interpretive strategies.32
But time waits for no man and, it seems, no dis-ease. In the previous 2-3 decades, changes in the conceptualisation of OCD are occurring again, as research into its biology has accelerated (Jenike, 2001). According to Stein (2002, p. 397),
Today, obsessive-compulsive disorder is viewed as a good example of a neuropsychiatric disorder, mediated by pathology in specific neuronal circuits and responsive to specific pharmacotherapeutic and psychotherapeutic interventions. In the future we can expect more precise delineation of the origins of this disorder, with integration of data from neuroanatomical, neurochemical, neuroethological, neurogenetic and neuroimmunological research.33
Space does not allow for the exploration of the evidence for these claims in detail. But three sources seem (briefly) worth mentioning: the fact that OCD responds to a narrow range of medications; its claimed hereditability;34 and the results of neuroimaging studies (see, for example, Stein, 2000, 2002, 2007).
Pharmacology: of the various classes of psychiatric medications, only those that work on the
serotonin system seem to consistently aid in reducing OCD symptoms (Sasson et al., 1997; Stein, 2000, 2002). These drugs include an older drug called clomipramine (a tricyclic antidepressant) and the newer selective serotonin reuptake inhibitors [SSRIs]. In contrast, for example, depression seems to respond more widely – to both serotonergic and non-serotonergic antidepressants (Sasson et al., 1997). “The selectivity of clomipramine for serotonin led to the hypothesis that a serotonin deficit is responsible for the symptoms of OCD” (Decloedt & Stein, 2010, p. 234). Since then, “the additional importance of dopamine12,13 [citation numbers] and glutamate dysfunction14,15 [citation numbers] in the pathophysiology of OCD has been established” (Kellner, 2010, p. 188).
32 It is often stated that cognitive-behaviour therapy [CBT] is the psychotherapy of choice for OCD. This is somewhat
misleading. CBT is an umbrella term that covers a wide range of therapies drawing from behaviourism and cognitivism in varying degrees. These therapies include, for example, rational emotive therapy, dialectical behaviour therapy, and
acceptance and commitment therapy [ACT]. Not all therapies that may be said to fall under the ‘CBT umbrella’ are equally
effective for OCD. As mentioned, the first-line CBT therapy of choice for OCD remains exposure-based [ERP] (Abramowitz, 2006). ERP is best defined as a behavioural therapy with incidental cognitive elements (Tolin, 2009). In contrast, CT is a cognitively-focused therapy with incidental behavioural elements (Tolin, 2009). ERP, CT, and (the emerging therapy) ACT are considered the most viable specific therapies for OCD but, as mentioned, ERP still takes ‘first-place’ (see, for example, Abramowitz, 2006; Abramowitz, Blakely, Reuman, & Buchholz, 2017; Twohig, Whittal, Cox, & Gunter, 2010).
33 The repeated use of neuro in this paragraph, together with the indeterminacy of exactly what is being claimed, seem
worth noting here.
34 Note: the fact that something is heritable does not automatically imply it will be inherited. Heritability refers to general
patterns (or rates) of inheritance. Something may be heritable but unlikely to be inherited, or very likely to inherited, or grades in between.
Genetic studies: according to Decloedt and Stein,
The exact etiology of OCD remains uncertain but systematic family and twin studies have demonstrated the moderate heritability of OCD.10 [citation number] A range of association studies to identify genetic
components possibly involved in the etiology of OCD has been undertaken.11 [citation number]
Disappointingly, however, gene association studies have often failed to replicate one another….It is possible that multiple genes, each with small effects, contribute to OCD (2010, p. 234).
According to Nestadt, Grados, and Samuels (2010), “the available evidence does not” yet “support a sustainable biological [genetic] hypothesis” (p. 8); and OCD likely has a “complex pattern of inheritance” (p. 1), still poorly understood.
Brain imaging studies: results from imaging studies are said to show various abnormalities in the
brain activities of OC-experiencers. Whiteside, Port, and Abramowitz conducted a meta-analysis of these studies and found,
Results suggest that differences in radiotracer uptake between patients with OCD and healthy control have been found consistently in the orbital gyrus and the head of the caudate nucleus. No other significant differences were found….Although these findings indicate that such brain regions are in some sense
involved in OCD, the designs of existing studies [as they are not experimental in design] do not permit one
to conclude that (a) the differences represent abnormalities in functioning or (b) the differences are related to the cause of OCD….Specifically, there are three possible explanations for the current findings: (1) alterations in functioning in certain brain regions cause OCD; (2) OCD causes alterations in functioning as observed in certain brain regions; or (3) a third variable causes both phenomena [and present data does support one over the other] (2004, pp. 69, 76).
Whiteside et al. (2004) caution against the over-interpretation of the significance of these provisional results. One might also extend this caution to neurochemical interpretations of OCD. Points 1-3 above seem equally applicable to theorised serotonin levels. Considering these three areas of evidence regarding the neurobiology of OCD, one is inclined to think the Emperor has managed to locate his boots but still finds himself in search of the rest of his clothes.
OCD has recently undergone yet another conceptual shift, one closely tied to this research into the biology of OCD and to the rise of neuroscience as an increasingly influential field.35 OCD was classified as an anxiety disorder in the DSM-IV-TR (Moutaud, 2015).36 However, in the DSM-5, OCD has been removed from the Anxiety Disorders section and placed under a newly created one:
35 Some have referred to this rise as the neurological turn, the equivalent of the 1970s cultural turn.
36 And thus (at the time) kept company with generalized anxiety disorder [GAD], phobias (including social phobia), panic
Compulsive and Related Disorders37 [OCRD] (Moutaud, 2015). According to Moutaud, “OCRD…is only a truncated emanation of [an] initial project to establish a broader category of ‘Obsessive-Compulsive Spectrum Disorders’ [OCSD]. OCRD is the result of a consensus reached during the development of the DSM-5 and it highlights the failure of the new edition to establish a dimensional classification based on neuroscience data (Demazeux, 2008)” (2015, p. 227). The DSM-5, as with all previous versions, uses a categorical, criteria-based, approach to diagnosis. So either you meet the criteria and fall into the category or you don’t. There was talk, and advocacy, for various dimensional approaches to be introduced across the DSM-5, to supplement this categorical approach.38 Depending on the number of dimensions, a dimensional system can end up being complex to describe, and so I simplify my description here. Dimensional approaches can be used within a disorder (by allowing ratings of severity along a continuum – e.g. little bit OCD, moderately OCD, a lot OCD). But they can also incorporate the use of symptom dimensions that cut across disorders (i.e., occur in a number of different disorders).
Those who argued for OCSD proposed a spectrum of disorders characterised as ‘compulsive’ on one end and ‘impulsive’ on the other (Hollander, 2007). A core symptom of OCD (repetitive behaviour) could then be plotted against a construct such as inclination to risk. So individuals who are risk-aversive will engage in compulsive behaviours geared towards neutralising threat (so they can present with, for example, OCD, BDD, or anorexia). Individuals who are risk-takers will engage in impulsive behaviours geared towards short-term arousal, pleasure or gratification (so they might present with, for example, pathological gambling, compulsive buying,39 or kleptomania) (Hollander, 2007). Depending on the number of dimensions used, the number of disorders falling within this OC-spectrum potentially increases. This has implications in terms of research directions and opportunities; and the off-label use of drugs (which can now be targeted at symptom profiles, or clusters, rather than the discrete disorders they were approved for).40,41
37 Composed of five disorders: obsessive-compulsive disorder [OCD], body dysmorphic disorder [BDD], hoarding
disorder (previously part of OCD, now a disorder in its own right), trichotillomania (hair-pulling), and excoriation disorder (skin-picking).
38 This whole (wider) dimensional initiative failed – not just the OCSD initiative.
39 Despite the ‘compulsive’ in the name, compulsive buying is considered an impulse control disorder.
40 The wider dimensional initiative was also an attempt to resolve the widespread problem of ‘comorbidity’. Using a
categorical approach means individuals often end up fitting into multiple diagnostic categories and so receive diagnoses of more than one mental illness. “Concurrent diagnostic comorbidity is the norm rather than the exception, with the rate dramatically increasing if one considers lifetime comorbidity (Brown, Campbell, Lehman, Grisham, & Mancill, 2001)” (Widiger & Samuel, 2005, p. 495).
41 One consequence “of the entry of the OCRD category in the DSM was the launch in 2012 of a journal devoted to it
called Journal of Obsessive-Compulsive and Related Disorders” (Moutaud, 2015, p. 232). Another consequence will be to “fuel increased funding and research on OCD and these putatively related conditions” (Abramowitz, quoted in Moutaud, 2015, p. 232).
Moutaud (2015) argues that this recent reconceptualization from anxiety disorder to an OCRD, means that instead of a disorder driven by affect,42 OCD is increasingly being viewed as a disorder of urge-control. In the cognitive-behavioural model, anxiety, an affect, is viewed as integral to the OC-cycle.
Cognition (obsessions) gives rise to affect (anxiety); which in turn gives rise to behaviour (compulsions)
to manage this affective distress. Now a new hierarchy is being established, and anxiety moves into the background as the focus shifts in direction from affect to behaviour, from emotion to motor-control (Moutaud, 2015).43
From the preceding exploration, it is possible to see how dominant models for understanding the human psyche have influenced understandings of OCD over time. OCD has followed these changing conceptions of the relationship of the body to the mind; of nature to the divine; of how it is that matter and consciousness entwine. And this exploration also shows how, in turn, OCD has acted-acts as an entry point into these investigations. A period of time over which Descartes’ ‘ghost in the machine’44 has come, instead, to be regarded more as ‘ghostly machine’. Stein (2002) points to brain imaging research showing ‘normalisation’ of activity in certain brain circuits after treatment with an SSRI or with exposure therapy. The effects of these therapies of matter (medication) and therapies of mind (exposure therapy) both appearing to show in the brain. Revealing mind as part of the body and body as part of the mind. No neat dividing line, no ‘tear here’, allowing us to so easily separate the territory of one from the other.
42 Note: the terms affect [noun] and affective [adjective] are used differently in psychology than in philosophy or
anthropology. As a simplification, in psychology, affect generally refers to emotions, feelings or moods.
43 Moutaud’s analysis took place in the context of “ethnographic research of a French neuroscience team that developed
experimental therapeutics [deep brain stimulation] for OCD” (2015, p. 226). Deep brain stimulation is a theoretically reversible form of neurosurgery, and has its roots as a treatment developed for Parkinson’s disease and essential tremor (Moutaud, 2015). Non-reversible forms of psychosurgery are also used in the treatment of OCD. According to Doshi, “surgery for OCD is reserved for patients with the most severe cases of the disease, when pharmacological and psychotherapeutic alternatives have been exhausted” (2009, p. 217).
44 Descartes, himself, did not use this term. It was Gilbert Ryle who coined the term ‘ghost in the machine’ in reference
Trying
It is an unravelling time. Made young once more, I have gone to my parents to write. “Can I read this to you? I think I got carried away with the whole ‘ghostly machine’ metaphor. I wanted to follow on from the ‘ghost in the machine’ reference but machine isn’t really a good metaphor for human biology,” I say. “Janine, I really don’t know what you are talking about,” my father replies, looking up from his book. So I read it to him.
“I still don’t know what you’re talking about,” he says.
“It’s about Descartes and the perennial mind-body problem,” I say. “I thought Descartes was a mathematician,” he says.
“What?” I reply.
“Something to do with graphs, x and y,” he says.
“Really? I know him as the guy who bedevilled us with dualism,” I reply. “I’m an old accountant. The only thing I know about dualism is that your debits should equal your credits,” he says while balancing his hands in the air. I laugh and shake my head.
“So can I leave in the bit about the ‘ghostly machine?” I ask.
“Yes, Janine. But you’ve been stuck on that paragraph all evening. Do you think you could just carry on and get to the end?” he says, not unkindly.
“I’ll try,” I reply. (J. Blignaut, 2017)
So I must hurry and move, at a time when I do not know how to hurry and move. I have gotten lost again. It is time to wrap up this section. We have travelled the past to arrive at OCD’s present place – one of five OCRDs: Obsessive-Compulsive and Related Disorders. It is a contentious space. Some are pleased. Others are not. Those pleased point to the fact that obsessions are not always experienced as purely cognitive events, and that the affective distress they give rise to is not always best described as anxiety (Marras et al., 2016). “Increasingly recognised non-cognitive events called ‘sensory phenomena,’…may precede compulsions. ‘Sensory phenomena’ is a term that encompasses a variety of subjective experiences, also referred to as ‘premonitory urges,’…‘sensory experiences,’ ‘feelings of incompleteness,’ and ‘not just-right phenomena.’12 [citation number]” (Marras et al., 2016, p. 325). Then there is the issue of the affective distress, “the emotional consequences of an obsession are difficult for some…to articulate and are often described as ‘discomfort’ or distress” (Veale, 2004, p. 65).45 Veale (2004) notes in cases where the obsession relates to preventing future harm, the dominate emotion may
45 Note: I am using David Veale as a source to describe the variety of distress possible in OCD, but I am not aware of
be anxiety. With contamination, disgust. With taboo thoughts, shame. With fears of having already caused harm, guilt. Depression often makes its way into the long-term equation due to the ongoing strain caused by the OCD-cycle. “Because of the range of emotions, it is not surprising that some…find it difficult to articulate and untangle their dominant emotion” (Veale, 2004, p. 66).
Others believe this to be a mistaken turn. In a critical review of the new OCRD class, Abramowitz and Jacoby state, “although this new category promises to raise awareness of underrecognized and understudied problems, its empirical validity and practical utility [emphasis added] are questionable” (2015, p. 165). There is concern that a valid and useful (clinical) construct – OCD as anxiety disorder – is being lost in this move. And also that the creation of a related category may lead to clinicians to assume similar treatments work for the five OCRDs,46
for those who focus exclusively on symptom form…and…those invested in a neurobiological explanation for such symptoms, the illusion that OCD is a disorder of behavioural inhibition would be very seductive. Yet research does not support this position….Obsessional thoughts and anxiety arise…from mistaken perceptions of normal cognitive intrusions…[C]ompulsive rituals are deliberate acts [to reduce this distress]…[T]he process of classical conditioning and negative reinforcement maintain obsessional fears and compulsive urges (Abramowitz et al. 2009).47…The[se] are…the same processes involved in the
maintenance of anxiety disorders such as social anxiety disorder, panic disorder, agoraphobia, and PTSD (Abramowitz et al. 2012, Barlow 2004)….[T]reatment…which aims to extinguish irrational fear using exposure…is highly effective for OCD, BDD,48 and other anxiety disorders. Trichotillomania, skin picking,
and hoarding disorder…[demonstrate] mixed responses to exposure-based treatments….[F]irst-line treatment for hair pulling and skin picking is habit reversal training (Abramowitz & Jacoby, 2015, p. 181). One of the arguments put forward for the OCRD category is comorbidity. It is said that high rates of comorbidity occur between the five OCRD disorders. But “research shows that OCD is more consistently comorbid with anxiety disorders than with [some of the] OCRDs.…5 to 10 times more closely
46 As a brief anecdote of how the change can translate into lived experience; one participant, Tanesh, has recently joined
an anxiety and depression support group. The group leader mentioned in passing that OCD isn’t one of the anxiety disorders. Which is correct according to the DSM-5 classification which she is studying (she wasn’t meaning to suggest he does not belong in the group. Tanesh describes a dedicated group leader keen to do all she can to help). But the unintended consequence of this is that it has caused Tanesh to doubt whether he is in the correct support group. But, ironically, given OCD has strong anxiety elements and that depression often co-occurs with OCD, it is probably the most appropriate support group for him, given that no OCD group exists in his area.
47 Reinforcement refers to behavioural reward. If a behaviour is rewarded it will be more likely to be repeated. Negative
reinforcement means the reward occurs as a decrease (reduction) in ‘pain or distress’. Positive reinforcement means the reward occurs as an increase in ‘pleasure, enjoyment or satisfaction’. While the OC-cycle is believed to be maintained through negative reinforcement, in contrast, for example, the trichotillomania-cycle may be maintained through positive reinforcement (the experience of hair-pulling as enjoyable – although it may be followed by anxiety and regret at a later point).
48 Body Dysmorphic Disorder. Abramowitz and Jacoby (2015) hold that BDD is the one example of an OCRD which may
