Experiencing chronic widespread pain in a family context: giving and receiving practical and emotional support

Authors


Address for correspondence: Jane C. Richardson, Primary Care Musculoskeletal Research Centre, Keele University, Keele, Staffs ST5 5BG
e-mail: j.c.richardson@Keele.ac.uk

Abstract

The impact of pain and chronic illness on the family has been documented, but there is little information about living with chronic widespread pain in the context of the family. This article uses data from a qualitative study of the experience of living with chronic widespread pain to examine the experience and meaning of support for people with this condition in the context of their families. It focuses on the varying, dynamic and reciprocal nature of practical and emotional support in the family. Family members may provide support but are also receivers of support from the person with chronic widespread pain. The factors mediating the provision of this support are also explored, including the nature of the pain and the needs of the person with pain, and the roles, responsibilities and characteristics of other family members.

Introduction

Chronic widespread pain does not exist in isolation but in relation to the physical environment, physical activities and different contexts, including the family. The complexities and complications of family life are illuminated and exaggerated by the existence of chronic pain in a family member. Conversely, and additionally, experiencing chronic widespread pain in the context of the family can highlight the complexities of pain and bring its restrictions to the fore.

That chronic illness, including chronic pain, has an impact on the family has been well established in the research literature. This impact includes loss of physical activities with children in the case of back pain (Strunin and Boden, 2004); adverse impact on relationships with spouse (for example, Kuyper and Wester 1998, Öhman and Söderberg 2004); biographical consequences for the family (for example, Kuyper and Wester 1998, Paulson, Norberg and Söderberg 2003); changes in roles and responsibilities (for example, Strunin and Boden 2004); an increased practical burden (for example, Söderberg et al. 2003); and an effect on social life (for example, Miller and Timson 2004, Söderberg et al. 2003). Additionally, the unpredictability of the pain makes planning family activities difficult (Paulson et al. 2003). Although the literature documents the impact of pain and/or chronic illness on the family, there is little information about living with chronic (widespread) pain in the context of the family.

Previous research has explored the impact that ‘caring’ for an ill family member can have on the carer (see, for example, Boeije, Duijnstee and Grypdonck 2003, Cheung and Hocking 2004, for reviews of this literature in relation to multiple sclerosis). Recent studies of caring in chronic illness have begun to view the role of caregiving by a family member as a two-way, negotiated, process (see for example, Boeije et al. 2003, Reynolds 2004) and to explore the more positive aspects of ‘caring’ for those engaged in the activity, in addition to the psychological ‘burden’ or ‘stress’ of caregiving. Hunt (2003), for example, includes esteem, satisfaction and finding meaning as positive concepts in the caregiving experience. Our findings do not concern the psychological impact – positive or negative – of ‘caring’ but rather the reciprocal and complex nature of caring relationships in the family. We explore the different forms of support given to a person with chronic widespread pain and how this support is organised, within the immediate family environment, and also taking account of wider family responsibilities.

The concept of the ‘sick-role’ (Parsons 1951) may also be of relevance to this exploration of relationships in the family in the context of chronic pain. In the case of illness, sick role theory purports that a person can be exempted from their normal role responsibilities, but must express the desire to recover and co-operate with the doctor, in order for this exemption to be legitimated. Whilst the utility of this concept in the context of chronic illness has been the subject of criticism and debate1, it remains an important concept in medical sociology and may also be important as a reflection of the expectations of pain sufferers and their families (Glenton 2003). Goffman points to the importance of examining the ‘meaning of the patient's symptoms for his others’ (1971: 337), outlining the traditional functions which a patient's family is expected to perform to accommodate the temporary needs of the patient, and which serve to maintain the obligations and social roles within the family.

The data in our study support the findings of previous studies on the impact of chronic pain on the family. In this paper, therefore, we focus on other issues in the experience of chronic widespread pain in the family, namely the varying and dynamic nature of practical and emotional support in the family, and the factors mediating the provision of this support. We also explore the way in which participants presented themselves and the chronic pain of a family member in the interview situation.

Methods

This study takes an interpretative approach, focusing on the meanings and interpretations of participants, who are considered as active agents in managing and responding to illness (see Bury 1991), and exploring individuals’ experiences in a social context. It also draws on a narrative approach, in the sense of using the stories told by research participants to explore various aspects of chronic widespread pain in their everyday lives, but within the context of the cautions raised by Bury (2001) and Atkinson (1997), among others. Bury, for example, emphasises that the analysis of narrative forms should not take precedence over the ‘everyday and mundane dimensions of experience’ (2001: 272). The practical management of everyday tasks is central to the experience of chronic widespread pain in the context of the family.

Participants

The participants were selected from responders to The General Health Survey (a previous community-based survey of adults carried out in 1995 by the Primary Care Sciences Research Centre, Keele University, in conjunction with a general practitioners’ surgery in Stoke-on-Trent) who had agreed to further contact. All eight participants (four men and four women) had pain which was chronic (had lasted for at least three months) and widespread (occurring in the axial skeleton, including low back, above and below the waist and in contralateral limbs (Macfarlane et al. 1996)). Participants ranged in age from 40–60. All except one had stopped work because of their health. Participants’ previous paid work included heavy manual work, community care, police, work in the pottery industry, teaching, mining, railway work and warehouse work. Further details of the family circumstances of participants are given below (Table 1).

Table 1. Family responsibilities of study participants
PseudonymAge at interviewSpouseChildrenWider family (mentioned in interview)
Duncan50wife (works)1 at home/university, 1 awaymother (in care home, unwell); mother-in-law (unwell)
Eileen57singleNonenone
Harry53wife (redundant)1 at home (college)none mentioned
Michael56wife (works)1 at home (school), 1 at universityfather (nearby); sister
Natalie40husband (works, recently unwell)1 at home (college)parents (nearby), unwell; sister; husband's mother and siblings; step-children
Sue46husband (works)1 adult with own children, 1 adult at home (with schizophrenia)sister (recently lost baby)
Trevor58divorced1 no contactmother (lives with him, unwell)
Val54husband (works, recently unwell)2 in 30s at home (both working; one recently unwell)parents (nearby, unwell); sister-in-law

Data generation

A combination of data generation methods was used, centred on serial in-depth interviews, which enable process or change (or indeed stability) to be highlighted; trust to be built (Charmaz 1999); and a deeper understanding to be gained of ‘the meaning which informants’ attribute to certain events’ (Elliott 1997: para 4.14) (see also Backett 1990, Conrad 1990 on the importance of multiple interviews).

Each participant was interviewed (by JR) on three occasions over a period of two to four months: first, using a lifegrid; secondly, a follow-up to the lifegrid interview; and thirdly, an interview based on an unstructured diary, which seven participants completed. Five family members of participants (four spouses and one daughter) were interviewed, after being approached via the person with chronic widespread pain.

Lifegrids (Parry, Thomson and Fowkes 1999) provide one way to obtain information on participants’ lifecourses and enable the creation of a ‘diagrammatic chronology’ of a participant's life (Minichiello et al. 1995: 87).2 A lifegrid enables the illness experience to be incorporated into the life story (see Mathieson 1999) and takes into account Radley's (1999) assertion that illness does not just impact on the areas of a person's life, but is experienced there. Lifegrids offer a number of benefits for qualitative interviewing on health; for example, enabling participants to control the pace and structure of the interview (see Parry et al. 1999, for a full description of the benefits). Diaries were useful for revealing the mundane daily activity of dealing with bodies in pain, an important and under-researched area in the study of chronic illness and chronic pain (Bury 2001, Kelly and Field 1996, Lawton 2003). Elliott (1997) suggests that diaries are valuable for recording everyday processes, for exploring contexts within which illness is experienced and for reducing the anxiety involved in talking about illness, thus making them particularly suitable for participants with chronic widespread pain. Diary interviews meant that topics which arose in diaries could be explored further.

Ethical approval was obtained from North Staffordshire Local Research Ethics Committee. Participants gave written consent for each interview, re-affirmed at the end of the interview. This fits with BSA guidelines (2002) suggesting that consent may need to be regarded as a process rather than an event and hence subject to renegotiation. Participants are identified by pseudonyms.

Data management and analysis

All tapes and diaries were transcribed fully and NVivo 1.3 (QSR 2000) used to manage the data. The analysis was a combination of the thematic and the narrative. It has become commonplace to suggest that people with illness tell stories and that a narrative approach to a whole account is therefore appropriate. However, we agree with Hooper and Ong's (2005) assertion that participants sometimes simply answer questions, at other times they use stories as part of an explanation, and sometimes they tell ‘rich stories that encompass many areas of discussion’. It has also been suggested that participants move between narrative genres, and also between narrative and other ways of telling of their experiences (Riessman 1990). Our analysis of accounts moved from examining, for example, specific words used by people to describe their pain, to exploring their accounts in terms of their reflections on wider society. We therefore attempted to use analytical methods appropriate to the different material generated by participants.3

Results

The table below provides the context for this article, showing the immediate and wider family responsibilities of participants (‘immediate family’ refers to family living in the same household, and ‘wider family’ to other relatives who do not live in the household). All participants except Harry and Eileen have some degree of responsibility of care for elderly and/or ill relatives. Having these caring responsibilities at this stage of life would be expected, given the age of these people with chronic widespread pain.

In this article we focus primarily on Natalie in order to illustrate the contextual nature of support, but also draw on data from other participants to support our argument. As can be seen in Table 1, Natalie has a complex set of family responsibilities, including outside the immediate family and extending not just upwards – to her parents – but also downwards – to her husband's children. These responsibilities, while complex, are not unusual in someone of Natalie's age, and illustrate experiences described by other participants.

Natalie worked in various secretarial jobs, community work and as a hospital phlebotomist, before stopping working almost 10 years earlier because of ill health. She lives with her second husband, Jeffrey, to whom she has been married for three years, and her 17-year-old daughter, Georgina, both of whom took part in interviews. Natalie sees her parents daily. Her father uses a wheelchair due to arthritis and has numerous other health problems, including a recent cancer ‘scare’, and her mother is ‘unwell’. Jeffrey's two children, aged nine and 11, from his first marriage, visit frequently. Jeffrey sums up their everyday life as a family:

I am not here half the time, I am at work. I work shifts, so she really just sees me just before I go to work, and after I come home. I have to work two weekends out of three, then there is my children, I see them three or four times a week. Natalie fetches them from school, stop the night, Friday night. [To Natalie:] They know you’re bad. It's like a big family when we’re all here, running around, ‘I want a drink, get me a drink’, ‘I want to watch the telly’, ‘I want watch this’. [Interview with Jeffrey – Natalie's husband, and Natalie].

Giving and receiving care and support in a family context

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.

Practical 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

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.

Discussion

Space does not allow us here to examine the ethical and practical issues in interviewing family members in depth, although it was a topic explored in the research; nevertheless, it is worth describing this in the context of Natalie's family. As would be expected, the person without chronic widespread pain saw the interviews as an opportunity to tell their story and to discuss the impact of their family member's pain on them. In addition, partners, or children, saw it as an opportunity to present themselves as supporting their spouse or parent. However, in the case of Natalie's husband, Jeffrey, he perceived the interview with him as a questioning of his support of Natalie: for example, when asked which parts of the illness had been difficult in coping with he replied, ‘I'm not afraid to do anything’. The field notes state that he was ‘defensive and aggressive’, and that he answered many questions with ‘people should mind their own business’, which although referring to ‘other’ people, also felt like a comment on the interview. This illustrates the delicate nature of interviewing family members of someone with an invisible, contested condition such as chronic widespread pain, in that the threats to legitimacy perceived by the sufferers may also be perceived by their spouses as coming from an interviewer. The participant may therefore feel the need to legitimate their position throughout the interview (Radley and Billig 1996). In the case of chronic illness one way of so doing is by construction of an ordinary identity, through mention of ‘things that healthy people do in the course of everyday life’ (Radley 1999: 24) or through accounts of ordinary events (Dingwall 1976, Radley and Billig 1996). Both Jeffrey and Natalie define normality through family life and marriage, conveying that the issues they are negotiating are those shared by ‘normal’ families, and thus downplaying the impact of Natalie's condition. A further example of this is Natalie's presentation of her perceived loss of identity as a mother as being due to a child's life stage and changing needs rather than illness:

And of course, now Georgina is getting older, when Georgina was younger I was busy doing things and running her here and of course now, she is 17 she is doing her own things, she doesn't need her mum in that way so I think that has made a difference as well [Natalie follow-up to lifegrid interview].

Natalie thus normalises this potential loss of identity. Other participants in the study maintain a positive identity through presentation of themselves as ‘normal’ parents. Michael, for example, describes the ways in which his chronic widespread pain distinguishes him from ‘other families’. However, considering the question of whether he gets upset or not enables him to present himself as a ‘normal person’ who is the ‘same as most parents’. Health is thus seen as a moral category just as much as any other aspect of everyday life, and essential normality needs to be displayed.

Voysey's (1975) work on the experiences of parents of children with disabilities has many resonances with our work6, particularly in the area of how families present themselves to an interviewer and how they make the case for the form of support and caring that they have chosen. Although the parents in Voysey's study do not deny that having a disabled child has an impact on family relationships, they account for this impact in ways that ‘sustain an appearance which is congruent with the normal order of family life’ (1975: 131), in order to counter charges of ‘deviance’. Ways in which this is achieved include the strategy of information control, which, as previously mentioned, may also be used by those with invisible, contested conditions.

The issue of invoking the ‘normal’ in accounts of chronic widespread pain may be complicated by the need to legitimise the pain through presenting it as something which is ‘not normal’. Thus, sufferers may be simultaneously presenting the ‘ordinary’, in the context of family life and relationships, and the ‘extraordinary’, in terms of their pain as part of an attempt to portray positive identities in the face of delegitimation (Richardson 2005). There is an interesting contrast between the presentation of self in the context of family as normal, set within a context of chronic pain as ‘abnormal’: perhaps one function of the family is to provide an arena for invoking normality for people with ‘abnormal’ chronic widespread pain.

Conclusion

This study has shown that the concept of ‘support’ is more appropriate, in the context of chronic widespread pain, than that of ‘caring’. Practical support is mediated by both the uncertainty of pain and by the roles and responsibilities of other family members, and helps to maintain valued identities of the person with chronic widespread pain. Emotional support is characterised by its flexible, dynamic and reciprocal nature, and contributes towards legitimating a person's chronic widespread pain. Thus, support is context dependent, complex, and involves negotiation of roles and relationships. The concept of supporter seems to describe the activities of the spouse and family of people with chronic widespread pain much more effectively than does the concept of caregiver. Our study builds on recent work which has begun to show caregiving in the family as a dynamic process. It draws particular attention to the key role played in the family by a person with chronic widespread pain, in terms of responsibility for household tasks, with the support provided by the family contributing to the person with chronic widespread pain being able to maintain this role. Expecting and receiving exemption from family roles and responsibilities in the context of an uncertain and fluctuating condition such as chronic widespread pain is a complex process. People with chronic widespread pain are not completely exempted from responsibilities (as Parson's sick role theory would suggest) but instead are helped to maintain them through practical and emotional support of their families. However, our study also lends support to Glenton's (2003) suggestion that the sick role concept reflects the expectations, if not the experience, of people with chronic widespread pain and their families, with emotional support being key in providing legitimacy to an invisible condition.

The support of families can also be interpreted as being orientated towards maintaining normality in the face of physical difficulties created by pain, although the fluctuating and invisible nature of chronic widespread pain means that this is a constantly changing process. This enables people with chronic widespread pain to continue in their normal roles within the family, and also to maintain the normality of the family as a unit. Problems occur when family members do not recognise the changing needs of the person with chronic widespread pain, or recognise the efforts made by them to minimise the impact of the condition on normal family life.

Notes

  • 1

    Freund and McGuire (1999) offer one review of this debate.

  • 2

    In practical terms a lifegrid is a chart with rows showing years in a participant's life, labelled with the actual year and the age of the participant in that year, at five- or 10-year intervals. Significant external events may also be listed in the year in which they occurred. Different areas of a participant's life are represented in the columns of the lifegrid, for example family, work/leisure, housing and health (Parry et al. 1999).

  • 3

    The thematic analysis drew particularly on Interpretative Phenomenological Analysis (IPA) (Smith and Osborn 2003), because of its cyclical and flexible nature (Smith, Jarman and Osborn 1999) and its ability to encompass different data and data types from participants and people in their social networks, including interviews and diaries (Smith 2004).

  • 4

    With the exception of one participant, Harry, who needed help putting socks on.

  • 5

    The term ‘emotion work’ is Hochschild's (1983).

  • 6

    We are grateful to one of the anonymous reviewers for drawing our attention to the relevance of Voysey's work.

Ancillary