Remaking the future: contemplating a life with chronic widespread pain

http://chi.sagepub.com

Chronic Illness

DOI: 10.1177/17423953060020030201 2006; 2; 209 Chronic Illn

Jane C. Richardson, Bie Nio Ong and Julius Sim Remaking the future: contemplating a life with chronic widespread pain

http://chi.sagepub.com/cgi/content/abstract/2/3/209 The online version of this article can be found at:

Published by:

http://www.sagepublications.com

can be found at:Chronic Illness Additional services and information for

http://chi.sagepub.com/cgi/alerts Email Alerts:

http://chi.sagepub.com/subscriptions Subscriptions:

http://www.sagepub.com/journalsReprints.navReprints:

http://www.sagepub.co.uk/journalsPermissions.navPermissions:

http://chi.sagepub.com/cgi/content/refs/2/3/209 Citations

by pascal antoine on October 27, 2008 http://chi.sagepub.comDownloaded from

© W. S. Maney & Son Ltd 2006 DOI: 10.1179/174592006X129491

Chronic Illness (2006) 2, 209–218

Reprint requests to: Jane Richardson.Email: [email protected]; fax: +44 1782 583926

R P

Remaking the future: contemplating a life with chronicwidespread pain

JANE C. RICHARDSON, BIE NIO ONG and JULIUS SIM

Primary Care Sciences Research Centre, Keele University, Keele, Staffs ST5 5BG, UK

Received 8 March 2006, Accepted 23 June 2006

Objectives: This paper reports findings from a larger study that aimed to explore how people with chronic wide-spread pain experience, understand and make meaning of their ‘condition’, and attempt to influence or exert controlover their pain. This included an exploration of sufferers’ understanding of the past and future as well as of theirpresent situation.Methods: A combination of data generation methods was used, including lifegrid interviews, diaries and diaryinterviews, with eight people with chronic widespread pain. Five family members also participated in interviews.Analytical methods were based on interpretative phenomenological analysis (IPA).Results: With regard to their views about the future, participants could be categorized into those who were‘optimistic’ (‘things can only get better’), those who were pessimistic (‘things will get worse’), and those who wereoverwhelmed with uncertainty about the future. Uncertainty was a dominant feature in all the accounts of the future.Discussion: The pervading uncertainty of chronic widespread pain, in which there is no framework for the trajec-tory of the condition, affects perceptions of the future and makes planning for the future difficult. The findings alsoraise the question of how this makes chronic widespread pain different from other chronic conditions in terms ofunderstanding of chronicity, time and future, and hence ‘acceptance’.

Keywords: Chronic widespread pain, Future, Qualitative, Trajectory, Uncertainty

INTRODUCTION

Chronic widespread pain has been describedas ‘a major health problem in the Westernworld’,1 with epidemiological studies esti-mating its prevalence to be between 4% and11%.2–6 However, little is known about theexperiences of people who live with thiscondition.

Chronic illness, by definition, has atemporal nature, and is characterized byuncertainty. When diagnosed with a chroniccondition such as multiple sclerosis (MS),an individual has an idea of the overallcourse that the condition may follow,although an individual prognosis is lack-ing,7,8 which can lead to uncertainty about

the future. In contrast, there is no point atwhich someone is able to state that chronicwidespread pain will be chronic. It can onlybe said that, based on your experience up tothis point, the pain has been and is chronic.Condition-specific empirical research sug-gests that ‘disease categories [are important]to lay people at certain points in their “illnesstrajectory”, especially in being able to iden-tify and name the source of the threat beingfaced’.9 However, the definition of chronic-ity in chronic pain (as used by the Interna-tional Association for the Study of Pain10)is retrospective and thus offers little helpin identification. The threat can be namedas ‘pain’, but cannot be treated as ‘normal’pain (i.e. transient, everyday pain indicatingminor injury or discomfort), as ‘normal’ painwould not have lasted so long. People withchronic widespread pain could therefore be

by pascal antoine on October 27, 2008 http://chi.sagepub.comDownloaded from

210 RICHARDSON ET AL.

said to be living in the ‘long-lasting now’referred to by Hellström and Carlsson.11

It has been suggested that, in the contextof rheumatic diseases, the experiencednature of a particular condition influencesthe perceived time-line of the condition,which in turn influences how people manageand respond to it.12 This suggestion is basedon Leventhal’s Self-Regulation Model,13

which proposes that there is a dynamic rela-tionship between the ways in which peoplethink about, respond to and manage their ill-ness. Illness cognitions are organized aroundfive dimensions: disease identity, time-line,perceived consequences (including physical,social and economic), perceived causes,and beliefs about curability or controllabil-ity. These cognitions arise from sourcesincluding previous illness experience andinformation from other people.

The certainty in a condition such as rheu-matoid arthritis (RA) or MS is that the con-dition will be a permanent part of sufferers’lives and can thus be incorporated into one’sidea of self in the present and future (assuggested by Charmaz14). Although chronicillness changes over time — particularlyconditions such as RA or MS, which arecharacterized by phases — the uncertainty ofchronic widespread pain means that adjust-ment is constant and the uncertainty is com-pounded by not knowing whether the painmay last for another month or for the rest ofthe person’s life. Short-term planning is partof everyday life for people with chronicwidespread pain, but envisioning and plan-ning for the longer-term future presents adilemma, in that it is both necessary andvirtually impossible on a practical level. It ispractically difficult because of the uncer-tainty, but is also emotionally difficultbecause it represents acceptance of chronicwidespread pain as part of the future.

In this paper we therefore explore thebroad question of how sufferers of chronicwidespread pain perceive and plan for theirfutures, given the underlying and pervasiveuncertainty of the condition.

METHODS

This article is based on findings from a widerstudy that explored how people with chronicwidespread pain experience, understandand make meaning of their condition, andattempt to influence or exert control overtheir pain. Ethical approval for this studywas obtained from North StaffordshireLocal Research Ethics Committee.

Participants were selected from respond-ers to a previous community-based surveywho had agreed to further contact. Thissurvey, of adults, was carried out in 1995 bythe Primary Care Sciences Research Centre,Keele University, in conjunction with ageneral practitioners’ surgery in Stoke-on-Trent, and was originally designed toexplore other health areas but includedquestions on musculoskeletal pain and abody manikin.

All eight participants had pain that waschronic (had lasted for at least 3 months)and widespread (occurring in the axial skel-eton, including low back, above and belowthe waist and in contralateral limbs, thesebeing the classification criteria for chronicwidespread pain15). The focus of our studywas on individuals with chronic widespreadpain with no obvious underlying cause,so medical records were used to excludepatients with ongoing illnesses that couldaccount for their pain. (These includedankylosing spondylitis, myalgic encephalitis,RA, MS, spinal osteoarthritis, and spondylo-sis. One participant (Harry) subsequentlyturned out to have a diagnosis of psoriaticarthropy, which was not recorded in thegeneral practitioner records; and another(Natalie) of fibromyalgia.)

Participants’ stories of their pain onset arelong and complex, it is not possible to dojustice to their accounts here (we providedetailed accounts elsewhere16).

The sample was determined accordingto the number of participants likely to berequired in order to generate an appropriaterange and depth of data, and also thewillingness of participants to take part in a

by pascal antoine on October 27, 2008 http://chi.sagepub.comDownloaded from

CONTEMPLATING A LIFE WITH CHRONIC WIDESPREAD PAIN 211

project involving intensive data generation.The Table gives socio-demographic detailsof participants in order to give furthercontext to the data excerpts provided.

This study took a broad interpretative psy-chosocial approach, focusing on the mean-ings and interpretations of participants, whoare considered as active agents in managingand responding to illness,17 and exploringindividuals’ experiences in a social context.A combination of data generation methodswas used, centred around multiple in-depthinterviews, which enable trust to be builtbetween participants and researchers,18

process or change (or indeed stability) to behighlighted, and a deeper understanding tobe gained of ‘the meaning which informantsattribute to certain events’.19 Participantswere interviewed on three occasions: the firstinvolved use of a lifegrid; the second was afollow-up to the lifegrid interview; and thethird was an interview based on an unstruc-tured diary, which seven participants com-pleted. Five family members of participants(four spouses and one daughter) were alsointerviewed.

Lifegrids20 provide one way to obtaininformation on participants’ life courses,

enabling the experience of pain or illness tobe set in the context of the individual’s life21

and taking into account Radley’s22 assertionthat illness does not just impact on the areasof a person’s life, but is experienced there. Inpractical terms, a lifegrid is a chart withrows showing years in a participant’s life,and columns representing different areas of aparticipant’s life, e.g. family, work/leisure, orhealth.20 The flexible nature of the lifegrid,combined with the movement towards taskcompletion, means that participants couldset the pace of the interview, while the jointcompletion of the task creates a rapport withparticipants, helping to build a foundationfor the subsequent interviews.

Family members were interviewed inorder to understand the experience ofchronic widespread pain within a widersocial context and to explore how peopleinterpret and make sense of their conditionand identity within different circumstancesand relationships.23

Participants gave written consent for eachinterview, and this was reaffirmed at the endof the interview. All tapes and diaries wererecorded and transcribed fully, and the

TABLE. Socio-demographic details of participants

Name Age (years) Working status Immediate family

Duncan 50 Retired from police due to ill-health Wife (works); one child at home/university, one away

Eileen 57 Retired from teaching due to ill-health SingleHarry 53 Not working due to ill-health. Wife (redundant); one child at home

Previously factory foreman (college)Michael 56 Retired due to ill-health. Wife (works); one child at school,

Previously miner and railway guard one at universityNatalie 40 Not working due to ill-health. Husband (works, recently unwell);

Previously worked as secretary and one child at home (college)phlebotomist

Sue 46 Working part-time in warehouse. Husband (works); one adult childPreviously worked in community care with own children, one adult child

at home (with schizophrenia)Trevor 58 Not working due to ill-health. Divorced; one adult child (no contact)

Previous work includes the navy andheavy manual jobs

Val 54 Not working due to ill-health. Husband (works, recently unwell);Previous manual work in pottery two adult children at home

industry (both working; one recently unwell)

by pascal antoine on October 27, 2008 http://chi.sagepub.comDownloaded from

212 RICHARDSON ET AL.

NVivo 1.3 data analysis software24 was usedto manage the data.

Analytical methods were used appropriateto the different material generated by partici-pants, drawing on, and combining elementsfrom, different systems of coding and analy-sis, in particular interpretative phenomeno-logical analysis (IPA), in which issuesof interest were identified in transcripts,and developed as themes, which were thenclustered into ‘superordinate themes’.25 IPAis cyclical in nature, allowing themes devel-oped during analysis to be dropped, or thefocus altered, depending on what emergesfrom the data and the analysis of subsequentdata.25 The method is flexible,26 facilitatingits adaptation to data from different sources,including interviews and diaries. It alsoenables exploration of shared themes in con-junction with individuals’ own accounts.26

RESULTS

The following projections of the futurerepresent participants’ attempts to makesense of an uncertain present and an evenmore uncertain future. We have categorizedparticipants’ views of the future into threebroad groups. Two groups were definiteabout the future: first, those who believe that‘things can only get better’, and second,those who believe that ‘things would getworse’, although what is represented bythese axioms and how they are respondedto differ for different people. The thirdgroup comprised those whose overwhelminguncertainty about their condition and howthe experience of it would unfold did notenable them to anticipate the future exceptin terms of uncertainty. Although uncer-tainty also underlies the accounts of the firsttwo groups, it is a particularly predominantfeature in the third.

The bodily experience of chronic wide-spread pain is framed by uncertainty interms of the location, intensity and qualityof pain. Attention to, and thus knowledge of,

the body means that some pattern in thisunpredictability can be discerned, but thisis subject to constant revision when thesepatterns change. People with chronic wide-spread pain become aware of their bodiesin relation to the physical environment, andstrategies centre on manipulation of thesetwo areas. Despite patients’ attempts tolearn about their bodies and what increasestheir pain, pain may still arrive ‘for noreason’, thus maintaining the uncertainty ofchronic widespread pain. While the bodilyexperience of chronic widespread pain wasexplored as part of this research, it is not thefocus of this paper. Nevertheless, the uncer-tainty in the day-to-day bodily experienceof chronic widespread pain provides a back-drop to and a context for people’s views oftheir future with chronic widespread pain.

All names in the following data extractsare pseudonyms. Participants’ words arereported verbatim, with changes made onlywhere clarification is necessary.

‘Things Can Only Get Better’Only two of the participants — Duncan andSue — explicitly described their futurein these terms. Duncan describes the ‘bestpossible scenario’ of ‘new processes’ beingdiscovered, using the actor ChristopherReeve (who was still alive at the time of theseinterviews) as evidence that ‘things can onlyget better’. He also says that ‘things can’tget any worse’, but simultaneously acknowl-edges that he and his wife have consideredthe ‘worst-case scenario’ of him having touse a wheelchair. For Duncan, the impactof this eventuality on his home environmentis part of the scenario, although heacknowledges that it may seem trivial:

And if, and it’s a big if, if I had to go into a wheelchairwe’d have to have the doorways widened, have all thenice doors changed. Just little things, they might notseem little, but they are little things really. (Duncanfollow-up to lifegrid. Duncan attributes his pain totwo accidents over 10 years ago.)

Duncan expresses concern about the impacton his family if he had to use a wheelchair,

by pascal antoine on October 27, 2008 http://chi.sagepub.comDownloaded from

CONTEMPLATING A LIFE WITH CHRONIC WIDESPREAD PAIN 213

particularly for his wife. A wheelchair repre-sented the worst possible future scenariofor four of the participants (Duncan, Harry,Michael and Val), because of the practicalimplications and also for what it signified;that is, in defining them as ‘disabled’.

Duncan was the only participant whoexplicitly talked about a particular futurethat was now closed to him, in terms ofpast plans to run a youth hostel or havea smallholding. For Duncan and Becky,therefore, who have considered the best andworst future outcomes, ‘things can only getbetter’ appears to be a way of coping with theuncertainty and a belief based on a realisticassessment of future scenarios.

Sue also believes that ‘things will getbetter’, although in a different way toDuncan:

There’s got to be a reason. It is to make you stronger, sothat you can cope with the rest of your life and thingscan get easier. If you can cope with what goes on as it ishappening, obviously things years and years on will geteasier. (Sue diary interview. Sue has a diagnosis ofarthritis; she also attributes her pain to other healthproblems and her current working environment.)

Sue’s vision of the future is very much linkedto her interpretation of the meaning of pain.The purpose of the pain is to make herstronger; therefore, as this happens, she willbe better able to cope with it. She does notsuggest that the pain might lessen, only thatshe will be better able to manage it. Her ideaof future improvement focuses on ‘settling’her children:

I want to be able to enjoy what I’ve got and relax andeverything and the kids be happy and settled. Obviouslyas you get older, I am getting a touch of arthritis, prob-ably get worse but I won’t have the stressful life, becauseI honestly do believe that stressing your life, does havean effect on your whole body. I really do. (Sue diaryinterview)

This epitomizes the enmeshing of the painexperience into life. Sue believes that herarthritis will get worse but that, if she hasdealt with the potential sources of stress,mainly her son’s situation (learning difficul-ties and schizophrenia), then things will haveimproved.

Both Duncan and Sue characterize theirattitude towards their current life as ‘gettingyour priorities right’ or ‘making the most ofit’. These, and the other attitude expressed(that of ‘living for the moment’), may appearto be clichés but they also encapsulatea ‘style of adjustment’.27 Living for themoment perhaps sums up both this attitudeand the experience of living with chronicwidespread pain, in that the daily uncer-tainty makes it difficult to do anything otherthan living for the moment, and the futureuncertainty makes it imperative to do so.

‘Things Will Get Worse’The four participants whose orientation tothe future is based explicitly on deteriorationhave formed this ‘belief’ through acomplex integration of different sources ofinformation.

Val bases her ideas about the future on anassimilation of the healthcare professional’sjudgement, her observations of her mother,and her knowledge of her mother’s past:

When I told Mr H all this, he says, ‘The only thing wecan do is make you more comfortable but this problem isnot going get any better, it is just going to get worse asyou get older.’ Which I have seen that in my mother butI mean my mother always did say, she was one of sevenduring the Depression, I was an only child, so where mymother’s feet went at a very early age in her 20s, minehave sort have gone in my middle 40s. So you know, shehas lengthened the time, but I mean he did say it wasan hereditary problem that whatever they’ve got, Iprobably end up with, so this is how I [am] like I am.(Val lifegrid interview. Val has a diagnosis of goutand pressure factures in her foot; she also attributesher pain to childhood operations, heredity and herprevious working environment.)

The doctor’s words are confirmed by Val’sobservation of her mother, but she alsodraws on her mother’s belief about thecause of her problems, which relates it tothe effects of poverty. Val believes that hermother’s determination that her child wouldnot suffer as she had has given her ‘extra’time before the inevitable onset of inheritedproblems. Val’s account also containsunderlying uncertainty about the exact way

by pascal antoine on October 27, 2008 http://chi.sagepub.comDownloaded from

214 RICHARDSON ET AL.

in which things may get worse, and a sugges-tion of uncontrollability over the future:

I don’t really drive an awful lot now. I wouldn’t miss it,let’s put it like that, if I couldn’t do it, but who knowsbecause different things are coming. So you think well,what is coming now, you don’t know what is comingnow. (Val diary interview)

Harry has also based his beliefs about thefuture on the statement by a healthcare pro-fessional: ‘You do realize that things only getworse, they don’t get better’. Shortly afterthis, he and his wife bought a bungalow andhad it modified for future wheelchair usewith, for example, widened doorways andlowered light switches. For Harry, however,there is a tension between this rational plan-ning towards, and the emotional acceptanceof, a wheelchair:

Harry: I have got to say on top of everything else, that ismy biggest dread. I don’t want to end up in a wheel-chair. Two reasons, I don’t want be in one and I’d befrightened [to] death if she’d got [to] push me. I reallydon’t, that is a dread, I don’t want to end up in awheelchair.Carol (Harry’s wife): It is because of what of peoplethink, isn’t it?Harry: Well yeah, it is better with a stick but I don’twant to, that is something I don’t want. (Harry lifegridinterview. Harry has a diagnosis of psoriaticarthropy.)

Although Harry uses humour in talkingabout not wanting to be in a wheelchair, hehas difficulty in articulating exactly what thefear is beyond ‘I don’t want it.’ It is his wifewho makes the suggestion that the reason iswhat a wheelchair signifies, in terms of a dis-abled identity, an identity that Harry rejectsthroughout his interviews. A related andrecurring theme is that of movement: Harrybelieves that if his condition ever does ‘burnitself out’ (as the doctors have suggested itmight), he will be left with the amount ofmovement he has at that time; hence hisdesire to ‘keep moving’. A wheelchair maytherefore represent not only visible disabilitybut also a giving up of movement and hencerelinquishing hope of the condition ‘burningout’.

For Trevor, it is his knowledge of his bodyand his current experience of pain in thatbody that forms his perception of the future:

I don’t know if it is going to work out in the long term.I can tell from the way I feel, at times, in the joints, thatit’s not going to be something that will get better. Itwon’t sort of be something that will go away. ThatI don’t know whether — I have read up on a few things— I don’t understand if it is something that is heredi-tary. (Trevor diary interview. Trevor attributeshis pain to ‘rheumatic fever’ in childhood, heavymanual work and a workplace injury.)

Trevor speculates about the possible causesof his condition in contemplating the future,considering but rejecting the idea that it ishereditary and returning again to the causaleffects of his ‘rough’ childhood.

Michael’s account of a worsening futureis less definite than those above. He doesnot explicitly talk about the future, but doesacknowledge that age increases the pain,thereby suggesting a future with more pain:

Because as you get older, it gets worse. The pain seems toget worse because I imagine your bones are getting olderand there is a lot more wear and tear so it does get worse.(Michael follow-up to lifegrid. Michael attributeshis pain to a workplace accident and subsequentoperations.)

Michael was offered the option of an opera-tion. According to his doctor, not havingthis operation would have resulted in hishaving to use a wheelchair. Thus, Michael’sconceptions of his present and future self areset against this possible self.

Expectations of the future can thereforebe seen to be based on past as well as presentexperiences, although Sheila, Michael’swife, did not look much beyond the presentexperience: ‘But I mean as far as things areat the moment, touch wood, we seem to begetting on along all right.’ She did considerthe possibility of Michael having to use awheelchair, but this was much more hypo-thetical than for the other participants, whoseemed to consider it as a potential reality.

Overwhelming Uncertainty About theFutureThe remaining two participants — Natalieand Eileen — expressed less definite

by pascal antoine on October 27, 2008 http://chi.sagepub.comDownloaded from

CONTEMPLATING A LIFE WITH CHRONIC WIDESPREAD PAIN 215

orientations towards their future. Uncer-tainty about the future is encapsulated inthese extracts from Natalie’s interviews:

It frightens me it does. I can have some really good daysand I feel fantastic and then, I can have some really,really bad days and think, ‘I could be like this for therest of my life’ when I’m older. If it is like this now at 40,what is it going to be like, it does worry me that (Nataliediary interview)

No, [name of rheumatologist] has never mentionedthe future. They have said that some people withfibromyalgia it can go, as quickly as it started, but then,she did say that this normally happens within a fewyears. Well if I have had this for 9, 10 or whatever yearsnow, but she has said that some people can have it for solong, then, other people, they don’t know why. Nobodyhas ever mentioned the future at all. (Natalie diaryinterview. Natalie has a diagnosis of fibromyalgia:she links its onset to an injury to her wrist.)

Neither Natalie’s body nor the healthcareprofessionals could provide any answers tothe uncertainty of Natalie’s condition. Thesuggestion that it might go as quickly as itcame has echoes of Harry’s ‘burning out’ butseems to exacerbate the uncertainty. Theexperience of seeing her father’s conditiondeteriorate so that he now uses a wheelchairled Natalie to consider ‘worst possiblescenarios’, especially when contemplatingmarriage:

When I thought I‘d got arthritis, like my father, thatwas a nightmare. I’ve seen how my dad has been ill overthe years and how gradually ill he’s become. I did say toJeffrey when he asked me to marry him, what wouldhappen if I end up in a wheelchair. I hope to God itdoesn’t, but you don’t know do you? I made sure heknew that even if it is only a million to one chance, heknew there might be a chance before he took me on,made sure of that. That is something, I don’t think itwill happen but you don’t know do you. Something Ihad to think about before marrying him, he did knowthat. (Natalie diary interview)

Natalie’s use of the phrase ‘took me on’ sug-gests that she perceives herself as a burden,and needed to make sure that she was not‘deceiving’ Jeffrey. The phrase also suggeststhat the choice lay wholly with him, withNatalie being passive in relation to the deci-sion. Natalie’s account suggests an uncer-tainty about her self and her attractiveness or‘lovability’ as a disabled person, as well as

uncertainty about her condition. The fluctu-ating nature of her present bodily experienceof pain translates itself into uncertaintyabout the future.

Eileen’s perception of the future isaffected by her idea of how long she will live,based on her family’s longevity. Her fear isthat she will live too long (her mother lived to95 and her grandmother to 93):

So I just dread living a long time with the type of painthat I’ve experienced to be honest, it has frightened me.It has frightened me, I don’t want to be a long liver,I think I’d rather be a short liver and be able to achievemore of what I have set my heart on doing in my youthto be honest. (Eileen lifegrid interview. Eileen hasa number of medical explanations for her pain,including arthritis and postural problems; she alsolinks its onset to a music examination some yearspreviously.)

Thus the uncertainty for Eileen is over howlong she will have to live with her pain, andher concern is with her quality of life,and with making practical and financialarrangements for ‘taking care’ of herself:

Particularly in the last year there has been a heavyemphasis on planning ahead. But I think I have alwaysbeen that kind of person whereby I am so conscious Ihave got to take care of myself, being an only one, beingnot married. Those are factors that come in as well. Isuppose it has become obsessive this desire to be indepen-dent, hence the desire to get the nursing home sorted outwhich didn’t actually come off. I’m in too bad a shape tobe taken on by anyone. So we had to put an investmentelsewhere to take care of that. (Eileen diary interview)

For Eileen, who has no family, the majorconcern is maintaining her independence,through planning for the future. However, atthe same time, Eileen talks about feeling thatshe should live more in the moment, but herneed for independence is currently takingpriority. Planning for the future may alsobe a way for Eileen to maintain a degree ofcontrol and thus reduce uncertainty in oneaspect of her life.

DISCUSSION

Summary of Main FindingsWith regard to their views about the future,we have categorized participants into those

by pascal antoine on October 27, 2008 http://chi.sagepub.comDownloaded from

216 RICHARDSON ET AL.

who were ‘optimistic’ (‘things can only getbetter’), those who were pessimistic (‘thingswill get worse’), and those who wereoverwhelmed with uncertainty. Uncertaintywas a dominant feature of all the accounts.Participants’ accounts suggest that they arestruggling to make sense of an uncertainpresent, and, as a corollary, that envisagingand planning for such uncertainty in thefuture becomes a virtual impossibility. Forpeople with chronic widespread pain, con-templating the future involves an attempt tobring together personal bodily experience,biography, family experience, medicalknowledge and uncontrollable uncertaintyin a coherent account that also provides aframework for living in the present.

People with chronic widespread pain can,within the constraints of their physical, socialand financial resources, manage their every-day lives and maintain or re-create positiveidentities. Even the unpredictability anduncertainty in chronic widespread pain canbe somewhat mitigated, through managingthe tensions and balances in one’s body, andthrough flexibility of plans and adaptabilityof family members. It is in consideringthe future that the uncertainty in chronicwidespread pain comes to the fore, withsome participants unable even to considerwhat a future with chronic widespread painmight look like. Not knowing how long thepain is going to last leaves participants in anequivocal state, similar to that described byHonkasalo, who suggests that chronic painis ‘both transient and permanent. It isambiguity par excellence.’28

Strengths and LimitationsOne of the strengths of this study lies inthe intensive data generation process, whichmeant that the information for each partici-pant was truly in-depth, and each interviewwas able to build on the rapport generatedpreviously, in order to develop an in-depthunderstanding of the experience of chronicwidespread pain in the different contexts ofeveryday life, family life and biographical

life. The family member interviews providean additional perspective from those whoshare the lives, and futures, of people withchronic widespread pain, although thiscould have been strengthened further byincluding more participants’ children in thefamily member interviews.

Relationship of Findings to the ExistingLiteratureOur findings complement those of studiesexploring the prevalence of chronic wide-spread pain, in presenting details about whatthis actually means for sufferers in terms oftheir everyday lives, their families’ lives and,as this paper has shown, the future.

The findings certainly support the litera-ture regarding the uncertainty of chronicconditions, while also demonstrating howmuch more salient uncertainty is in a condi-tion such as chronic widespread pain, whichhas no illness trajectory. The certainty in acondition such as RA or MS is that the con-dition will be a permanent part of sufferers’lives and can thus be incorporated intoone’s idea of self in the present and future.Although chronic illness changes over timeand may be characterized by phases, theuncertainty of chronic widespread painmeans that adjustment is constant, and theuncertainty is compounded by not knowingwhether pain will last for another month orfor the rest of the person’s life. This raisestwo questions: if pain is made into part ofself, what happens if the pain goes away, anddoes making pain part of self give it perma-nency? We did not find any evidence thatpeople were incorporating their pain intotheir idea of future self, as suggested inrelationship to other chronic conditions.14 Infact, some participants are waiting for theircondition to ‘burn out’ (Harry), or disappear(Natalie), or for medical progress to offer a‘cure’ (Duncan).

We did not set out to explore the utilityof the self-regulation model in the context ofchronic widespread pain; nevertheless, someof our findings have resonance with the

by pascal antoine on October 27, 2008 http://chi.sagepub.comDownloaded from

CONTEMPLATING A LIFE WITH CHRONIC WIDESPREAD PAIN 217

model. The growing interest in Leventhal’smodel, particularly in the context of chronicpain, can be seen as part of the move awayfrom seeing chronic pain patients as a homo-geneous group. The model emphasizes theindividual nature of perceptions of a condi-tion, so although the participants in ourstudy all have views about the future, theseviews are determined by different factors,including their present bodily condition,information from and observation of familymembers, and information from healthcareprofessionals, and thus vary. Our findingssupport those of Bendelow and Williams:29

although two broad groups (resignation andaccommodation) were identified within thepatients attending a pain clinic, the individu-als within these groups had formed theseapproaches through a complex interplay ofindividual beliefs and circumstances.

The usefulness of grouping or clusteringpain patients according to their cognitionshas been explored as a potential way ofimproving treatment.30,31 Our research wasnot designed with this purpose: we havecategorized participants’ views, rather thanparticipants. This is a crucial distinction,but our findings may nevertheless helphealthcare professionals to view treatmentwithin the context of individual lives. In ourresearch, participants’ views of the futurerepresented more of an orientation and away of coping with present uncertaintythan any concrete plans for managing theirchronic widespread pain.

ImplicationsThis article has raised the issue of how thepervading uncertainty of chronic widespreadpain, which has neither a universal nor anindividual trajectory, affects perceptions ofthe future. Planning for the long term is diffi-cult on a practical level, but is also difficultemotionally because of the implications forfuture self and identity. It also raises thequestion of how this makes chronic wide-spread pain different from other chronicconditions such as MS, in terms of under-standing of chronicity, time and future, and

hence ‘acceptance’. This is an area thatwarrants further research.

The findings of our study have implica-tions for practice, particularly related tohow clinicians manage patients with chronicwidespread pain over time. The findings arerelevant to the sorts of explanation or self-management advice that clinicians give topatients. Patients’ views of their future mayaffect what interventions or managementstrategies they see as meaningful, and conse-quently may affect issues such as adherence.

A. We thank the partici-pants, who gave their time, and so muchmore, freely and generously, and theNHS(E) Capacity Building Programme,who funded this study.

REFERENCES

1. Gran JT. The epidemiology of chronic generalizedmusculoskeletal pain. Best Pract Res Clin Rheumatol2003; 17: 547–61.

2. Croft PR, Rigby AS, Boswell R, Schollum J, SilmanA. The prevalence of chronic widespread pain in thegeneral population. J Rheumatol 1993; 20: 710–13.

3. Hunt IM, Silman AJ, Benjamin S, McBeth J,Macfarlane GJ. The prevalence and associatedfeatures of chronic widespread pain in the commu-nity using the ‘Manchester’ definition of chronicwidespread pain. Rheumatology 1999; 38: 275–9.

4. Lindell L, Bergman S, Petersson IF, JacobssonLTH, Herrström P. Prevalence of fibromyalgia andchronic widespread pain. Scand J Primary HealthCare 2000; 18: 149–53.

5. Papageorgiou AC, Silman AJ, Macfarlane GJ.Chronic widespread pain in the population: a sevenyear follow up study. Ann Rheum Dis 2002; 61:1071–4.

6. Wolfe F, Ross K, Anderson J, Russell IJ, Hebert L.The prevalence and characteristics of fibromyalgiain the general population. Arthritis Rheumatism1995; 38: 19–28.

7. Boeije HR, Janssens ACJW. ‘It might happen or itmight not’: how patients with multiple sclerosisexplain their perception of prognostic risk. Soc SciMed 2004; 59: 861–8.

8. Corbin J, Strauss A. Unending work and care:managing chronic illness at home. San Francisco:Jossey-Bass, 1988.

9. Bury M. Health and illness in a changing society.London: Routledge, 1997.

by pascal antoine on October 27, 2008 http://chi.sagepub.comDownloaded from

218 RICHARDSON ET AL.

10. Merskey H, Bogduk N. Classification of chronic pain.Seattle: International Association for the Study ofPain, 1994.

11. Hellström C, Carlsson SG. The long-lasting now:disorganization in subjective time in long-standingpain. Scand J Psychol 1996; 37: 416–23.

12. Pimm TJ, Weinman J. Applying Leventhal’s SelfRegulation Model to adaptation and intervention inrheumatic disease. Clin Psychol Psychother 1998; 5:62–75.

13. Leventhal H, Benyamini Y, Brownlee S, et al.Illness representations: theoretical foundations. In:Petrie KJ, Weinman J, eds. Perceptions of health andillness: current research and applications. London:Harwood Academic, 1997.

14. Charmaz K. The body, identity, and self: adaptingto impairment. Sociol Q 1995; 36: 657–80.

15. Macfarlane G, Croft PR, Schollum J, SilmanA. Widespread pain: is an improved classificationpossible? J Rheumatol 1996; 23: 1628–32.

16. Richardson JC, Ong BN, Sim J. Is chronicwidespread pain biographically disruptive? Soc SciMed 2006; 6: 1573–85.

17. Bury M. The sociology of chronic illness: a reviewof research and prospects. Sociol Health Illness 1991;13: 451–68.

18. Charmaz K. Stories of suffering: subjective talesand research narratives. Qual Health Res 1999; 9:362–82.

19. Elliott H. The use of diaries in sociological researchon health experience. Sociol Res Online 1997; 2;http://www.socresonline.ory.uk/socresonline/2/2/7.html.

20. Parry O, Thomson C, Fowkes G. Life course datacollection: qualitative interviewing using the lifegrid. Sociol Res Online 1999; 4: 152–65.

21. Mathieson CM. Interviewing the ill and the healthy.In: Murray M, Chamberlain K, eds. Qualitativehealth psychology. London: Sage, 1999: 117–32.

22. Radley A. Social realms and the qualities of illnessexperience. In: Murray M, Chamberlain K, eds.Qualitative health psychology. London: Sage, 1999:16–30.

23. Radley A, Billig M. Accounts of health and illness:dilemmas and representations. Sociol Health Illness1996; 18: 220–40.

24. QSR International Pty Ltd. NVivo qualitative dataanalysis program version 1.3. Melbourne, 2000.

25. Smith JA, Jarman M, Osborn M. Doing interpreta-tive phenomenological analysis. In: Murray M,Chamberlain K, eds. Qualitative health psychology.London: Sage, 1999: 218–40.

26. Smith JA. Reflecting on the development ofinterpretive phenomenological analysis and itscontribution to qualitative research in psychology.Qual Res Psychol 2004; 1: 39–54.

27. Radley A. Style, discourse and constraint inadjustment to chronic illness. Sociol Health Illness1989; 11: 230–52.

28. Honkasalo ML. Vicissitudes of pain and suffering:chronic pain and liminality. Med Anthropol 2001;19: 319–53.

29. Bendelow GA, Williams SJ. The end of the road?Lay views on a pain-relief clinic. Soc Sci Med 1996;43: 1127–36.

30. Hobro N, Weinman J, Hankins M. Using theself-regulatory model to cluster chronic painpatients: the first step towards identifying relevanttreatments? Pain 2004; 108: 276–83.

31. Turk DC. Customizing treatment for chronic painpatients: who, what, and why. Clin J Pain 1990; 6:255–70.

by pascal antoine on October 27, 2008 http://chi.sagepub.comDownloaded from