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Chapter 1
Living with a rheumatic disease: the personal perspective
Lynne Goodacre1 and Margaret McArthur2
1Lancaster University, Lancaster, United Kingdom; 2University of East Anglia, Norfolk, United Kingdom
1.1 Introduction
Attention to human suffering means attention to stories, for the ill and their healers have many stories to tellâŚ. The need to narrate the strange experience of illness is part of the very human need to be understood by others, to be in communication even if from the margins (Mattingly 1998, p. 1).
The aim of this chapter is to ensure that your focus is, from the outset, on the personal experience of living with a rheumatic condition illustrated by composite narratives informed by the many personal stories we have listened to and collected in the Âconduct of our research. We are conscious that in adopting this approach, we depart from the traditional structure of many clinical textbooks which usually start with an overview of the aetiology, pathology and clinical management of impairments. However, as suggested by Frank, ânot all stories are equal. The story of illness that trumps all ÂothersâŚis the medical narrativeâ (1995, p. 5). In a clinical textbook, it is easy for the clinical/medical narrative to dominate, and even though occupational therapy Âpractice is informed by person-centred working, the voice of the person is often lost within the clinical story.
As occupational therapists who have worked clinically in rheumatology before Âmoving into research, we are struck by the different narratives we hear when undertaking research to those we heard within our daily clinical practice. As researchers, we are alert to the emerging stories shared with us and those we work with are more obviously aware of their role as storyteller. Within our therapeutic encounters, some of these Âstories are unconscious revelations which still require due care and attention as Âhighlighted by the following example. On a project looking at the social interaction of the client/Âpractitioner relationship, there was an observation of a health professional taking the initial history of a woman who was being admitted to an inpatient rheumatology unit:
Interviewer, I; Hattie, H
I: Who is your next of kin?
H: Not my eldest daughter, she done my husbandâs funeral. She gets so terrible upset so she canât take no more.
I requests the name, address and telephone number of Hattieâs younger daughter and it is supplied.
I: Would she be there at night if we ever needed to contact her?
H: They wouldnât have to get in touch with her would they?
I: No, itâs only if there was an emergency, we need to have someone we can contact.
H: Because I donât get on with her husband you see.
I: No, itâs only if there was an emergency.
âHattie, 65 years, rheumatoid arthritis (RA)
Thus it is that in an effort to find out a factual piece of information (a contact Âtelephone number), this person revealed information about:
- the death of her husband,
- problems experienced by her elder daughter and
- relationship problems with her son-in-law.
These issues were not acknowledged nor was an explanation given about what would constitute an emergency within the ward setting; however, the example serves to illustrate the centrality of narrative in our lives. Similarly, working alongside a client and asking a straightforward question can reveal how seemingly ordinary people have many stories to tell (Box 1.1).
Changes in healthcare delivery mean that there are far fewer opportunities for Âstories to be revealed in everyday therapeutic encounters. In a personâs home, not necessarily being known as a healthcare professional, with more time to listen and a focus on understanding an experience as opposed to obtaining clinically relevant information, a different story is told that we wish to give voice to.
Narratives are described as collections of âevents, experiences and perceptions that are put together into a meaningful whole and understood/told as a storyâ (Goldstein et al. 2004, p. 119) and, when seen as a component of occupational therapy practice, through their telling, enable therapists to develop a greater understanding of peopleâs worlds and experiences and how their lives are shaped by therapy (Mattingly 1998).
Narratives are constructed for an audience, they are told to people, and the way in which they are constructed and what is told is influenced by the audience. The Âclinical narrative recounted in textbooks is constructed primarily to educate healthcare professionals about the clinical management of rheumatic conditions, which by its nature seeks to address the problems and challenges with which people are faced. Within clinical practice, the personal narrative is often constrained by the structure imposed upon it by the questions posed; it is a guided narrative which seeks to convey specific information within limited time primarily focused on identifying issues to inform clinical interventions. However, these are partial narratives which focus on specific aspects of a personâs life.
Box 1.1
Betty came into the rheumatology inpatient unit, was assessed and treatment aims were established. She had to increase the range of movement and muscle strength of her shoulder, elbow, wrist and hand and improve her precision grip to increase her ability to perform personal care and writing tasks. Using the medium of batik, Betty produced a wall hanging depicting a tranquil scene of a church with a pond with ducks and bulrushes in front and a clear blue sky behind. The task fulfilled the aims of treatment, she gained satisfaction from completing each component part of the task and her function improved.
As part of the small talk that goes on in a treatment session, Betty was asked about her design. She began to talk about her childhood. She had been in Singapore during World War II and had been captured and placed in a camp. She spoke about how desperate life felt for her and how she retreated into her imagination of a scene very much like the picture she had produced in the treatment session. After talking for some time, Betty took stock of what she had been discussing and revealed that she had never told anyone about the image she had used. The aim of the session was to increase shoulder range of movement, increase stamina, and achieve the mindfulness of being absorbed in an activity with a view to increasing functional ability. What emerged as an extra dimension was Bettyâs need to tell her story about her childhood experiences. As Betty had revealed this aspect of her life, it was Âimportant to pursue it, offering other support services to allow her to explore this aspect of her life. On reflection, Betty decided that she felt at ease with the disclosure and had achieved enough by telling her story (Betty, 72 years, RA).
People participate in research for different reasons, but a common thread running through studies we have undertaken is the desire to give voice to an experience to enable others to understand. As suggested by Frank (1995), âstorytelling is for another just as much as it is for oneselfâ. In the reciprocity that is storytelling, the teller offers themselves as guide to the others. The resources listed at the end of this Âchapter illustrate how personal narratives have been used in this way.
When given the time and the opportunity to recount their story with little or no Âstructure being imposed, the personal narrative assumes a different dimension in which illness is located within the much broader context of a personâs life. At the end of Âconducting a research interview, it is common for people to comment that they have never had the opportunity to talk in such detail about their experiences before. The process of telling a story is one of making sense and giving meaning to an experience and has been used by researchers working within the social sciences to give voice to an alternative understanding of the experience of living with and managing long-term conditions, one grounded in personal experience (this work is explored further in Chapter 2).
1.2 Living with a rheumatic condition
The point at which occupational therapists come into contact with people with rheumatic conditions is often at the point in their illness trajectory when they are trying to make sense of what is happening to them. In Chapter 2, we will explore how this process is fundamentally about developing some kind of causal explanation. This is especially relevant to people who are often faced with medical uncertainty about the cause on their illness and seek to find an explanation for what is happening to them (Box 1.2).
Personal narratives also provide insights into how symptoms are labelled and Âcategorised and how complaints are interpreted within a particular context or life Âsituation (Kleinman 1988). For many people, obtaining a diagnosis can take time with symptoms being interpreted in different ways and even doubted by others until a definitive diagnosis is made, whilst others experience a rapid onset of their Âcondition which turns their life upside down (Box 1.3).
Box 1.2
I work as a warehouse manager and have probably had AS for about 15 years or so but itâs hard to tell really. Itâs only been diagnosed in the last 2 years. Iâve had back pain and pain in my neck and shoulders for years. At the time I put it down to the lifting and carrying I did at work and all the sport I played. I went to the doctors several times and was told Iâd got a bit of lumber pain and to just get on with it basically so I put up with the pain on and off for years (Keith, 37 years, ankylosing spondylitis (AS)).
I keep trying to work out why it started when it did, as no one else in my family has it. All sorts of things go through your head. I remember having really bad flu and not really getting better very quickly but I canât really think of anything. Mum and dad hadnât been so good at the time and were needing a lot of support, and I was under a lot of stress trying to juggle looking after them and the family and my work; they say stress can be a cause donât they? (Sarah, 41 years, RA).
I have been a primary school teacher for 25 years. I hadnât been feeling well but thought it was because of the busy run up to Christmas. When I didnât feel any better after the Christmas holidays, I thought I had better see my GP. I am not sure he believed me at the start, probably thought âoh hereâs another woman with a bit of a midlife crisisâ. The back of my neck ached and felt stiff and it spread to my arms, hands and down my back; even my ribs and hips ache sometimes. I went to bed feeling tired and woke up even worse. The more tired I got, the worse the pain became. I started getting a lot of headaches and thought it might be Âeyestrain, so I went to the opticians but she said my eyes were good for my age! (Gemma, 50 years, fibromyalgia (FM)).
Box 1.3
About 2 years ago I got back pain which came on pretty quickly and didnât go away, and I just felt ill. Eventually, I went to my doctorâs and she did an x-ray, but nothing showed up. Then she sent me for an MRI scan and I saw another doctor who told me it was ankylosing spondylitis. It was a relief after all these years to actually give it a name and know that something can be done (Keith, 37 years, AS).
At various points in time they have played with diagnoses of chronic fatigue syndrome, RA, lupus, depression and just back pain. My doctor did a load of t...
