'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

Psychology and Health

Volumn 23, Issue 4, 2008, Pages 459-476

  Dickson, Adele ^a   Knussen, Christina ^b   Flowers, Paul ^b  

^a EDINBURGH NAPIER UNIVERSITY   (United Kingdom)

^b GLASGOW CALEDONIAN UNIVERSITY   (United Kingdom)

Author keywords

Chronic Fatigue Syndrome; Coping; Identity crisis; Interpretative phenomenological analysis; Loss of self

Indexed keywords

ADAPTIVE BEHAVIOR; ADULT; AGED; ARTICLE; CHRONIC FATIGUE SYNDROME; COPING BEHAVIOR; FEMALE; HUMAN; IDENTITY; INTERPRETATIVE PHENOMENOLOGICAL ANALYSIS; LOSS OF SELF; MALE; MIDDLE AGED; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; SOCIAL ENVIRONMENT; YOUNG ADULT;

CHRONIC FATIGUE SYNDROME; COPING; IDENTITY CRISIS; INTERPRETATIVE PHENOMENOLOGICAL ANALYSIS; LOSS OF SELF;

ADAPTATION, PSYCHOLOGICAL; ADULT; AGED; FATIGUE SYNDROME, CHRONIC; FEMALE; HUMANS; IDENTITY CRISIS; MALE; MIDDLE AGED; QUALITATIVE RESEARCH; SOCIAL ENVIRONMENT; YOUNG ADULT;

EID: 42049105957     PISSN: 08870446     EISSN: 14768321     Source Type: Journal    
DOI: 10.1080/08870440701757393     Document Type: Article

References (80)

1. Anderson, J. S., & Ferrans, C. E. (1997). The quality of life of persons with chronic fatigue syndrome. Journal of Nervous and Mental Disease, 185, 359-367.
2. Åsbring, P. (2001). Chronic illness - a disruption in life: Identity transformation among women with chronic fatigue syndrome and fibromyalgia. Journal of Advanced Nursing, 34, 312-319.
3. Åsbring, P., & Närvänen, A.-L. (2002). Women's experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia. Qualitative Health Research, 12, 148-160.
4. Åsbring, P., & Närvänen, A.-L. (2003). Ideal versus reality: Physicians' perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia. Social Science and Medicine, 57, 711-720.
5. Ax, S., Gregg, V. H., & Jones, D. (1997). Chronic fatigue syndrome: Sufferers' evaluation of medical support. Journal of the Royal Society of Medicine, 90, 250-254.
6. Barsky, A. J., & Borus, J. F. (1999). Functional somatic syndromes. Annals of Internal Medicine, 130, 910-921.
7. Bates, D. W., Buchwald, D., Lee, J., Kith, P., Doolittle, T. H., Umali, P., et al. (1994). A comparison of case definitions of chronic fatigue syndrome. Clinical Infectious Diseases, 18, S11-S15.
8. Berne, K. (1992). Running on empty - practical strategies for coping with ME. London: Bloomsbury.
9. Brocki, J. M., & Wearden, A. J. (2006). A critical evaluation of the use of interpretative phenomenological analysis (IPA) in health psychology. Psychology and Health, 21, 87-108.
10. Broom, D. H., & Woodward, R. V. (1996). Medicalisation reconsidered: Toward a collaborative approach to care. Sociology of Health and Illness, 18, 357-378.
11. Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health and Illness, 4, 167-182.
12. Butler, S., Chalder, T., Ron, M., & Wessely, S. (1991). Cognitive behaviour therapy in chronic fatigue syndrome. Journal of Neurology, Neurosurgery and Psychiatry, 54, 153-158.
13. Campion, P., Bertie, C., Chalder, T., Cox, D., Fleming, C., Lant, A., et al. (1998). National Task Force on CFSIME. NHS services for people with chronic fatigue syndrome/my algic encephalomyelitis. Bristol: Westcare.
14. Carricaburu, D., & Pierret, J. (1995). From biographical disruption to biographical reinforcement: The case of HIV positive men. Sociology of Health and Illness, 17, 65-88.
15. Carver, C. S., & Scheier, M. F. (1982). Control theory: A useful conceptual framework for personality, social, clinical, and health psychology. Psychological Bulletin, 92, 111-135.
16. Charmaz, K. (1991). Good days, bays days: The self in chronic illness and time. New Brunswick, NJ: Rutgers University Press.
17. Clarke, J. N. (2000). The search for legitimacy and the "expertization" of the lay person: The case of chronic fatigue syndrome. Social Work in Health Care, 30, 73-93.
18. Clarke, J. N., & 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, 1387-1395.
19. Clements, A., Sharpe, M., Simkin, S., Borrill, J., & Hawton, K. (1997). Chronic fatigue syndrome: A qualitative investigation of patients' beliefs about the illness. Journal of Psychosomatic Research, 42, 615-624.
20. Cooper, L. (1997). Myalgic encephalomyelitis and the medical encounter. Sociology of Health and Illness, 19, 186-207.
21. Corbin, J. M. (2003). The body in health and illness. Qualitative Health Research, 13, 256-267.
22. Deale, A., Chalder, T., Marks, I., & Wessely, S. (1997). Cognitive behaviour therapy for chronic fatigue syndrome: A randomised controlled trial. American Journal of Psychiatry, 154, 408-414.
23. Deale, A., & Wessely, S. (2001). Patients' perceptions of medical care in chronic fatigue syndrome. Social Science and Medicine, 52, 1859-1864.
24. Deary, V. (2005). Explaining the unexplained? Overcoming the distortions of a dualist understanding of medically unexplained illness. Journal of Mental Health, 14, 213-221.
25. Dickson, A., Knussen, C., & Flowers, P. (2007). Stigma and the delegitimation experience: An interpretative phenomenological analysis of people living with chronic fatigue syndrome. Psychology and Health, 22, 851-867.
26. Drageset, S., & Lindstrom, T. C. (2005). Coping with a possible breast cancer diagnosis: Demographic factors and social support. Journal of Advanced Nursing, 51, 217-226.
27. Folkman, S. (1997). Positive psychological states and coping with severe stress. Social Science and Medicine, 45, 1207-1221.
28. Friedberg, F. (1996). Chronic fatigue syndrome: A new clinical application. Professional Psychology: Research and Practice, 27, 487-494.
29. Friedberg, F., & Krupp, L. B. (1994). A comparison of cognitive behavioral treatment for chronic fatigue syndrome and primary depression. Clinical Infectious Diseases, 18, S105-S110.
30. Fukuda, K., Straus, S. E., Hickie, I., Sharpe, M. C., Dobbins, J. G., & Komaroff, A. (1994). The chronic fatigue syndrome: A comprehensive approach to its definition and study. Annals of Internal Medicine, 121, 953-959.
31. Fulcher, K. Y., & White, P. D. (1997). Randomised controlled trial of graded exercise in patients with chronic fatigue syndrome. British Medical Journal, 314, 1647-1652.
32. Giddens, A. (1979). Central problems in social theory. London: Routledge.
33. Green, J. L., Romei, J., & Natelson, B. H. (1999). Stigma and chronic fatigue syndrome. Journal of the Chronic Fatigue Syndrome, 5, 63-75.
34. Gullacksen, A.C. (1998). När smarten blir en del av livet. Livsomställning vid kronisk sjukdom och funktionshinder. (When pain becomes part of life: Coping with chronic illness and disability). Unpublished Doctoral dissertation, School of Social Work, Lund University, Sweden, 1998.
35. Heyink, J. (1993). Adaptation and well-being. Psychological Reports, 73, 1331-1342.
36. 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, 247-259.
37. Horton-Salway, M. (2004). The local production of knowledge: Disease labels, identities and category entitlements in ME support group talk. Health, 8, 351-371.
38. House, J. S., Umberson, D., & Landis, K. R. (1988). Structures and processes of social support. Annual Review of Sociology, 14, 293-318.
39. Hughes, J. L. (2002). Illness narrative and chronic fatigue syndrome/myalgic encephalomyelitis: A review. British Journal of Occupational Therapy, 65, 9-14.
40. Hyland, M. E., Sodergren, S. C., & Lewith, G. T. (2006). Chronic Fatigue Syndrome: The role of positivity to illness in chronic fatigue syndrome patients. Journal of Health Psychology, 11, 731-741.
41. Jason, L. A., Richman, J. A., Friedberg, F., Wagner, L., Taylor, R., & Jordan, K. M. (1997). Politics, science and the emergence of a new disease: The case of chronic fatigue syndrome. American Psychologist, 52, 973-983.
42. Kagawa-Singer, M. (1993). Redefining health: Living with cancer. Social Science and Medicine, 37, 295-304.
43. Lewis, S., Cooper, C. L., & Bennett, D. (1994). Psychosocial factors and chronic fatigue syndrome. Psychological Medicine, 24, 661-671.
44. Lloyd, A. R., Hickie, I., Boughton, C. R., Spencer, O., & Wakefield, D. (1990). Longitudinal study of outcome of chronic fatigue syndrome. Medical Journal of Australia, 153, 522-540.
45. Lloyd, A., Hickie, I., Brockman, A., Hickie, C., Wilson, A., Dwyer, J., et al. (1993). Immunologic and psychologic therapy for patients with chronic fatigue syndrome: A double-blind, placebo-controlled trial. American Journal of Medicine, 94, 197-203.
46. Lovell, D. M. (1999). Chronic fatigue syndrome among overseas development workers: A qualitative study. Journal of Travel Medicine, 6, 16-23.
47. Moss-Morris, R., Petrie, K. J., & Weinman, J. (1996). Functioning in chronic fatigue syndrome: Do illness perceptions play a regulatory role? British Journal of Health Psychology, 1, 15-25.
48. Ogden, J. (2002). Health and the construction of the individual. Hove, East Sussex: Routledge.
49. Osborn, M., & Smith, J. A. (1998). The personal experience of chronic benign lower back pain: An interpretative phenomenological analysis. British Journal of Health Psychology, 3, 65-84.
50. 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.
51. Prins, J. B., Bleijenberg, G., Bazelmans, E., Elving, L., de Boo, T. H., Severens, J. L., et al. (2001). Cognitive behaviour therapy for chronic fatigue syndrome: A multi-centre randomised controlled trial. Lancet, 357, 841-847.
52. Prins, J. B., Bleijenberg, G., Rouweler, E. K., van Weel, C., & van der Meer, J.W.M. (2000). Doctor-patient relationship in primary care of chronic fatigue syndrome: Perspectives of the doctor and the patient. Journal of Chronic Fatigue Syndrome, 7, 3-15.
53. Prins, J. B., van der Meer, J.W.M., & Bleijenberg, G. (2006). Chronic fatigue syndrome. The Lancet, 367, 346-355.
54. Raine, R., Carter, S., Sensky, T., & 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, 1354-1357.
55. Rotter, J. B. (1954). Social learning and clinical psychology. NY: Prentice-Hall.
56. Schweitzer, R., Kelly, B., Foran, A., Terry, D., & Whiting, J. (1995). Quality of life in chronic fatigue syndrome. Social Science and Medicine, 41, 1367-1372.
57. Seligman, M.E.P. (1975). Helplessness. San Francisco: WH Freeman.
58. Sharpe, M. C., Archard, L. C., Banatvala, J. E., Borysiewicz, L. K., Clare, A. W., David, A., et al. ( 1991). A report - chronic fatigue syndrome: Guidelines for research. Journal of the Royal Society of Medicine, 84, 118-121.
59. Sharpe, M., Hawton, K., Simkin, S., Surawy, C., Hackmann, A., Klimes, I., et al. (1996). Cognitive behavioural therapy for the chronic fatigue syndrome: a randomised controlled trial. British Medical Journal, 312, 22-26.
60. Shlaes, J. L., Jason, L. A., & Ferrari, J. R. (1999). The development of the Chronic Fatigue Syndrome Attitudes Test: a psychometric analysis. Evaluation and the Health Professions, 22, 442-465.
61. Showalter, E. (1997). Hystories - Hysterical epidemics and modern culture. London: Picador.
62. Smith, J. A. (1996). Beyond the divide between cognition and discourse: Using interpretative phenomenological analysis in health psychology. Psychology and Health, 11, 261-271.
63. Smith, J. A., & Osborn, M. (2003). Interpretative phenomenological analysis. In J. A. Smith (Ed.), Qualitative psychology: A practical guide to research methods (pp. 51-80). Thousand Oaks, CA: Sage Publications.
64. Smith, J. A., & 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, 517-534.
65. Sprangers, M. A. G., & Schwartz, C. E. (1999). Integrating response shift into health-related quality of life research: A theoretical model. Social Science & Medicine, 48, 1507-1515.
66. Surawy, C., Hackmann, A., Hawton, K., & Sharpe, M. (1995). Chronic fatigue syndrome: A cognitive approach. Behaviour Research & Therapy, 33, 535-544.
67. Tuck, I., & Human, N. (1998). The experience of living with chronic fatigue syndrome. Journal of Psychosocial Nursing & Mental Health Services, 36, 15-19.
68. Turner, J. C. (1984). Social identification and psychological group formation. In H. Tajfel (Ed.), The social dimension: European developments in social psychology (Vol. 2, pp. 518-536). Cambridge: Cambridge University Press.
69. Turner, J. C., Hogg, M. A., Oakes, P. J., Reicher, S. D., & Wetherell, M. S. (1987). Rediscovering the social group: A self-categorization theory. Oxford: Blackwell.
70. van der Linden, G., Chalder, T., Hickie, I., Koschera, A., Sham, P., & Wessely, S. (1999). Fatigue and psychiatric disorder: Different or the same? Psychological Medicine, 29, 863-868.
71. van Houdenhove, B., Neerinckx, E., Onghena, P., Vingerhoets, A., Lysens, R., & 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, 207-213.
72. van Rijen, E. H. M., Utens, E. M. W. J., Roos-Hesselink, J. W., Meijboom, F. J., van Domburg, R. T., Roelandt, J. R. T. C., et al. (2004). Medical predictors for psychopathology in adults with operated congenital heart disease. European Heart Journal, 25, 1605-1613.
73. Wallman, K. E., Morton, A. R., Goodman, C., Grove, R., & Guilfoyle, A. M. (2004). Randomised controlled trial of graded exercise in patients with chronic fatigue syndrome. Medical Journal of Australia, 180, 444-448.
74. Ware, N. (1992). Suffering and the social construction of illness: The delegitimation of illness experience in chronic fatigue syndrome. Medical Anthropology Quarterly, 6, 347-361.
75. Ware, N. C. (1998). Sociosomatics and illness course in chronic fatigue syndrome. Psychosomatic Medicine, 60, 394-401.
76. Wearden, A. J., Morriss, R. K., Mullis, R., Strickland, P. L., Pearson, D. J., Appleby, L., et al. (1998). Randomised, double-blind, placebo-controlled treatment trial of fluoxetine and graded exercise for chronic fatigue syndrome. British Journal of Psychiatry, 172, 485-490.
77. Wessely, S., Nimnuan, C., & Sharpe, M. (1999). Functional somatic syndromes: One or many? Lancet, 354, 936-939.
78. Wessely, S., & Sharpe, M. (1995). Chronic fatigue and chronic fatigue syndrome. In R. Mayou, M. Sharpe & C. Bass (Eds), The nature and treatment of somatic symptoms (pp. 285-312). Oxford: Oxford University Press.
79. Wessely, S., & White, P. D. (2004). There is only one functional somatic syndrome. British Journal of Psychiatry, 185, 95-96.
80. Yoshida, K. K. (1993). Reshaping of self: A pendular reconstruction of self and identity among adults with traumatic spinal cord injury. Sociology of Health and Illness, 15, 217-245.