We will first explore the two aspects of ‘care’ discussed by people with chronic widespread pain and their families – practical care/support and emotional care/support – both of which are considered to be key elements of the activity of ‘caring’ (Twigg and Atkin 1994: 8). Despite a substantial body of work in the area of ‘care’ and ‘social support’, neither concept is clearly defined (see Thomas 1993, on care, and Williams, Barclay and Schmied 2004, on social support). In fact, Williams et al. (2004) argue that a generic definition of social support is neither possible nor useful and that the concept should be defined contextually, based on the meaning given by the people to whom it relates. We therefore examine the experience and meaning of first, practical support, and second, emotional support, for people with chronic widespread pain in the context of their families, and for their families. We explore the forms that this support takes and the factors influencing its ‘delivery’, before going on to look at other issues in the provision of emotional support.
In dealing with chronic widespread pain the support is not directly involved with the body, but with the implications stemming from the body's actual or potential failure and from the identity changes arising from bodily changes. This can be contrasted with other chronic illnesses, in which bodily care is seen as a major type of ‘informal care’ provided by families (Boeije et al. 2003, Kelly and Field 1996).
One element of support in the context of the body with chronic widespread pain is that of anticipating and averting possibilities, rather than direct provision of practical support4. This includes vigilance about the physical environment at home and also extends to activities outside the home, where families cope with the unpredictability of the pain and consequent fear of the person falling by physically accompanying the person, as described by Natalie's husband:
Jeffrey: I go shopping, I don't like you going shopping. I don't like her going shopping on her own. Sometimes she does. If I am on nights, but that is the only time, probably you go with your mum or Georgina any way, you don't go on your own.
Natalie: It's not often I go completely on my own.
Int: What is it you don't like about it?
Jeffrey: I don't know, her hands could go any minute. It's just unpredictable sometimes, isn't it? [Interview with Jeffrey – Natalie's husband, and Natalie]
Although Jeffrey is not always able to accompany his wife outside the home, he fulfils the role of ‘protective spouse’ through ensuring that somebody accompanies Natalie. For the families in this study it was not considered necessary for the person with chronic widespread pain to be accompanied at all times. This was used as a preventive measure outside the home and in response to the day-to-day needs of a person, according to his or her pain. The day-to-day uncertainty of pain means that this support needs to be given on a flexible and responsive basis, determined by whether a day is a ‘good day’ or a ‘bad day’ (see also Charmaz 1991). This is determined by evaluation of pain levels on that day, or on how controllable the pain is, through a person's knowledge of their body, which in turn determines what activities can be carried out.
This unpredictable and fluctuating nature of pain is also presented by sufferers and their families as a key determinant of provision of practical support to help the person with chronic widespread pain maintain responsibility for household tasks. All the participants in this study with chronic widespread pain have responsibility for everyday household tasks, such as ironing, cleaning and cooking. A reversal of traditional domestic roles undertaken by Michael and his wife, Duncan and his wife, and the sharing of tasks by Harry and Carol, has led to those three men taking on responsibility for household tasks. In addition, Natalie, Val, Sue and Trevor have continued with household responsibilities that they had prior to their pain onset. Domestic or household chores are considered to be one element of providing physical care or support in the context of ‘caring’ for people with disabilities (Twigg and Atkin 1994: 36). If, however, we consider this element of care reciprocally, then the major part of care in and for the households in this study is carried out by a person with chronic widespread pain, in the form of domestic or household chores. Other studies in this area suggest that ability to carry out household tasks varies with the nature of the illness or pain (see Boeije et al. 2003, Dyck 1995, Ewan et al. 1991, Henriksson 1995a, 1995b, Paulson et al. 2003, Reynolds and Prior 2003).
Flexible response is evident in descriptions of how household tasks within the home are managed, whereby tasks may be finished by another person, or parts of tasks that are impossible are taken over:
She can't do all the housework all the time. She tries to do as much as she can. Everybody helps out by doing the dishes and ironing. She tries to do as much as she can, she has a rest every afternoon for about half an hour, she doesn't push herself. [Interview with Georgina – Natalie's daughter].
The way in which the tasks are described indicates that the responsibility for them lies with the person with chronic widespread pain, for example, Georgina's phrase ‘helps out’. Her statement that Natalie ‘can't do all the housework all the time’, suggests that this would be a desired situation for Natalie. The unpredictability of the pain highlights a disjunction between preferred identity and actual identity, with the support of the family helping to minimise the gap. This finding echoes that of Söderberg and Lundman (2001), who found that the women in their study maintained their responsibility for housework but needed help to manage it, thus simultaneously changing the form, and maintaining the essence of, their role in the family. Family support involves responding to the day-to-day unpredictability of the sufferer's pain, rather than completely taking over their activities. This reflects findings from studies of other conditions in which symptoms fluctuate (for example, fibromyalgia; Paulson et al. 2003).
The second factor mediating the provision of practical support is that of the roles and responsibilities of other family members, which shape when support is given and in what form, as Georgina describes:
Some days when I don't, because I have like half-days at college, so when I have a half-day at college, I come home, I do the ironing depending on how mum is, I hoover up and dust. On a Thursday afternoon we go shopping. It is my step-dad who takes me to work because the car isn't power steering and she can't drive all the time. Just help whenever I can when I am not at college or not at work. My step-dad does as well. [Interview with Georgina – Natalie's daughter].
For Natalie, support from her family fits in with her husband's shift work, her daughter's college work and her daughter's part-time job. From the description above, it appears that Georgina's and her stepfather's responsibilities take precedence over the unpredictability of Natalie's pain in determining the provision and management of support for her mother: Georgina's spare time is used to support Natalie in carrying out household tasks. Interpreted within Goffman's (1971) framework of illness as posing a threat to social norms of conduct, this can be seen as a way of displaying the normality of the family, and containing the illness, in that it does not impact on other family members’ responsibilities.
Similarly, for Duncan, his responsibility for household chores is eased during the times when his wife and daughters are at home to help. He uses the phrase ‘they've [daughters]always been very helpful to me in the home’, indicating how his family support him in carrying out his responsibilities, but also perhaps illustrating his symbolic control as head of the house. Becky, his wife, describes how she manipulates the time she takes to do household chores in order to protect Duncan's identity as competent in this arena:
I think he gets frustrated because he can't do things as quickly as I can. He’ll hoover a room, that is it for the day, whereas I hoover the whole house in half a day. I am very much aware of that fact. He does find it frustrating and I do tend to slow down on odd things I'm doing when I'm off for the day, thinking, ‘Well it would be rubbing it in a bit if I whiz through the house in half a day, whereas it would take him a week to do’. I am aware of that. [Interview with Becky – Duncan's wife].
Both the allocation and execution of tasks contribute to maintaining Duncan's identity as responsible for household tasks. The symbolic function of carrying out physical tasks which are not normally part of one's duties is suggested by Goffman (1971) to be a form of compensation by the ‘patient’, for the physical tasks they cannot complete, and also a demonstration of their understanding of what a ‘normal’ person does and their desire to be that ‘normal’ person. Thus, for Duncan, retaining his role as head of the household, through taking on household chores, reduces any threat to the ‘normative order’ of the family (Goffman 1971). In the case of chronic conditions, this symbolic function may also apply to continuation with physical tasks (not just to the taking on of different ones): Natalie maintains her role as caring wife, mother and daughter through continuation with responsibilities associated with these roles, albeit with the help of her family.
Chronic widespread pain and family responsibilities interact with each other and the management of one cannot easily be separated from the other. In the following extract Natalie suggests that her father could be a source of support for her, because of his own arthritis, but she feels unable to fully use that support, because of her parents’ own need for support from her. Elsewhere in her interviews, Natalie describes herself as very close to her parents, but also identifies worry about them as a trigger for her pain. The situation is complicated by her father's perception of her pain as hereditary and thus his feeling partly responsible for it. Natalie therefore has both to provide practical support and to carry out emotion work with her father:
In my family, my mum and dad are so close to me and I'm the only one of the children, there's four of us, but I'm the only one that doesn't work, so me mum has had a hip operation last year, so she doesn't drive very much. Dad at the moment is too poorly anyway, so I feel as though, I drive for them, you know, and I feel they have got enough going on in their, you know, lives without me moaning about how I feel. My brothers and sisters, they all work and they have got enough going on with their lives. You know it's, I don't know. So I mean, I do talk to my mum and dad about it because my dad has arthritis, and he understands but other than Jeffrey, nobody else really. [Natalie follow-up to lifegrid interview].
Natalie's account suggests a hierarchy of responsibilities in determining who provides the care for her parents. Her siblings’ work and the fact that Natalie does not work appear to take precedence over her chronic widespread pain in determining what share of the care she accepts for her parents. The precedence of paid work over not working means that Natalie's pain is not taken proper account of. Natalie may also not see, or not want her pain to be seen as, a legitimate excuse for not providing care for her parents. She is maintaining her identity as a ‘caring daughter’ through providing support for her parents. There are also expectations connected to gender in that women are more likely than men to provide personal care for relatives and brothers more likely to be excused care responsibilities than sisters (Finch 1989).
Natalie manages to support her parents through help from Georgina. As with household responsibilities, the support is flexible depending on Natalie's condition, with Georgina either supporting Natalie or taking over from her. Natalie and Georgina are part of a broader pattern of support spanning three generations, a pattern in which grandchildren, and particularly granddaughters, are seen as a possible source of support for the elderly, although little is known about the circumstances in which grandchildren might take on responsibility for care of their grandparents (Finch 1989). This example suggests that such a circumstance might be the unpredictable illness of the caring daughter, which leads to the granddaughter taking on some responsibility for support of her grandparents. Support may have been provided previously by wider family, when circumstances were different. Natalie describes how her mother used to do her housework twice a week for her, when she was first unwell. The fact that Natalie's condition is now less severe than it was then, together with her mother being less capable of providing that kind of help, mean that the support is not provided any more. Finch (1989) refers to the notion of generalised reciprocity, where exchange does not need to be reciprocated immediately, but is based on a longer-term view of reciprocity. This is characteristic of relationships between parents and children over the lifecourse, and also between husbands and wives (Finch 1989). She suggests that ‘normative guidelines’ exist, governing when is the ‘proper time’ for obligations to be fulfilled. Divorce provides an example of an event that may breach these guidelines in possibly returning adult children to a (temporary) state of dependency upon their parents. In this sense chronic widespread pain for someone like Natalie could also be said to change these guidelines in that it led to her mother providing support, through housework, for her, during a time of severe pain. However, a mother providing support for her daughter through childcare at a similar life stage would be considered ‘normal’ (Finch 1989), suggesting that the nature of the support provided is important. The reliance of an adult child on a parent for support disrupts the balance between dependence and independence. The unpredictable and phase-like nature of Natalie's illness suggests that there is a threshold of ‘incapacity’, which in the past has triggered her mother's support, and, now, mediates her responsibility as a daughter for providing support and legitimises Georgina's assistance. Thus the support provided by family members is seen to be mediated by the illness trajectory, by the biography of the person with chronic widespread pain and by the biography of the person providing support.
Providing practical support for people with chronic widespread pain is about helping to maintain identity and independence. The type of support described above is similar to that described by Miller and Timson (2004) in the context of low back pain. The ‘carers’ in their study did not identify themselves as such, seeing their role as peripheral rather than central, in providing a ‘helping hand’ and support. In the context of the role played by families of those with chronic widespread pain, practical support in the way we have described it is central to caring. The key features of practical support in our study were its flexible and responsive nature, which could take into account both the needs of the person with pain and the responsibilities of those providing it. The practical support described above can also be seen as a further example of ‘affirming’ the obligation of family members to ‘care for and protect the others’ and protecting the social roles of family members within the family, thus reducing the threat to the ‘normative order’ of the family (Goffman, 1971: 362).
Emotional support has been conceptualised as the ‘feeling state’ of ‘caring about’ a person, to distinguish it from the ‘activity state’ or practical tasks involved in ‘caring for’ a person (Thomas 1993: 652). Skeggs (1997) makes an additional distinction in proposing that caring for someone can be done without caring about them. Thomas, Morris and Harman (2002) suggest that the concept of ‘emotion work’5, defined as ‘the emotional effort made by individuals to manage their own feelings and those of others’ (2002: 537), is useful when exploring the care provided by informal carers of people with life-threatening illness, such as cancer. In this section we explore the nature of emotional support in the context of chronic widespread pain, in particular its role in providing legitimation, and its reciprocal and dynamic nature; and the factors that affect this support, namely the needs of the person with chronic widespread pain and the characteristics of the provider.
For the participants in this study, family expectations were a key feature of emotional support. Natalie's description of her first husband's unwillingness to recognise her condition or its limitations highlights the importance, for her, of having her experience validated. Her account of the differences between her ex-husband and her present husband illuminate the nature of support that she considers important:
I had never been ill other than I had pneumonia and so even though I got married at 18, I've never really been ill, always worked. Then I turned 30, then ever since it just all happened. At first he [ex-husband] wasn't too bad, then it became more of a pain for him –‘I can't do this’–‘Well I’ll go walking’. Then he started doing things on his own. [ . . . ] I don't think he could understand why I couldn't do what I had done in the past. [ . . . ] I couldn't talk, I felt guilty. I knew if he knew I was bad, like if we had planned to do something and I couldn't do it, then he would be really angry. [ . . . ] Whereas Jeffrey is a completely different kettle of fish, even if he had spent money and everything, he wouldn't be angry at all. That is why I think we talk constantly, even if I got a small – I would say ‘This hurts’. I find I can tell him anything, so I do. I am completely different to how I was, with my ex-husband [Natalie diary interview].
Natalie begins by emphasising her wellness before the illness onset, contrasting this with her inability to carry out activities during the early years of her illness. Natalie emphasises that her ex-husband was not able to offer emotional support and did not behave as though the illness were legitimate, thus denying Natalie entry to the ‘sick role’ (Parsons 1951). In contrast, Jeffrey recognises the validity of her pain and thus legitimates her illness. This illustrates the importance of validation of the family in exempting the ‘ill’ person from their responsibilities, and the tensions created in a family by a person's deviation from their normal role in the case of an ongoing condition.
The skills involved in emotional labour include interpreting the needs of others and responding personally, taking others’ needs into account and being flexible in order to be responsive to these needs (Nettleton 1995, based on James 1989). The contrast between Natalie's ex-husband and present husband can be interpreted according to these skills. Jeffrey is able to maintain flexibility in response to the unpredictability of Natalie's pain. She therefore feels supported and validated in her experience and is able to talk about even the smallest pain, rather than having to hide it. Natalie seems to be making a distinction between a spouse's caring about and caring for a person, with support and understanding being seen as part of the former. The perceived legitimacy of a condition and support or lack of support from a spouse can determine how the person lives with chronic widespread pain.
The following examples illustrate the importance of family expectations, through contrasting descriptions. In the first extract, Duncan gives an example to illustrate how his wider family, particularly his mother, have unrealistic expectations of his ability:
Int: Another thing from your diary was, you mentioned family gatherings, and that you felt that some people in the family didn't quite understand.
Duncan: Oh no, no they don't. My mother is a prime example, god bless her, although she is nearly 80 so, perhaps it is a little bit of careless thought due to her age I suppose. She thinks I can do anything, absolutely anything. If she wanted a, ‘Oh can you come and move this?’ Or, ‘Put me a light bulb in?’‘I can't do that mother, yer know I can't do that, sorry’. She doesn't realize, she expects too much I am afraid (laughs) [Duncan diary interview].
In contrast to Duncan's mother, Michael's father provides support by not asking him to fulfil what might be considered his responsibilities as a son, for example, helping with gardening, illustrating the importance of realistic expectations. The expectations of an adult son by a mother (Duncan's) and by a father (Michael's) are shaped by cultural norms and roles. Not expecting help is bound up with maintaining moral identity, particularly identity as independent (Finch and Mason 1993), which may be more salient for Michael's father than for Duncan's mother. However, expectations are also shaped by proximity to the person with chronic widespread pain, which increases knowledge of their abilities and limitations. Michael's father visits his son's house regularly and may therefore have more awareness of Michael's limitations, in contrast to Duncan's wider family, who, as he suggests, do not understand his condition. This is also linked to the invisibility of his condition: ‘It goes back, to the old scenario that if you have not got a plaster on your leg or something like that, there is nothing wrong with you. I think that is part and parcel of it.’[Duncan diary interview]. In comparison, Duncan's immediate family are aware of his capabilities and tailor their expectations accordingly, as Becky describes:
And Alice in particular, probably because she's older, but our Emily is catching up, she always walks with Duncan, always links his arm. I think she is very much aware of the fact that . . . She is just protective, and they don't expect him to do things that they know he is not capable of, aware of it [Interview with Becky – Duncan's wife].
Expectations are presented as having been learnt through maturity, and also through day-to-day contact with Duncan. The experience of living with a person with chronic widespread pain makes immediate family more aware of that person's limitations, despite the invisible nature of the pain.
Others’ expectations of the person with chronic widespread pain impact on validation or legitimation of their condition. Families do not have unrealistic expectations if they recognise and see the ‘illness’ as valid, as in the case of Michael's father. The legitimation of a condition is necessary to enter the sick role, in terms of this recognition of suffering, and exemption from role responsibilities (Parsons 1951). Glenton (2003) illustrates how, for sufferers of chronic back-pain, the invisibility of their condition contributes to lack of perceived legitimacy and hence difficulty in achieving the sick role, which although it does not describe their experience, remains a salient concept for sufferers and their families, reflecting the ‘social obligations and expectations that are present in the minds of health professionals, colleagues, family members, and back pain sufferers themselves’ (2003: 2245).
In the previous section, practical support was seen to be mediated by the uncertainty of chronic widespread pain, and by the roles and responsibilities of family members. Emotional support is, in turn, shaped by the needs of the person with chronic widespread pain and the skills and preferences of the person providing the support, and it is to this that we now turn.
As might be expected, emotional support is to some extent determined by the needs of the person for whom support is being provided. This is exemplified in the area of communication. Talking about pain appears to be on a continuum for the participants in this study. Natalie (as shown above), describes support in the form of talking as very important. In comparison, Michael, as we shall show below, is at the opposite end of the continuum. Participants’ location on this continuum is not fixed but varies according to those to whom they may be talking, or not talking; for example, Natalie talks to her husband but not to her friends, which she links to wanting to present a particular identity – that of being not ill – to her friends. This strategy of information control is similar to that described by Asbring and Naravanen (2002) in the case of contested conditions (chronic fatigue syndrome and fibromyalgia) and also by the parents in Voysey's (1975) study of children with disabilities, in order to create the desired impression of ‘normal’ family life.
For Michael, family support means being aware of his pain, but recognising and respecting his need to not talk about it, or indeed, acknowledge it. Not offering to help is therefore a logical consequence of the family's tacit acknowledgement of this:
Int: Do you think your family know the extent of the pain?
Michael: Well I think the youngest does. She has been brought up with me being off with it and the wife does and all. She knows how bad it is so she doesn't keep on, which is a good thing[Michael lifegrid interview].
Michael suggests that his family are familiar with the limitations imposed by his pain. His experience is therefore legitimated through realistic expectations. The type of emotional support he requires means that his family do not explicitly acknowledge these limitations, as his wife describes:
Sheila: You can tell sometimes if he has to walk anywhere, you can tell. He can't sometimes get in and out the car, you have to lift his legs to get in and out the car, but he doesn't like you offering to help him (laughs). But no, that is more or less, how he is really, he doesn't say a lot about it.
Int: So would you offer to help him?
Sheila: Yeah, yeah I would but, he doesn't like anybody, like sometimes when he is getting in and out the car sometimes put me hand behind him but he has to really hold on the side of the doors and lift his legs sometimes to get out but he’ll struggle until he does it. [ . . . ] I suppose I want to [help] but I know he doesn't want us to help him so we just wait until he . . . [interrupted by child][Interview with Sheila – Michael's wife].
Sheila's account suggests a confidence in her knowledge of her husband's limitations and also of the type of support that he prefers. Family members reported being able to tell when the person with chronic widespread pain is in pain, through bodily cues such as particular movements, despite pain's invisibility. On the face of it, Sheila's account appears to be about practical support, but it is actually more about emotional support. Sheila uses her knowledge of Michael's limitations and his preferred identity, as independent and proud, to respond accordingly. There is an apparent paradox in providing support through not helping, although the importance of support that does not undermine autonomy has been recognised in other contexts (for example, chronic pelvic pain, Warwick et al. 2004). The recognition of the emotional support or emotion work in this situation is therefore important and this provides further illumination of the skills involved in emotional labour, namely the skill of responding specifically to a person's needs. Sheila is demonstrating these skills and elsewhere illustrates how her daughters are also learning those skills. Söderberg et al. (2003) similarly describe how the husbands of women with fibromyalgia studied their wives’ body language in order to learn to recognise their changing needs. Thus emotional labour is involved in providing the physical support for the person with chronic widespread pain to maintain his or her responsibilities, because it involves interpreting the needs of others, responding personally and maintaining flexibility, which are all key to providing support in the case of uncertainty.
The concept of the ‘dynamic learning process’ (Peolsson, Hydén and Larsson 2000), through which people with pain learn about variations in their pain and use this sensitivity as a resource for handling the pain and carrying out everyday chores, can also be applied to family members of those with chronic widespread pain. Emotional skills can be applied to one's knowledge of a person's bodily limitations and preferred ‘coping style’ to provide appropriate support for the person. Coping style refers to the way people ‘respond to, and present, important features of their illness’ (Bury 1991: 462). Radley (1994) emphasises that this response is context based, and is shaped by the resources available, which include relationships with others. Thus, Michael's style of responding to his chronic widespread pain is shaped by the emotional skills of his family, in recognising his preference for retaining independence. In addition, there is a dialectic between Michael's preferred self and his family's acknowledgement of this preferred self.
Emotional support is also affected by the characteristics of the person providing that support, including their competencies and their relationship with the person with chronic widespread pain.
Lynam (1995) suggests that (in the context of young adults with cancer) not all family members are equally able to provide the type of support needed, because of their different competencies and resources. This is illustrated in the case of Natalie's daughter, Georgina, who finds practical support easier to provide than emotional:
It is quite difficult because sometimes I don't know what to say. She goes a bit, she gets dead stressed up because she can't cope, I just move away a bit, she has a rest then, but it is hard sometimes, because she wants to do things but she can't[Interview with Georgina – Natalie's daughter].
Georgina acknowledges the difficulty in providing emotional support for her mother and her response of ‘moving away a bit’. Lynam (1995) suggests that support may be based on what people can provide in a relationship, with some family members feeling better able to provide some types of support than others. The provision of support can work in a complementary way within the family, thus making it important to recognise the different types of supportive responses or abilities of different family members (Lynam 1995), whether, for example, physical, emotional or practical.
In a further example of this, Sue contrasts the nature of her relationship with her sister with that she has with her husband and how this influences the type of support she receives from each. For emotional support Sue relies on her sister, based on their previous mutually supportive relationship. Sue perceives her husband to be a ‘healthy’ person and therefore feels that he can never fully understand her experience, but she accepts his role as her ‘advocate’ in the context of healthcare. Söderberg et al. (2003) describe this role in husbands of women with fibromyalgia, particularly in the context of getting other people to recognise and thus provide legitimacy for the illness.
This reciprocity of supportive relationships emerged strongly from the interviews in this study, particularly in the context of husbands and wives. Relationships are presented as dynamic partnerships, rather than as between caregiver and care receiver, with each partner's problems taking priority in turn, as described by Duncan:
Oohh, yeah. I couldn't have done it without her. Couldn't have done it without her. No chance. She's first class, best thing I ever did, marrying her, don't tell her though [laughs]. We've just – this is nothing to do with this – we've just found out that her mother's got breast cancer, the other day, so she's a bit low [ . . . ] I go on the back burner for a bit till we get her sorted out, it's her turn to get sorted out now [Duncan follow-up to lifegrid interview].
The type of support described by Duncan could be characterised as a ‘caring partnership’ (Lynam 1995), which implies the mutuality of the caring relationship. In the context of chronic widespread pain the term ‘supportive partnership’ seems to better fit the nature of the caring described by participants. This is not intended to suggest that caring is absent from this partnership, but that ‘caring for’ is not a central part of the relationship. And, of course, ‘caring about’ someone may still be part of the partnership. Duncan is also presenting himself to the interviewer as a ‘good husband’ who is able to maintain his emotional, if not physical, strength.
The dynamic, caring partnership presented by Duncan, above, is based on balancing and negotiating needs within the relationship. The illness of a spouse may threaten to upset the delicate equilibrium, as Val describes:
So I'm not only coping with what I cope with, I have got to cope with him being the way he is. I mean I can cope with it, but it is a worry when you see somebody like that. Plus my quality of life inside these four walls, when he is in. I have to remind him every so often, ‘Alright you feel poorly, but don't take it out on me because I try not to take this out on you’. Although I do get annoyed at times, I try not to be, when they [husband and adult children] walk in this door, I try to be the way I want them [to be]. I want to be not moaning and groaning because I want the pleasant side of them. I don't want to be falling out with them although sometimes it does get to that [Val diary interview].
Val's account expresses the complexity of the emotional work she carries out in her family. She is managing her own condition, plus that of her husband, which, although she feels able to do so, remains a source of worry for her. Val stresses the effort that she puts in to being ‘pleasant’ and not inflicting her condition on her husband but also expresses her desire for him to recognise this and to act in a similar way. Her expectations of her family are based on her way of coping. Similarly, she desires recognition and reciprocity from her family for the emotional work she puts in to managing her expression of her pain. Val is describing here her attempt to balance her needs with those of her husband and family. She is also attempting to maintain her identity as a good wife and good mother who presents a ‘pleasant side’ in order to receive the same in return.
Val's account raises the important issue of negotiation and the balance between implicit and explicit negotiation. Finch (1989) describes the concept of negotiation as a useful way of understanding how family commitments are worked out. Val is requesting that the family ‘do certain things for her’ (Finch 1989: 181) in return for her doing the same for them. In Val's case the reciprocity that she requires as a commitment is not produced through implicit negotiation, therefore she rationalises this possible misunderstanding and uses more explicit tactics in reminding her husband of the reciprocal nature of their commitments. The process of negotiation involves ‘conveying meanings and intentions through gestures, cues and hints’ (Finch 1989: 197), which relatives, through shared concepts and close long-term contact should understand. However, the invisible nature of chronic widespread pain, coupled with the desire neither to talk about it nor to show it, exacerbates the potential for misunderstanding in implicit negotiations within the family.