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ORIGINAL ARTICLE
Chickens or eggs? A follow-up case study exploring links between physical and psychological impact of Tourettes syndrome and sexual abuse
KIM ETHERINGTON
Graduate School of Education, Counselling Programmes, University of Bristol, UK
Abstract This follow-up case study highlights the complex relationship when working at the interface between physical and psychological symptoms. The paper draws upon conversations between an ex-client and myself, held seven years after the end of our six year therapeutic relationship. Conversational interviews, based upon social constructionist beliefs, led to an unexpected exploration of the clients subsequent diagnosis of Tourettes syndrome (given several years after the end of therapy) and evolved into a struggle to reach a shared understanding of how she now makes connection between her problem with eating in public, her neck and facial tics, and childhood sexual abuse. Our research relationship provided both of us with a rare opportunity to reflect upon how she had made meaning of her counselling and its outcomes. The paper draws attention to the impact of counselling and therapy discourses concerning sexual abuse on the work we did at the time and asks how that work might be different today. It also helps us understand the layers of complexity and ambiguity contained within the clients stories. This multi-layered case study represents the overlap and messiness that mirrors the lived experience of the persons involved, and provides an example of how co-constructed research conversations can evoke stories that create meaning as they are told.
Keywords: Case study, Tourettes syndrome, sexual abuse, psychological effects of disability, somatisation
Introduction The task for this paper is to tell a multi-layered story based on social constructionist research methods that will inform and interest researchers, theorists and practitioners about topics that arise when working at the interface between a physical condition and childhood sexual abuse. The paper begins with a focus on my six year therapeutic relationship with Connie (pseudonym), and what she had to say seven years later about the meaning of that work for her. It then unfolds to include her diagnosis and experience of living with Tourettes syndrome and the aftermath of childhood sexual abuse, showing how both create confusion within and between client and therapist. By bringing these complex issues together in one paper I am trying to represent the overlap and messiness that mirrors the lived experience of the persons involved and to create an example of how coconstructed research conversations can evoke stories that create meaning as they are told. The research conversations used to gather the material for this paper are collaborative and negotiated between equals rather than hierarchical interviews in which the interviewer mainly holds the power. Ellis and Berger (2003, p. 162) suggest that
the interviewer tries to tune into the interactively produced meanings and emotional dynamics that emerge as the conversation unfolds. However, power imbalances and inequalities cannot be denied between researcher and participant any more than between client and therapist, especially when the participants are ex-clients, and for this reason research relationships need careful negotiation. In representing Connies story I have tried to make transparent how I influenced and shaped the way the conversations unfolded by their discursive nature. Research interviewers have been criticised for producing silently orchestrated conversations (Speedy, 2001) that disallow any view of the power relations within research (Mischler, 1986; Kvale, 1996, 1999). Methodologically this provides greater opportunities for open-ended responses and a more intimate exploration of a persons lived experience and therefore perhaps, greater potential for understanding (Etherington, 2004). Background Connies therapy had taken place between January 1991 and September 1997 and I had received
Correspondence: Kim Etherington, Graduate School of Education, Counselling Programmes, University of Bristol, 8-10 Berkley Square, Clifton, Bristol, BS8 144, UK. E-mail: k.etherington@bris.ac.uk 1473-3145 (print)/1746-1405 (online) 2006 British Association for Counselling and Psychotherapy DOI: 10.1080/14733140600711500
How a client had made meaning of her experience of counselling and its outcomes seven years after the six year counselling ended How she experienced living with Tourettes syndrome and the aftermath of childhood sexual abuse How co-constructed research conversations can evoke stories that create meaning as they are told
have happened to me. When I look back it was almost like you had prepared me for it, by helping me understand myself. We met in January 2005 for two hours and taped our conversation. The tape was transcribed and returned to Connie for checking. Whilst writing this paper we have communicated by email as further questions have arisen. A second meeting was set up in April to address some of those questions. Connie has seen and approved this paper for publication. Introducing Connie
humorous Christmas cards each year until 2001. After several years silence I received a Christmas card in 2004 with a letter tucked inside giving her phone number, new home and email address. She wrote that she had recently moved house and, in packing up, she had found the notes she made during therapy and was astonished to read how difficult that process had been, and that she was only now able to appreciate how therapy had helped her. My relationship with Connie had been an important one for both of us and I was interested to know what had happened to her. Since we ended our work I had become actively involved in research, using narrative inquiry and life story methodologies, and had written a book with two of my ex-clients about their experience of our therapeutic relationship (Etherington, 2000). I had been able to learn a great deal from that project and now Connies letter, with its clear but indirect request for contact, seemed like a wonderful new opportunity to look back on my practice from a different stage in my life. So I invited Connie into a different relationship with me, one of participant and researcher, after explaining the purpose of the research and negotiating informed consent. Ethical issues, concerning confidentiality, her right to see anything that was written about her, and to withdraw permission at any stage without giving a reason, were all explained and we discussed the different expectations in the relationship between researcher/participant, and client/therapist. I made it clear that I would not be in a position to offer further therapy and she was clear that this was not what she was seeking, but rather an opportunity to talk about what had happened to her since we last met and to reflect upon our time together from a new stage in her life. In the light of her history of abuse I needed to monitor through ongoing process consent the possibility that inadvertently I might also be using her for my own ends. Connies ongoing feedback reassured me that she was getting as much out of the process as I was. During the initial phase of the research Connie told me in an email that she had sold her business two years after the end of her therapy and . . . about six months after that I had a breakdown. In a strange way it was the best thing that could
Connie had been given my name by a local GP via a friend. We met three months after I had started a Masters in Counselling, having received a postgraduate diploma three years prior to that. Because much of my work has been in the field of sexual abuse, psychodynamic concepts (particularly related to defence mechanisms and the presenting past) were helpful in my practice, whilst also engaging in a person-centred relationship-based therapy. Connie was 26 when we met and she told me she felt choked and embarrassed when trying to eat in public places and increasingly she avoided social gatherings where eating was involved. I noticed too that she had a marked jerking of the neck muscles from time to time and an exaggerated blink * although she mentioned neither. Connie was fifteen when her father left the family home and remarried. His new wife did not welcome his children, so their telephone contact with him was limited and strained. Her mother had also remarried. At fifteen Connie began to form relationships with older (usually married) men who used her sexually. When we met she had lived alone in her own home for seven years. Her two older brothers lived locally but she had limited contact with them. Connie had told me that her family used her when they needed something to be done and that she received very little in return. I needed to stay aware that I did not do the same. On first meeting
back in 1991
Connie was very guarded when we first met and she tested me at every level until a safe and trusting relationship was established. During our research conversation she told me I was really, really frightened, I sat out, up the road for ages before I came in to see you. I couldnt get out quick enough either. It was obvious from that meeting that Connie needed to feel she had choices, so we contracted initially to work weekly for 6 sessions. Within that period I asked her when she had first noticed the problem with swallowing and she told me it had started when she was about 7 or 8 years old. I then said: I wonder what
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choose to talk about her facial and neck tics and eventually I introduced them tentatively into the conversation, not knowing if she was aware of them herself. She seemed relieved that I had provided her with this opportunity and said she was deeply embarrassed by them and worried about what people thought of her. But she did not stay with this focus for long. From time to time the tics were less marked and the eating was a little improved but nevertheless, after six years, Connie ended her therapy with both her eating problem and tics intact, although many other aspects of her life had improved. Our work had focussed on how the abuse had affected her intimate relationships and her relationships with family and friends; her ways of coping with the world; and her tendency to dissociate. Our relationship had become close over so many years and during our research conversation she commented on this: Years before I met you Id seen a psychiatrist . . . and it was very clinical * and that was a man * yeah of course that was a man, Ive just realised that, and there he is, sitting in his office and . . . he never looked up, he just asked me questions, write it down, write it down, write it down, write it down, [and then said] theres nothing wrong with you. Then I saw you and it was a different approach . . . it was a personal approach rather than being . . . I know it was your job but it was obvious from early on that it wasnt just a job to you. Whoever you were seeing it was more, more than that . . . our relationship was more important than the work we were doing . . . Connie seemed to have a new realisation as she spoke, that the gender of her psychiatrist was relevant to her experience with him * possibly indicating new insight about his shared gender with her abuser. During our relationship I had often been aware of wanting to mother her, and we spoke often about her attachment to me and how this awoke the pain of realising how little nurture she had received as a child. I felt that Connie needed to let go of me if she was to form intimate, loving relationships out in her world. I had been encouraging her to make connections with others. Her relationship with her family had improved, although she did not want to tell them about the abuse or share her intimate self with them. At different stages I referred her to: a hypnotherapist to learn relaxation techniques; a newly forming therapy group (which did not recruit enough members to run); and a body therapist with whom she continued to work after therapy with me had ended. Naming Tourettes syndrome Halfway through our research conversation Connie began to talk about her two weeks of breakdown and how much her therapy had helped her to cope with that. I asked how she thought therapy had helped.
it was that was hard for you to swallow when you were that age. She shrugged her shoulders and let my question pass. The following session she told me that her older brothers friend had raped her orally between the ages of 7 and 12 * something she had always remembered * and that it wasnt really relevant to her present problem. My theoretical understandings of her presenting problem In looking back to my theoretical understandings at that time I believed that Connie had dissociated aspects of her abuse in order to survive them, and that her body was still carrying unprocessed and disconnected emotions that were being expressed indirectly by her body. Her symptoms were therefore defending her from the risk of making those connections by causing her to avoid activities (such as eating in exposed places) that might risk triggering emotions that threatened to overwhelm her. She had a clear cognitive memory of the abuse but spoke about it without affect. It was just one of those things, she shrugged. My theoretical beliefs were also informed by the BASK model of dissociation proposed by Braun (1988a, 1988b), a model conceptualised along four dimensions of experience: behaviour, affect (emotion), sensation (body feeling) and knowledge (cognition). Braun suggests that we need to listen to a clients story in an attempt to discover which of these four aspects of experience are missing. However, we can know and not know about betrayal at the same time. A survivor who represses sexual abuse may simultaneously have memory and knowledge of events that surface in other ways, such as specific phobias, learned behaviours, or self-perceptions of being bad. Sometimes, Braun suggests, there is a combination of sensory and body clues that occur without knowledge of the source * referred to as body memories. Connie knew cognitively about her rapes, her body seemed to be living out the disgust, fear, shame, humiliation when trying to eat in public, but she neither felt nor expressed emotion as she spoke of those experiences. Additionally, I was influenced by Reichs teaching (1951) that people develop muscular armouring during childhood in order to avoid painful emotions: this, I believed, caused the neck and facial tics. Reich thought this armour may serve a useful purpose during childhood, but its persistence into adulthood blocks the natural flow of energy, limiting the capacity for pleasure. He believed that the loosening of tension in the muscles would release the emotions contained within them and relieve the body of its defensive task. Our therapeutic relationship As the work progressed and our relationship was established, I began to wonder if Connie would ever
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Kim: . . . you feel as if it has cut you off from . . . Connie: Yeah, I do, and I think itll always be, its cut me off in as much as erm . . . I think it cut me off in as much as I wont have my own family. Kim: Why wont you? Connie: Well I wont now because Ive got Tourettes and its hereditary. and I wouldnt put that on another child. But before, I didnt know that, so if I hadnt have been abused by him I probably would have had a relationship and had kids and they may have got it, they may not have got it, but I wouldnt have been aware of it. I noticed a tug on my heartstrings as she talked about this, feeling sadness at her loss. I am aware how often people who have been abused are fearful of becoming parents because of the myth that people who have been abused always become abusers, based on research findings that use clinical and offender samples and therefore produce biased results. My next question seems like an attempt to rationalise my feelings and challenge her thinking: Kim: Mmm. Tourettes isnt necessarily hereditary is it? Your brothers havent got it? Connie: Yeah, they have. Yeah, my brother, he stutters and he blinks. My other brother, I dont think hes got it, but then I noticed . . . It was really strange, I mean my auntie was over here a couple of weeks ago and I was just suddenly watching and I thought: my God, youre doing it as well and Id never, ever noticed. Kim: Have you talked to the family about the Tourettes Connie: No. Kim: Why ever not? Connie: I dont know, I dont know. [quietly] I wondered if her sense of shame and stigma relating to the Tourettes has silenced her in the same way as she had been silenced by the abuse. Her inability to control her body, both in relation to the tics and during the abuse seems to cause Connie to try to control herself (and others) in many aspects of her life, often presenting herself with a tough, slightly aggressive stance towards the world. And later Several months after this conversation, on re-reading the transcript I emailed Connie to clarify some of my confusion:
them. Maybe that is why . . . I used to look like I wasnt really paying attention a lot of time because I was so busy trying to control them, you know, which is what Ive done all through my life, and I still do now. I think . . . you instilled in me (and I didnt really take it on board), how much I was worth . . . as a person. I dont know how to explain it. [pause] I suppose that must have just gone so deep in me that whether I realised or not . . . but after Id been diagnosed I suddenly thought: Yeah, Im no different to anyone else, I am worth the same as everybody . . . Kim: Mmm, youre still a valuable human being. Connie: . . . Exactly, its just that theres a bit of a problem. The way to look at it is: if Id had one arm, people would have accepted that, they would say: Aah, thats a shame [sympathetically]. But they would have accepted it because it was a physical disability. But because this is like a mental disability, in as much as its controlled by chemicals in your brain, people dont really accept it. But its almost like Ive had a clear out * Ive erm . . . discarded a lot of people who arent accepting, people who are judgemental. And my attitude towards people has changed a lot as well. Now I mix with people who . . . just see life for what it is really, and are genuine people who want to help people as well, you know. I asked her whether or not the abuse still impacted on her life and her reply seemed to indicate that having a Tourettes diagnosis enabled her to let go of some of the anger towards her abuser (if he wasnt to blame for her tics), and to recognise the losses in her life: Connie: I think Ive accepted it [the abuse] more now for what it was and I do get angry still, but I can see why I get angry and I, erm, it doesnt frighten me at all but I now feel erm, oh whats the word, I feel like theres like an emptiness there now that, its almost like he stole something, I can see now that he stole something from me. Kim: And what would be in that empty place if he hadnt done that, do you imagine? Connie: Er . . . [pause] I dont know [quietly], a nurturing, loving sort of feeling, do you know what I mean? I feel because, because of his actions Ive cut myself off from so many things that . . . thats what hurts, because I can now see that Ive done that. I also feel angry because nothing was done at the time, but on the other hand I can see that because of the . . . the era that it happened, nothing would have been done. If it had happened now, you know, it would have been pounced on and maybe I wouldnt have suffered the way I did.
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abuse. The growth of feminism during the late sixties and seventies contributed a great deal to our understanding. So what might our work have looked like in 1991 had she arrived with a diagnosis of Tourettes? Would we have focused more on her tics if shed had a name to give them and an understanding of them that carried less shame? Would she then have talked about the abuse? And if not, how might her life have unfolded differently? We can never know the answers to these questions because that was how it was. Finally Connies ideas about the relationship between the eating difficulty and her abuse echo my own thinking about this now. I believe that when a child becomes overwhelmed by trauma, they might disconnect from aspects of the experience in order to survive: the child might have little or no awareness of the body as a physical state and emotions may not be expressed directly. However, the body continues to respond to the emotion, even though the mind refuses to acknowledge it (Dubovsky, 1997, p. 47). When we have no language, we may use the body as a way of protecting ourselves from connecting with the pain of trauma. The means by which we survive childhood may be carried into adulthood and the physical disease might take over and develop a troublesome life of its own that consumes our attention and distracts us from parts of our stories that feel too unsafe. However, my beliefs about Connies Tourettes are more difficult to ascertain. Neurobiology teaches us that trauma can create changes in the brain * changes that may impact on behaviours or body movements * there is also increasing evidence that Tourettes is caused by an inherited gene. We know too that trauma and abuse can create changes in the brain (Goleman, 1996; Rothschild, 2000). The tensions carried within a little girls body as a result of repeated oral rape will undoubtedly affect the childs body in ways that we may not yet fully understand. In this paper I have tried to show how difficult it can be to disentangle the effects of childhood sexual abuse and a physical condition, and how easy it can be for us to become caught up, and sometimes perhaps distracted, by theories, rather than staying with the clients own stories. I have presented my conversation with Connie to draw attention to a clients view of these issues, using her stories to help us understand the layers of complexity and ambiguity that are contained within them. With all of this in mind I do not seek to end this paper with conclusions or recommendations, but rather to finish with an ongoing sense of uncertainty and further questions that may never be answered. And for me, this is good enough for now.
How difficult it can be to disentangle the effects of childhood sexual abuse and a physical condition How easy it can be for us to become caught up by theories, rather than staying with the clients own stories
her sense of self and identity. Without a diagnosis she was unable to explain her behaviour to others, or even to speak of it. Bruner (1986) says that when we have no frame of reference for our experiences, we cannot understand them: when we do not understand what we are experiencing we are helpless to communicate it to others. In the absence of any other explanation Connie had constructed for herself an identity as freak. The parallels between experiences of sexual abuse * and a childs inability to speak of it * and her experience of Tourettes are clear. In his seminal work on managing spoiled identity Goffman (1963) writes of the sense of shame a disabled child experiences that can prevent them accepting or adapting to their disability. Fearing rejection or humiliation the child tries to hide their disability and pass as normal but the strain of hiding can create a sense of isolation and alienation, and feelings of inferiority, all of which could predispose the child to exploitation and abuse by seeking connection with, approval or attention from untrustworthy others. The same sense of shame, fear of rejection, isolation and alienation can be seen in children who are abused (Meares, 2000). I wonder how I might work with Connie if she came to me today. Although my recent work has taken me further into understanding how childhood trauma effects the body in a variety of ways (Etherington, 2003) my practice has moved more and more towards viewing theories as socially constructed narratives created from stocks of knowledge available at the time. So I hold theories lightly, working from a sense of not knowing (as far as that is possible) and working with the persons sense of identity, not as a determined entity that can therefore be damaged or spoiled, but rather as something that is constantly reconstructed and shaped by the stories we tell, and that are told to and about us, within our personal and societal context. Connie was born in 1963. As she rightly says, had she been born now perhaps her diagnosis would have been made earlier. Once something has been named we can recognise it for what it is, words enter into consciousness and help us shape experience and create a language through which we can understand and be understood. Once we have the language, our stories can be told. The same applied to our knowledge of, and ability to name abuse. Connies abuse occurred in the very early seventies when relatively little was known about the effects of childhood sexual