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European Journal of Pain 10 (2006) 199–207

The experience of chronic back pain: Accounts of lossin those seeking help from pain clinics

Jan Walker a,*, Beatrice Sofaer b, Immy Holloway c

a Faculty of Medicine, Health and Life Sciences, Building 67, University of Southampton, Highfield, Southampton SO17 1BJ, UKb Clinical Research Centre for Health Professions, University of Brighton, East Sussex, UK

c Institute of Health and Community Studies, Royal London House, Bournemouth University, Christchurch Road, Bournemouth, UK

Received 9 November 2004; accepted 14 March 2005Available online 18 April 2005

Abstract

Background: This study responded to the need for greater understanding of the experiences that help to shape the worldviews ofchronic back patients as they seek help from pain clinics.Aim: To elaborate on the lived experience of chronic back pain in those actively seeking help from pain clinics.Methods: This was a qualitative study, based on an interpretative phenomenological approach. As part of in-depth interviews, par-ticipants were invited to �tell their story� from the time their pain began. Participants were twelve male and eight female patients, allof whom were diagnosed as having chronic benign back pain and had recently attended one of two pain clinics as new referrals. Thedata were analysed thematically.Findings: Loss was one of five major themes to emerge. The narrative accounts revealed a catalogue of socio-economic and othermaterial losses including loss of physical and mental abilities, occupational and social activities, job or role. In those of working age,these led to financial hardship and changes in interpersonal relationships, culminating in loss of self-worth, future and hope.Conclusions: The findings suggest that material losses, as well as perceptions of loss, are prominent issues for those of working ageseeking help from pain clinics for chronic back pain, and may need to be acknowledged and addressed as part of therapeutic inter-ventions. The possibility of age-related differences in pain-related loss may be worthy of further investigation.� 2005 European Federation of Chapters of the International Association for the Study of Pain. Published by Elsevier Ltd. All

rights reserved.

Keywords: Chronic back pain; Loss; Grief; Interviews; Qualitative research

1. Introduction

Chronic back pain has been identified as a costlyproblem for society and one of the most common rea-sons for seeking help from pain clinics (Ehrlich, 2003).Thomas et al. (1999) identified that disabling symptomspersisted in 30% of episodes of acute back pain. Epide-

1090-3801/$32 � 2005 European Federation of Chapters of the Internationalreserved.doi:10.1016/j.ejpain.2005.03.007

* Corresponding author. Tel: +44 2380 597983; fax: +44 2380597900.

E-mail address: j.m.walker@soton.ac.uk (J. Walker).

miological studies have identified a number of socio-demographic variables associated with chronicity,including age and employment status (Elliott et al.,1999). In addition to general health, physical activityand biomechanical factors, premorbid predictors ofrecurrent back pain episodes and poor outcomes havebeen found to include higher levels of psychological dis-tress and dissatisfaction with employment (Croft et al.,1995; Thomas et al., 1999). Those attending pain clinicshave often undergone a range of failed treatments forback pain and have high levels of psychological distress(Walker et al., 1999).

Association for the Study of Pain. Published by Elsevier Ltd. All rights

200 J. Walker et al. / European Journal of Pain 10 (2006) 199–207

Conceptual models of chronic pain have identified acycle of pain, stress, life and work interference, and emo-tional change that leave unanswered the �chicken-and-egg� question about which comes first (Gatchel, 1996).Biopsychosocial and diathesis-stress models of chronicpain have identified pain appraisals as important deter-minants of responses to pain (Gatchel, 1996; Turk,2002). According to Lazarus and Folkman (1984), ap-praisal is an interactive process dependent on the beliefsand attitudes of the appraiser and the object of apprai-sal. This has prompted psychologists to search forpersonal vulnerability factors that predict negative re-sponses to persistent pain and poor treatment outcomes(Dworkin and Banks, 1999; Vlaeyen and Linton, 2000).These predispositions include personality traits, atti-tudes, beliefs, affects and behaviours (Weisberg andKeefe, 1999; Tait, 1999) which have tended to challengethe moral character of those with chronic back pain(May et al., 1999). Most notable of the characteristicscurrently associated with back pain are fear-avoidancebeliefs and pain catastrophising (Turk, 2002). A recentsystematic review by Pincus et al. (2002) confirmed therole of psychological distress in chronic back pain buthighlighted the need for further research into the roleof psychosocial factors in its progression. Some authorshave long argued that such research needs to take moreaccount of the social context of chronic pain patients�lives (Roy, 1992; Miller and Omarzu, 1998; Morse,1998), including problems associated with secondaryloss (Gatchel et al., 2002).

A number of authors (Price, 1996; Baszanger, 1997;Smith et al., 1997) have advocated the use of qualitativeinquiry to elucidate the subjective experience of pain.This approach has been recognised as particularly usefulin providing important information about the sociocul-tural context of a problem (Yardley, 1997; Mathiesonand Barrie, 1998). However, limited qualitative studyof the subjective experience of chronic back pain has ta-ken place. The important observations of Roy (1992,2001, 2004) are based entirely on individual case studies.Borkan et al. (1995) used a combination of focus group,participant observation and interviews to explore thenature of back pain, associated limitations, coping strat-egies and treatment evaluations. However, their commu-nity-based sample was not recruited on the basis of painduration or intensity and few appeared to have the com-plex pain histories commonly found in those activelyseeking help from pain clinics. Osborne (1995) and Os-borne and Smith (1998) reported on a qualitative studyof nine women of working age attending a pain clinicand assessed as having �inappropriate� pain behaviours.Interviews appear to have taken place in the clinic set-ting and the phenomenological analysis focused on psy-chological processes of adjustment; emergent themesincluded �searching for an explanation�, �comparing thisself with other selves�, �not being believed� and �with-

drawing from others�. Little information is forthcomingabout the home lives or socio-economic circumstancesof the participants. Seers and Friedli (1996) presentedqualitative information gathered during semi-structuredhome interviews as part of an intervention study ofrelaxation training for chronic pain. They identifiedthemes clearly worthy of more detailed exploration,including �relationships�, �activities�, �employment� and�lack of personal control�. Bendelow and Williams(1996) reported on findings from short semi-structuredinterviews that took place in a pain clinic followingtreatment. Their findings focused predominantly onthe experience of pain treatment, but they also recordedthe presence of life disruptions that threatened to over-whelm some of the interviewees and urged further qual-itative research in this area. More recently, Henwoodand Ellis (2004) conducted focus groups to elicit the im-pact of living with chronic neuropathic pain, though theauthors focused their conclusions on pain coping strate-gies rather than contextual influences on adjustment.

The present study was designed to provide a more de-tailed understanding of the lived experience of chronicback pain prior to seeking help from pain clinics. Weidentified five themes: �the pain takes over� (Hollowayet al., 2001) in which participants related how back paingradually took a hold over their lives; �in the system�(Walker et al., 1999) which illustrated how participantswere rendered passive and helpless by medical, socialsecurity and legal systems; �sense of loss� which is thesubject of this paper; �they don�t understand�, which fo-cuses on issues related to social judgement; and �comingto terms�, which examines the process of adjustment (orlack of it) to living with pain. In this article, we focusspecifically on the theme of loss. We also give some con-sideration to issues that appear to influence the ability ofparticipants to come to terms with their situation.

2. Method

2.1. Design

The study used an interpretative phenomenologicalapproach (IPA) (Smith, 1996), based on single narrativeinterviews. IPA is concerned with the ways in whichindividuals make sense and talk about issues related tohealth and illness (Smith et al., 1997). It is phenomeno-logical in its concern with individual perception ofevents, and interpretative in its recognition of the centralrole of the researcher(s) in trying to make sense of theparticipants� reports of their personal and social worlds(Smith, 2004). Our aim was to understand the partici-pants� lived experience of pain up to the point of newreferral to a pain clinic. This ensured that participantswere at similar points in their pain careers in terms ofmedical help-seeking.

J. Walker et al. / European Journal of Pain 10 (2006) 199–207 201

2.2. Sample

The sample consisted of 12 male and 8 female patientswho had recently been assessed as new referrals at one oftwo pain clinics in the South of England and had a con-firmed diagnosis of chronic benign back pain. The aimof recruitment was to sample a diverse range of ideasand experiences. Initially, patients were selected consecu-tively butwere later sampled purposively to ensure a fairlyheterogeneous mix of experiences according to gender,age, duration of pain, and social background as judgedby former occupation (only one was currently working)and home address. Out of 23 people approached, two de-clined to be interviewed and one withdrew on telephonecontact, citing family illness. Participants appeared fairlytypical of referrals in the two chosen localities; all wereBritish and white, and all but two participants referredto themselves as of working age. Their ages ranged from28 to 79 years, median 56 years, and included two overthe retirement age of 65 years. The median duration ofpain was eight years with a range of two to fifty years(one older participant had a long-standing back painproblem that had recentlyworsened).All had experienceda variety of treatments for back pain prior to this referralto pain clinic.

2.3. Procedure

Following ethical approval, eligible patients attend-ing the pain clinics were provided with verbal and writ-ten information about the study. Having receivedwritten consent, the researchers contacted participantsby telephone, consent was reconfirmed, and an appoint-ment made to conduct audiotaped interviews in the par-ticipants� own homes. This enabled them to feel morerelaxed and in control, and provided the researcherswith the opportunity to observe and record field notesabout their home surroundings. The interviews lastedbetween one and a half and three hours. Following thetradition of Kleinman (1988), a narrative approach todata collection was used in which participants were in-vited to �tell their story� of back pain from the time thepain started to the present day. This encouraged freereflection and sought to eliminate biases that might beintroduced into the data through the use of an interviewguide, as in a semi-structured interview. Where appro-priate, participants were encouraged to elaborate onsalient feelings or issues expressed. If specific questionsarose from the interviewee or interviewer, these were de-ferred until the end of the interview to avoid influencingthe data.

2.4. Data analysis

The contents of the transcripts were listened to andread through several times in order to capture a full

impression of the data. Then chunks of text were ex-tracted that conveyed meaning freely attached by partic-ipants to the events or situations encountered duringtheir pain histories (Kvale, 1996). These were repeatedlysorted as commonalities of meaning emerged and werethen grouped into broader categories of meaning untilsubstantive main themes were identified. At this point,an experienced qualitative researcher who had no previ-ous experience of pain research and was not involved inthe data collection, assisted in verifying that the chunksof text extracted were consistent with the narrative con-tent, and that the themes finally selected robustly repre-sented the data available in the transcripts.

In presenting the theme of loss, direct quotations areintegrated with descriptive accounts to illustrate narra-tive sub-themes and provide an audit trail that linksthe data with our interpretation of it. Pseudonyms areused to illustrate the range of experiences represented.

3. Findings

Loss emerged as a continuous thread throughoutmost participants� stories. The term �loss� is used in thiscontext to refer to life events or changes that resulted inthe participants being or feeling deprived of somethingthey valued (Miller and Omarzu, 1998). The findingsillustrate how material changes accumulated and led tooverwhelming perceptions of loss. The findings aregrouped into the following sub-themes:

� Loss of abilities and roles.� Employment-related losses.� Financial and related losses.� Relationship losses.� Loss of identity.� Loss of hope.

In accordance with an accepted convention in quali-tative research, each sub-theme is supported by directquotations and considered with reference to the extantliterature. There then follows a general discussion onsome of the theoretical and practical implications ofthe findings.

3.1. Loss of abilities and roles

Loss of physical ability was evident in the stories ofall participants and several openly wept as they spokeof the physical restrictions on their lives. An extremeexample was Geoff, a former university lecturer aged56, who had spent most of the last four years in bed.All participants referred to their inability to undertakeessential activities of living and home maintenance,which now required reliance on others. Peter, a formerunskilled worker aged 38, said ‘‘I get so frustrated

202 J. Walker et al. / European Journal of Pain 10 (2006) 199–207

sometimes I have broken down and cried because I can�teven drill, I can�t decorate, I can�t do anything’’. Limita-tions in physical role has been identified as the qualityof life domain most affected among those attending painclinics (Lame et al., 2005). Carol, aged 38, was a work-ing wife and mother when she hurt her back but her hus-band now undertook most household and child careactivities in addition to his own work, which made herfeel �dreadful�. Mike, 56, still managed to work occasion-ally as a supply teacher, but felt he was really �living off�his girlfriend (a physiotherapist). Gottlieb (1985) identi-fied reciprocity as the foundation of support networks,and we observed that perceived loss of ability to recipro-cate help provided by family and friends appeared tohave a damaging effect on the self-worth of participants.

Some complained that pain had affected their mentalas well as their physical abilities. For example, Regclaimed that lack of concentration prevented him fromtaking a desk job while Geoff blamed it for interruptinghis writing career. Roy (2004) identified loss of cherishedactivities and roles as a major source of inner turmoilfollowing disability, while Sparks (1996) wrote of hispersonal inability to accept the premature end of hisfirst-class sporting career because of back pain. Simi-larly, Reg, an unskilled worker aged 53, missed ridinghis motorbike so much that he kept it parked besidehis bed. �Lost� activities for our participants includedwalking, going to the theatre, out for a meal, drivingor travelling more than a short distance by car or publictransport, playing with children or grandchildren, andgoing on holiday. As a result, most participants reportedlives that were socially and environmentally restricted.Eileen, a former services entertainment officer, aged62, commented: ‘‘it [the pain] destroyed my life, it�s de-

stroyed my husband�s and my daughter. We�d planned so

much the things we wanted to do when he retired. We

planned to go to Australia but we can�t do that now be-

cause I can�t sit in the car even for half an hour’’.Thompson (1998) noted that loss robs life of meaning

when highly desired goals become no longer attainable.The goals of our participants appeared to reflect age-re-lated norms which they were reluctant to relinquish.Whereas those of working age expected to be active,the two older participants appeared to accept physicallimitations and lack of sleep as a natural consequenceof the ageing process: ‘‘I�m getting on and it�s somethingthat you get as you get older’’ (Edna, aged 74); ‘‘you just

have to make the best of a bad job’’ (Beryl, aged 79).These comments appear typical of the attitudes of olderpeople suffering from �common place� pains (Becker,1999).

3.2. Employment-related losses

Loss of job, following one prolonged or several shortperiods of sick leave for pain and pain-related disability

has long been recognised as typical of those attendingpain clinics (Crook and Tunks, 1985). Job loss was re-ported by all of the participants of working age and ap-peared to rank high in terms of life disruption because ofits domino effect in precipitating other losses. Sense ofloss was exacerbated by a lack of understanding or sym-pathy on the part of employers. Steve, aged 44, hadworked all his life for the same company repairing pub-lic telephones. When he tried to return to work after ayear of treatment for back pain, the firm put pressureon him to �volunteer� to leave. They took away hisvan, complete with tools and personal effects, then chan-ged his job description requiring him to service junctionboxes and overhead cables. He finally gave in when hewas transferred to a depot 35 miles from home. Occupa-tional rehabilitation programmes have been shown to beassociated with faster return to work (Karjalainen et al.,2000). The availability of light duties appears importantin assisting return to work (Fransen et al., 2002), andperceived lack of support at work has been identifiedas hindering recovery (Hoogendoorn et al., 2000; Mar-hold et al., 2002). Yet none of our participants reportedreceiving any kind of work-based assessment or supportfollowing the onset of back pain. Laura, aged 56, whohad worked as a fraud officer for the benefits agency,commented ‘‘in the Civic Service you�re just a number

really’’. Sue, aged 28, injured her back while workingas a nurse in the UK National Health Service: ‘‘I was

a career person, it was never my intention to get married

and have children. I loved my job . . . I was devastated’’.When she eventually attended a meeting to considerher industrial injury claim: ‘‘My manager sat down and

asked how I was. I said �I want it noted that this is the first

time you have enquired after my health in two years�. I feltbitter about that. . . . This is supposed to be a caring pro-

fession, but they don�t care for their staff’’. Job dissatis-faction has been identified as an important factor inthe development of chronicity in back pain (Thomas etal., 1999; Truchon and Fillion, 2000). Our findings sug-gest the necessity to differentiate between satisfactionwith work prior to and following the onset of persistentback pain.

Return to work is an important indicator of success-ful treatment outcome (Van Tulder et al., 2001) and hasbeen described as the primary goal for rehabilitation(Kool et al., 2002). Chronic back pain patients seem tohave earned a reputation for being work-shy, but theseparticipants reported vigorous attempts to return tosome kind of paid employment, and several claimed tohave lied about their health status to obtain part-timejobs to earn money and maintain independence. The fol-lowing accounts were fairly typical of those employed inmanual work: ‘‘I�ve had a variety of jobs from security

bus driver to making milk cartons, but it�s always endedup where I�ve had to take a lot of time off of work because

of the pain . . . I�ve never told the employers I�ve had a

J. Walker et al. / European Journal of Pain 10 (2006) 199–207 203

back injury or I�ve had a back operation because you

would never get a job and I had to have a job because

the money was not there.’’ (Peter). ‘‘I�m afraid the

employers aren�t tolerant of the amount of time that I have

to have off. I would use my holidays rather than lose my

job . . . I gave away my holidays, my [time off in] lieu,overtime, and at the end of the day they just said �sorry,that�s it. . . . the ideal job I need is 10 minutes standing

up, 10 minutes sitting down, 10 minutes walking about

and 10 minutes lying down – not too many jobs around

like that’’ (Reg). Only Judith, a laboratory technicianaged 54, had regained full-time work, but this involveddeceiving her current employer and was at the expenseof obtaining reasonable compensation for breach ofhealth and safety regulations by her former employer.Eileen and John, both in their early 60s but past theage at which many people choose to retire, expressedguilt and resentment at their inability to maintain ajob. It appeared that their expectations were frozen intime at the point, some years ago, when pain had robbedthem of the choice to work.

3.3. Financial and related losses

Financial loss is a well-documented and inevitableconsequence of job loss (Pearlin, 1989) and chronic pain(Kemler, 2002) and produces a cascade of stressful eco-nomic life events (Price et al., 1998). This led many ofour participants to speak of having �lost everything�.John, a former army officer and dental technician aged60, lived with his wife in a smart detached house witha �for sale� board outside. He observed: ‘‘I�ve been off sick

so long we�ve used all our savings, virtually nothing left,that�s why we�re moving downwards, putting a few thou-

sand pounds in the bank’’. Bill, aged 42, lost a well-paidjob as a scaffolder following an accident. Until then,he had supported his wife, two children and mortgageand was taking sailing lessons with a view to sailingthe Atlantic: ‘‘There is so many ways life�s changed. Well

the obvious one, we used to have a three-storey town

house, a nice pine kitchen, fitted carpets everywhere,now we�re in a council place with unfitted carpets and

not very nice furniture’’. Roy (2001) described a similarcase of descent into poverty and social dislocation, whileBendelow and Williams (1996) identified material disad-vantage as a contributing factor to the desperation andhopelessness experienced by some of their participants,particularly the men. In our study, both interviewersnoted the phenomenon of the �sagging sofa� which ap-peared to sum up the impecunious state of many ofthe homes visited. Bill spoke emotionally of the guilthe experienced at having to rely on hand-me-downs orbuy second-hand clothes for his children. Steve reportedhe was unable even to afford the prescription charges forhis painkillers.

Several participants had applications for statutorysupport rejected, thus reinforcing their sense of loss.When Bill was no longer able keep up the mortgagerepayments on his home, he unwittingly rendered him-self �intentionally homeless� and thereby failed to qualifyfor assistance with housing. When Mike applied formobility allowance he was asked, as part of his assess-ment, to walk down the road. He achieved this in spiteof excruciating pain and thereby had his application re-jected. Of the two older participants, Beryl was in receiptof an attendance allowance, but Edna had her applica-tion turned down. However, unlike those of workingage, neither of these oldest participants complained ofeconomic loss or hardship as a direct result of their pain.

3.4. Relationship losses

Disruption of conjugal relationships emerged as a keyaspect of loss, as in previous studies (Osborne, 1995;Kelley, 1998; Smith, 2003; Roy, 2004). Bill reported thathis marriage was on the brink of collapse due to finan-cial strain and loss of their home. Irritability, moodswings, the need to be alone with suffering, and loss oftrust in a partner were all cited as reasons for maritalstrain and breakdown. Colin, aged 46, related: ‘‘my wife

even turned on me, thinking it was all put on. She came

into the bedroom one morning to find me flat on the floor,unable to move, and she naturally assumed that I was

putting it on. From that point on I�ve just lived on my

own’’. Reg described similar experiences with two ex-wives and now lived alone. Carol�s sex life had sufferedbecause her husband was terrified of touching her backfor fear of making it worse. Sue had set up home withher boyfriend but had since come to accept that theirrelationship could never be the same. She now stayedat home while he went off skiing and playing sportand was �filled with dread� about what would happenin the future. Friendship and support networks also suf-fered as a result of enforced disengagement from workand social activities outside the home. Sue commentedthat many former friends and work colleagues had de-serted her since she became disabled: ‘‘You learn a lot

about people. You find out who you can trust and who

you can�t and how people treat you’’. The two older par-ticipants, Beryl and Edna, were both widowed and reliedon their offspring to do housework and shopping. How-ever, this had actually served to maintain or even in-crease their level of family contact.

3.5. Loss of identity

Those of working age all drew a distinction betweentheir public and private selves. Pain is not visible to oth-ers and participants agonised about what others mustthink of them. If they looked �normal� they were afraidof being branded a fake (Holloway, 1994). For example,

204 J. Walker et al. / European Journal of Pain 10 (2006) 199–207

Stan, a former security guard aged 58, had been wronglyreported by neighbours for obtaining state benefits un-der false pretences. In contrast, Carol tried to put on abrave face in public to boost her own self-confidence‘‘If I can convince other people that I can carry on, Ican even convince myself . . . but when I am on my own,it is harder’’. Previous authors (Osborne and Smith,1998) noted that downward comparisons help to pro-mote positive well-being, and Reg claimed to havestopped feeling so sorry for himself after seeing peopleworse off in a unit for the physically disabled. But othersappeared to have completely lost their sense of self-esteem. Bill commented ‘‘I really dislike myself as a per-

son because of what the back pain and everything�s done tome’’. This feeling of �not being who I was� is echoed instudies by Kelley (1998) and Risdon et al. (2003). Os-borne and Smith (1998) suggested that a sense of loss re-sults from comparing self with former self-image andwith social norms. Our findings suggest that perceivedlosses are exacerbated by the responses or anticipatedresponses of other people. For example, Steve spokeof feeling the gaze of other bus passengers when hefailed to give up his seat to a pregnant women. Sue toldhow a former friend and colleague had deliberatelycrossed the road to avoid her. She observed: ‘‘what it

comes down to is self-worth, because your confidence com-

pletely goes. . . . Once that circle starts, it is just a down-

ward spiral. It is very, very hard to come out of that. . . . Iam still the same person, but people don�t see that’’.

3.6. Loss of hope

All of our participants spoke about their inability tomake plans, having to live from day to day, uncertainwhat the future might bring. Consistent with the currentliterature on fear-avoidance (Goubert et al. (2004), mostof those of working age lived in constant fear of furtherinjury, like Carol: ‘‘I�m petrified that a disc is going to popout again’’. Nevertheless, participants had some gooddays interspersed with the bad days; but as John put it‘‘you don�t have a good day until it�s gone and then you

know that was a good day’’. Eileen commented: ‘‘painis like a bereavement . . . it�s taken over my life, really it

has’’. Roy (1992) proposed that the crisis that bringsmany people to the pain clinic is the realisation that thisis the last resort, beyond which lies vulnerability to morefamily crises, disintegration, hopelessness and helpless-ness. Mike�s appraisal of his situation reflects whatFrank (1995, p. 54) described as ‘‘being shipwreckedby the storm of disease’’.

‘‘I just think I�m going to get worse and worse and worse

and eventually end up in a wheelchair, probably. You

always have hope in the beginning, don�t you? The older

you get, the smaller the ray of hope becomes. Every day

I go through, in some way or another, a bit of hell . . .

You�re stuck at home, you become a prisoner in your

own home. Your life is the pain is your cell’’

Of those interviewed, only three showed signs of com-ing to terms with their situation. The two oldest partic-ipants, Edna and Beryl, appeared to accept pain as aninevitable consequence of growing old (cf Becker,1999). The other was the youngest participant, Sue.From an objective viewpoint, Sue�s pain was the mostdisabling. However, she had a confirmed diagnosis(arachnoiditis), good support from family and friends,and attributed her positive outlook to the support andencouragement received from a complementary therapycentre since the pain clinic appointment was made. Suehad recently given an invited lecture on back care to stu-dent nurses and was now planning a career change toaccommodate her changed circumstances.

4. Discussion

The stories told by our participants speak of a cata-logue of socio-economic and other material and psycho-logical losses attributed directly to back pain. However,whereas the life changes reported were verifiable facts,loss is a perception. Traditional theories of loss (Dwor-kin and Banks, 1999; Nettleton, 1995) have emphasisedpsychological vulnerability factors in determining re-sponses to threatening life events such as pain (see alsoPincus and Morley, 2001; Gatchel et al., 2002). There-fore, in reviewing our findings, we need to consider thepossibility that back pain may have become the focusof a storied explanation for job loss, marital break-up,financial ruin, personal failures and unfulfilled hopes,designed to excuse personal inadequacy and justify theneed for help. However, the remarkable consistency ofthe stories seems to refute this explanation.

Participants� stories were filled with thoughts thatmay be conceptualised as �catastrophizing�. Catastro-phizing is defined as excessive and exaggerated pain be-liefs (Tait, 1999) associated with a tendency to magnifypain threat, worry excessively about the pain or hold anunduly pessimistic view of the ability to deal with thepain (Sullivan et al., 1995; Boothby et al., 1999; VanDamme et al., 2002). Catastrophizing is closely associ-ated with social as well as psychological functioning(Lame et al., 2005) and is widely regarded as playing acrucial role in predicting negative therapeutic outcomes(Sullivan et al., 2001; Severijns et al., 2001; Turner et al.,2002; Turk, 2002). It has been variously defined as a per-sonality trait (Spanos et al., 1979), maladaptive copingstrategy (Rosenstiel and Keefe, 1983; Nettleton, 1995)or appraisal process (Stewart et al., 2001). Cognitive-based therapies for pain (Thorn et al., 2002) are basedthe assumption that these pessimistic beliefs are a resultof cognitive distortion (Beck, 1976). Pincus and Morley

J. Walker et al. / European Journal of Pain 10 (2006) 199–207 205

(2001) propose that negative cognitive bias and feelingsof worthlessness may be a result from a particular typeof enmeshment of three schemas: pain, illness and theself. They suggest that pre-existing vulnerability in theself-schema may, in combination with the pain schema,lead to dependence and distress. Equally, the stories toldby our participants suggest that the negative materialand social consequences of back pain may be sufficientto generate feelings of worthlessness and hopelessnesseven where no latent personal vulnerability existed priorto the onset of pain. In this, our findings lend support tothe assertions of Gatchel et al. (2002) that negative cog-nitions such as catastophizing may in fact represent real-istic appraisals of tangible losses experienced as a directconsequence of having back pain.

Drawing on the work of John Bowlby, Roy (1992,2004) has conceptualised responses to pain-related lossesas grief. Responses identified as typical of grief wereclearly evident in the narratives of all participants ofworking age. These included distress, sorrow, despair,fear, worry, anger, loss of enjoyment, feeling alone,reduction in activity, feelings of failure, worthlessness,loss of purpose, difficulty in maintaining social relation-ships, pessimism, yearning, rumination, slowed think-ing, fatigue, insomnia, and loss of muscle strength(Stroebe and Stroebe, 1987). But these grief responsesare easily confounded with symptoms of chronic pain,just as symptoms of chronic pain are confounded withthose of depression (Pincus and Williams, 1999; Black-burn-Munro and Blackburn-Munro, 2002). Thus pain,loss and depression become virtually indistinguishable.Traditional �stage� theories of grief (Kubler-Ross, 1969;Parkes, 1975), based on observations of responses to ac-tual or impending death, postulate progression towardsacceptance or restitution. In contrast, Hewison�s Epi-sodic Stress Model (Hewison, 1997), based on stressand coping theory (Lazarus and Folkman, 1984), recog-nises the recurrent and cumulative hassles and crises thatprevent those living with loss of ability from achievingresolution or acceptance.

Most of the stories heard in this study were chaoticand despairing, revealing a plot that ‘‘imagines a lifenever getting better’’ (Frank, 1995, p. 97). Biographicaldisruption (Bury, 1982) may provide a useful frameworkfor understanding the impact of pain-related losses. Ger-gen and Gergen (1997) described the personal biographyas providing an essential link between past, present andfuture, leading to a sense of coherence (Antonovsky,1985), while Kelley (1998, p. 207) suggested that comingto terms with the losses associated with chronic pain re-quires �re-storying one�s life�. According to Crossley(2000) this involves re-interpreting factual events withina meaningful framework that provides a new trajectorytowards changed goals. Participants of working age inour study appeared �stuck�, looking back to how thingsused to be and forward to what will no longer be. Only

Sue showed any indication of developing what Frank(1995) termed a �quest� narrative, orientated towards anew and achievable future. Her account reflects progresstowards taking control (Risdon et al., 2003), which sheattributed to receiving non-medical therapeutic support.We did not have ethical approval to evaluate any effectsof the narrative interviews, although most participantsexpressed gratitude that they had been �listened to�. Nev-ertheless, there is increasing evidence that narrative ther-apies may help to enable those with life-changingconditions to find new meaning and purpose in theirlives (Ellis-Hill and Horn, 2000).

Though modest in scale, our study used an interviewstyle designed to gather rich data and minimise social re-sponse bias. The analysis was strengthened by indepen-dent verification of the emergent themes by an unbiasedauthority on qualitative methods. Reference to the ex-tant literature confirms the validity of the main themes.However, it is an important criticism of the samplingprocess that potentially important age-related differ-ences in perceptions of loss were not identified until afterdata collection was completed. This would not have oc-curred had we used theoretical sampling (deliberateselection of participants to test emergent theory), asadvocated in grounded theory (Holloway, 1997). Thestories told by the two older participants in our studycontained accounts of material change which did not fo-cus on loss. Both were women with good family supportwhose narratives appear typical of those found in previ-ous studies of pain in later life, in which pain and dis-ability are accommodated as part of the ageing process(Becker, 1999; Walker, 1994). This explanation main-tains a sense of coherence and may offer a contributoryreason for age-related differences in pain tolerance(Walker and Sofaer, 1998; Gibson and Helme, 2001).

In conclusion, our findings suggest that many studiesof chronic back pain have tended to focus too narrowlyon pain as the object of appraisal, and on self-referen-tial, rather than situational, explanations for cognitivebias. We recommend that it may be useful to evaluateways of helping those who hold catastrophizingthoughts to come to terms with tangible losses in prep-aration for pain management interventions aimed atgoal-setting, coping strategies and functional improve-ment. Our findings tentatively suggest that future re-search into age-related differences in pain experiencemight usefully focus on perceptions of loss and senseof coherence.

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