‘That was my old life; it's almost like a past-life now’: Identity crisis, loss and adjustment amongst people living with Chronic Fatigue Syndrome

References

• Anderson , JS and Ferrans , CE . 1997 . The quality of life of persons with chronic fatigue syndrome . Journal of Nervous and Mental Disease , 185 ( 6 ) : 359 – 367 .
   PubMed Web of Science ®Google Scholar
• Åsbring , P . 2001 . Chronic illness – a disruption in life: Identity transformation among women with chronic fatigue syndrome and fibromyalgia . Journal of Advanced Nursing , 34 ( 3 ) : 312 – 319 .
   PubMed Web of Science ®Google Scholar
• Åsbring , P and Närvänen , A-L . 2002 . Women's experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia . Qualitative Health Research , 12 ( 2 ) : 148 – 160 .
   PubMed Web of Science ®Google Scholar
• Åsbring , P and Närvänen , A-L . 2003 . Ideal versus reality: Physicians’ perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia . Social Science and Medicine , 57 ( 4 ) : 711 – 720 .
   PubMed Web of Science ®Google Scholar
• Ax , S , Gregg , VH and Jones , D . 1997 . Chronic fatigue syndrome: Sufferers’ evaluation of medical support . Journal of the Royal Society of Medicine , 90 ( 5 ) : 250 – 254 .
   PubMedGoogle Scholar
• Barsky , AJ and Borus , JF . 1999 . Functional somatic syndromes . Annals of Internal Medicine , 130 ( 11 ) : 910 – 921 .
   PubMed Web of Science ®Google Scholar
• Bates , DW , Buchwald , D , Lee , J , Kith , P , Doolittle , TH Umali , P . 1994 . A comparison of case definitions of chronic fatigue syndrome . Clinical Infectious Diseases , 18 ( Suppl. 1 ) : S11 – S15 .
   PubMedGoogle Scholar
• Bates , D , Buchwald , D , Lee , J , Kith , P , Doolittle , TH Umali , P . 1994 . A comparison of case definitions of chronic fatigue syndrome . Clinical Infectious Diseases , 18 : S11 – S15 .
   PubMedGoogle Scholar
• Berne , K . 1992 . Running on empty – practical strategies for coping with ME , London : Bloomsbury .
   Google Scholar
• Brocki , JM and Wearden , AJ . 2006 . A critical evaluation of the use of interpretative phenomenological analysis (IPA) in health psychology . Psychology and Health , 21 ( 1 ) : 87 – 108 .
   Web of Science ®Google Scholar
• Broom , DH and Woodward , RV . 1996 . Medicalisation reconsidered: Toward a collaborative approach to care . Sociology of Health and Illness , 18 ( 3 ) : 357 – 378 .
   Web of Science ®Google Scholar
• Bury , M . 1982 . Chronic illness as biographical disruption . Sociology of Health and Illness , 4 ( 2 ) : 167 – 182 .
   PubMedGoogle Scholar
• Butler , S , Chalder , T , Ron , M and Wessely , S . 1991 . Cognitive behaviour therapy in chronic fatigue syndrome . Journal of Neurology, Neurosurgery and Psychiatry , 54 ( 2 ) : 153 – 158 .
   PubMed Web of Science ®Google Scholar
• Campion , P , Bertie , C , Chalder , T , Cox , D , Fleming , C Lant , A . 1998 . National Task Force on CFS/ME. NHS services for people with chronic fatigue syndrome/myalgic encephalomyelitis , Bristol : Westcare .
   Google Scholar
• Carricaburu , D and Pierret , J . 1995 . From biographical disruption to biographical reinforcement: The case of HIV positive men . Sociology of Health and Illness , 17 ( 1 ) : 65 – 88 .
   Web of Science ®Google Scholar
• Carver , CS and Scheier , MF . 1982 . Control theory: A useful conceptual framework for personality, social, clinical, and health psychology . Psychological Bulletin , 92 ( 1 ) : 111 – 135 .
   PubMed Web of Science ®Google Scholar
• Charmaz , K . 1991 . Good days, bays days: The self in chronic illness and time , New Brunswick, NJ : Rutgers University Press .
   Google Scholar
• Clarke , JN . 2000 . The search for legitimacy and the “expertization” of the lay person: The case of chronic fatigue syndrome . Social Work in Health Care , 30 ( 3 ) : 73 – 93 .
   PubMed Web of Science ®Google Scholar
• Clarke , JN and James , S . 2003 . The radicalized self: The impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome . Social Science and Medicine , 57 ( 8 ) : 1387 – 1395 .
   PubMed Web of Science ®Google Scholar
• Clements , A , Sharpe , M , Simkin , S , Borrill , J and Hawton , K . 1997 . Chronic fatigue syndrome: A qualitative investigation of patients’ beliefs about the illness . Journal of Psychosomatic Research , 42 ( 6 ) : 615 – 624 .
   PubMed Web of Science ®Google Scholar
• Cooper , L . 1997 . Myalgic encephalomyelitis and the medical encounter . Sociology of Health and Illness , 19 ( 6 ) : 186 – 207 .
   Google Scholar
• Corbin , JM . 2003 . The body in health and illness . Qualitative Health Research , 13 ( 2 ) : 256 – 267 .
   PubMed Web of Science ®Google Scholar
• Deale , A , Chalder , T , Marks , I and Wessely , S . 1997 . Cognitive behaviour therapy for chronic fatigue syndrome: A randomised controlled trial . American Journal of Psychiatry , 154 ( 3 ) : 408 – 414 .
   PubMed Web of Science ®Google Scholar
• Deale , A and Wessely , S . 2001 . Patients’ perceptions of medical care in chronic fatigue syndrome . Social Science and Medicine , 52 ( 12 ) : 1859 – 1864 .
   PubMed Web of Science ®Google Scholar
• Deary , V . 2005 . Explaining the unexplained? Overcoming the distortions of a dualist understanding of medically unexplained illness . Journal of Mental Health , 14 ( 3 ) : 213 – 221 .
   Google Scholar
• Dickson , A , Knussen , C and Flowers , P . 2007 . Stigma and the delegitimation experience: An interpretative phenomenological analysis of people living with chronic fatigue syndrome . Psychology and Health , 22 ( 7 ) : 851 – 867 .
   Web of Science ®Google Scholar
• Drageset , S and Lindstr⊘m , TC . 2005 . Coping with a possible breast cancer diagnosis: Demographic factors and social support . Journal of Advanced Nursing , 51 ( 3 ) : 217 – 226 .
   PubMed Web of Science ®Google Scholar
• Folkman , S . 1997 . Positive psychological states and coping with severe stress . Social Science and Medicine , 45 ( 8 ) : 1207 – 1221 .
   PubMed Web of Science ®Google Scholar
• Friedberg , F . 1996 . Chronic fatigue syndrome: A new clinical application . Professional Psychology: Research and Practice , 27 ( 5 ) : 487 – 494 .
   Web of Science ®Google Scholar
• Friedberg , F and Krupp , LB . 1994 . A comparison of cognitive behavioral treatment for chronic fatigue syndrome and primary depression . Clinical Infectious Diseases , 18 ( Suppl. 1 ) : S105 – S110 .
   PubMed Web of Science ®Google Scholar
• Fukuda , K , Straus , SE , Hickie , I , Sharpe , MC , Dobbins , JG and Komaroff , A . 1994 . The chronic fatigue syndrome: A comprehensive approach to its definition and study . Annals of Internal Medicine , 121 ( 12 ) : 953 – 959 .
   PubMed Web of Science ®Google Scholar
• Fulcher , KY and White , PD . 1997 . Randomised controlled trial of graded exercise in patients with chronic fatigue syndrome . British Medical Journal , 314 ( 7095 ) : 1647 – 1652 .
   PubMed Web of Science ®Google Scholar
• Giddens , A . 1979 . Central problems in social theory , London : Routledge .
   Google Scholar
• Green , JL , Romei , J and Natelson , BH . 1999 . Stigma and chronic fatigue syndrome . Journal of the Chronic Fatigue Syndrome , 5 ( 2 ) : 63 – 75 .
   Google Scholar
• Gullacksen , AC . 1998 . “ När smärten blir en del av livet. Livsomställning vid kronisk sjukdom och funktionshinder. (When pain becomes part of life: Coping with chronic illness and disability) ” . In Unpublished Doctoral dissertation , Sweden : School of Social Work, Lund University . 1998
   Google Scholar
• Heyink , J . 1993 . Adaptation and well-being . Psychological Reports , 73 ( 3 ) : 1331 – 1342 .
   PubMedGoogle Scholar
• Horton-Salway , M . 2001 . Narrative identities and the management of personal accountability in talk about ME: A discursive psychology approach to illness narrative . Journal of Health Psychology , 6 ( 2 ) : 247 – 259 .
   PubMed Web of Science ®Google Scholar
• Horton-Salway , M . 2004 . The local production of knowledge: Disease labels, identities and category entitlements in ME support group talk . Health , 8 ( 3 ) : 351 – 371 .
   PubMedGoogle Scholar
• House , JS , Umberson , D and Landis , KR . 1988 . Structures and processes of social support . Annual Review of Sociology , 14 ( 2 ) : 293 – 318 .
   Google Scholar
• Hughes , JL . 2002 . Illness narrative and chronic fatigue syndrome/myalgic encephalomyelitis: A review . British Journal of Occupational Therapy , 65 ( 1 ) : 9 – 14 .
   Google Scholar
• Hyland , ME , Sodergren , SC and Lewith , GT . 2006 . Chronic Fatigue Syndrome: The role of positivity to illness in chronic fatigue syndrome patients . Journal of Health Psychology , 11 ( 1 ) : 731 – 741 .
   PubMedGoogle Scholar
• Jason , LA , Richman , JA , Friedberg , F , Wagner , L , Taylor , R and Jordan , KM . 1997 . Politics, science and the emergence of a new disease: The case of chronic fatigue syndrome . American Psychologist , 52 ( 9 ) : 973 – 983 .
   PubMed Web of Science ®Google Scholar
• Kagawa-Singer , M . 1993 . Redefining health: Living with cancer . Social Science and Medicine , 37 ( 3 ) : 295 – 304 .
   PubMed Web of Science ®Google Scholar
• Lewis , S , Cooper , CL and Bennett , D . 1994 . Psychosocial factors and chronic fatigue syndrome . Psychological Medicine , 24 ( 3 ) : 661 – 671 .
   PubMed Web of Science ®Google Scholar
• Lloyd , AR , Hickie , I , Boughton , CR , Spencer , O and Wakefield , D . 1990 . Longitudinal study of outcome of chronic fatigue syndrome . Medical Journal of Australia , 153 ( 9 ) : 522 – 540 .
   PubMed Web of Science ®Google Scholar
• Lloyd , A , Hickie , I , Brockman , A , Hickie , C , Wilson , A Dwyer , J . 1993 . Immunologic and psychologic therapy for patients with chronic fatigue syndrome: A double-blind, placebo-controlled trial . American Journal of Medicine , 94 ( 2 ) : 197 – 203 .
   PubMedGoogle Scholar
• Lovell , DM . 1999 . Chronic fatigue syndrome among overseas development workers: A qualitative study . Journal of Travel Medicine , 6 ( 1 ) : 16 – 23 .
   PubMedGoogle Scholar
• Moss-Morris , R , Petrie , KJ and Weinman , J . 1996 . Functioning in chronic fatigue syndrome: Do illness perceptions play a regulatory role? . British Journal of Health Psychology , 1 ( 1 ) : 15 – 25 .
   Web of Science ®Google Scholar
• Ogden , J . 2002 . Health and the construction of the individual , Hove, , East Sussex : Routledge .
   Google Scholar
• Osborn , M and Smith , JA . 1998 . The personal experience of chronic benign lower back pain: An interpretative phenomenological analysis . British Journal of Health Psychology , 3 ( 1 ) : 65 – 84 .
   Google Scholar
• Pleby , D . 1999 . Working Group on Chronic Fatigue/Myalgic Encephalomyelitis. Discussion document: An overview of the recent research literature , Bristol : University of the West of England .
   Google Scholar
• Prins , JB , Bleijenberg , G , Bazelmans , E , Elving , L , de Boo , TH Severens , JL . 2001 . Cognitive behaviour therapy for chronic fatigue syndrome: A multi-centre randomised controlled trial . Lancet , 357 ( 9259 ) : 841 – 847 .
   PubMed Web of Science ®Google Scholar
• Prins , JB , Bleijenberg , G , Rouweler , EK , van Weel , C and van der Meer , JWM . 2000 . Doctor-patient relationship in primary care of chronic fatigue syndrome: Perspectives of the doctor and the patient . Journal of Chronic Fatigue Syndrome , 7 ( 4 ) : 3 – 15 .
   Google Scholar
• Prins , JB , van der Meer , JWM and Bleijenberg , G . 2006 . Chronic fatigue syndrome . The Lancet , 367 ( 9507 ) : 346 – 355 .
   PubMed Web of Science ®Google Scholar
• Raine , R , Carter , S , Sensky , T and Black , N . 2004 . General practitioners’ perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: Qualitative study . British Medical Journal , 328 ( 7452 ) : 1354 – 1357 .
   PubMed Web of Science ®Google Scholar
• Rotter , JB . 1954 . Social learning and clinical psychology , NY : Prentice-Hall .
   Google Scholar
• Schweitzer , R , Kelly , B , Foran , A , Terry , D and Whiting , J . 1995 . Quality of life in chronic fatigue syndrome . Social Science and Medicine , 41 ( 10 ) : 1367 – 1372 .
   PubMed Web of Science ®Google Scholar
• Seligman , MEP . 1975 . Helplessness , San Francisco : WH Freeman .
   Google Scholar
• Sharpe , MC , Archard , LC , Banatvala , JE , Borysiewicz , LK , Clare , AW David , A . 1991 . A report – chronic fatigue syndrome: Guidelines for research . Journal of the Royal Society of Medicine , 84 ( 2 ) : 118 – 121 .
   PubMed Web of Science ®Google Scholar
• Sharpe , M , Hawton , K , Simkin , S , Surawy , C , Hackmann , A Klimes , I . 1996 . Cognitive behavioural therapy for the chronic fatigue syndrome: a randomised controlled trial . British Medical Journal , 312 ( 7038 ) : 22 – 26 .
   PubMedGoogle Scholar
• Shlaes , JL , Jason , LA and Ferrari , JR . 1999 . The development of the Chronic Fatigue Syndrome Attitudes Test: a psychometric analysis . Evaluation and the Health Professions , 22 ( 4 ) : 442 – 465 .
   PubMedGoogle Scholar
• Showalter , E . 1997 . Hystories – Hysterical epidemics and modern culture , London : Picador .
   Google Scholar
• Smith , JA . 1996 . Beyond the divide between cognition and discourse: Using interpretative phenomenological analysis in health psychology . Psychology and Health , 11 ( 2 ) : 261 – 271 .
   Web of Science ®Google Scholar
• Smith , JA and Osborn , M . 2003 . “ Interpretative phenomenological analysis ” . In Qualitative psychology: A practical guide to research methods , Edited by: Smith , JA . 51 – 80 . Thousand Oaks, CA : Sage Publications .
   Google Scholar
• Smith , JA and Osborn , M . 2007 . Pain as an assault on the self: An interpretative phenomenological analysis of the psychological impact of chronic benign low back pain . Psychology and Health , 22 ( 5 ) : 517 – 534 .
   Web of Science ®Google Scholar
• Sprangers , MAG and Schwartz , CE . 1999 . Integrating response shift into health-related quality of life research: A theoretical model . Social Science & Medicine , 48 ( 11 ) : 1507 – 1515 .
   PubMed Web of Science ®Google Scholar
• Surawy , C , Hackmann , A , Hawton , K and Sharpe , M . 1995 . Chronic fatigue syndrome: A cognitive approach . Behaviour Research & Therapy , 33 ( 5 ) : 535 – 544 .
   PubMed Web of Science ®Google Scholar
• Tuck , I and Human , N . 1998 . The experience of living with chronic fatigue syndrome . Journal of Psychosocial Nursing & Mental Health Services , 36 ( 2 ) : 15 – 19 .
   PubMedGoogle Scholar
• Turner , JC . 1984 . “ Social identification and psychological group formation ” . In The social dimension: European developments in social psychology , Edited by: Tajfel , H . Vol. 2 , 518 – 536 . Cambridge : Cambridge University Press .
   Google Scholar
• Turner , JC , Hogg , MA , Oakes , PJ , Reicher , SD and Wetherell , MS . 1987 . Rediscovering the social group: A self-categorization theory , Oxford : Blackwell .
   Google Scholar
• van der Linden , G , Chalder , T , Hickie , I , Koschera , A , Sham , P and Wessely , S . 1999 . Fatigue and psychiatric disorder: Different or the same? . Psychological Medicine , 29 ( 4 ) : 863 – 868 .
   PubMedGoogle Scholar
• van Houdenhove , B , Neerinckx , E , Onghena , P , Vingerhoets , A , Lysens , R and Vertommen , H . 2002 . Daily hassles reported by chronic fatigue syndrome and fibromyalgia patients in tertiary care: A controlled quantitative and qualitative study . Psychotherapy & Psychosomatics , 71 ( 4 ) : 207 – 213 .
   PubMedGoogle Scholar
• van Rijen , EHM , Utens , EMWJ , Roos-Hesselink , JW , Meijboom , FJ , van Domburg , RT Roelandt , JRTC . 2004 . Medical predictors for psychopathology in adults with operated congenital heart disease . European Heart Journal , 25 ( 18 ) : 1605 – 1613 .
   PubMed Web of Science ®Google Scholar
• Wallman , KE , Morton , AR , Goodman , C , Grove , R and Guilfoyle , AM . 2004 . Randomised controlled trial of graded exercise in patients with chronic fatigue syndrome . Medical Journal of Australia , 180 ( 9 ) : 444 – 448 .
   PubMed Web of Science ®Google Scholar
• Ware , N . 1992 . Suffering and the social construction of illness: The delegitimation of illness experience in chronic fatigue syndrome . Medical Anthropology Quarterly , 6 ( 4 ) : 347 – 361 .
   Web of Science ®Google Scholar
• Ware , NC . 1998 . Sociosomatics and illness course in chronic fatigue syndrome . Psychosomatic Medicine , 60 ( 4 ) : 394 – 401 .
   PubMed Web of Science ®Google Scholar
• Wearden , AJ , Morriss , RK , Mullis , R , Strickland , PL , Pearson , DJ Appleby , L . 1998 . Randomised, double-blind, placebo-controlled treatment trial of fluoxetine and graded exercise for chronic fatigue syndrome . British Journal of Psychiatry , 172 ( 89 ) : 485 – 490 .
   PubMedGoogle Scholar
• Wessely , S , Nimnuan , C and Sharpe , M . 1999 . Functional somatic syndromes: One or many? . Lancet , 354 ( 9182 ) : 936 – 939 .
   PubMed Web of Science ®Google Scholar
• Wessely , S and Sharpe , M . 1995 . “ Chronic fatigue and chronic fatigue syndrome ” . In The nature and treatment of somatic symptoms , Edited by: Mayou , R , Sharpe , M and Bass , C . 285 – 312 . Oxford : Oxford University Press .
   Google Scholar
• Wessely , S and White , PD . 2004 . There is only one functional somatic syndrome . British Journal of Psychiatry , 185 ( 2 ) : 95 – 96 .
   PubMedGoogle Scholar
• Yoshida , KK . 1993 . Reshaping of self: A pendular reconstruction of self and identity among adults with traumatic spinal cord injury . Sociology of Health and Illness , 15 ( 2 ) : 217 – 245 .
   Web of Science ®Google Scholar