The third shift: Health, work and expertise among women with endometriosis

Abstract This paper explores the experiences of twenty Australian women living with the chronic and incurable gynaecological condition endometriosis. It examines how women become experts in their own care and the ramifications of these processes for women. Women experience patient expertise as a form of work, described here as a ‘third shift’ performed in addition to women’s paid and unpaid work. It argues that both benefits and problems flow from such work, which involves the acquisition of expertise about a chronic illness and associated processes of self-management. The central argument of this paper is that the responsibilities associated with becoming an expert endometriosis patient can both reduce and compound existing stresses for women living with this chronic illness. It concludes with some suggestions about improvements to support women living with this chronic condition.

[1]  S. Fullagar Governing the Healthy Body: Discourses of Leisure and Lifestyle within Australian Health Policy , 2002 .

[2]  C. Chesla,et al.  Relational Patterns of Couples Living With Chronic Pelvic Pain From Endometriosis , 2007, Qualitative health research.

[3]  A. Singleton “Men’s Bodies, Men’s Selves”: Men’s Health Self-Help Books and the Promotion of Health Care , 2003 .

[4]  The active citizen works hard: living with chronic heart failure , 2002 .

[5]  A. M. Canesqui The Sociology of health and illness , 2010 .

[6]  B. Rothman The Tentative Pregnancy: Amniocentesis and the Sexual Politics of Motherhood , 1994 .

[7]  R. Garry,et al.  The effects and effectiveness of laparoscopic excision of endometriosis: a prospective study with 2-5 year follow-up. , 2004, Human reproduction.

[8]  C. Macintyre From entitlement to obligation in the Australian welfare state , 1999 .

[9]  A. Prentice Epidemiology of endometriosis. , 1993, BMJ.

[10]  J. Stacey Teratologies: A Cultural Study of Cancer , 1997 .

[11]  Graham D. Burchell Liberal government and techniques of the self , 1993 .

[12]  Nikolas Rose,et al.  Genetic risk and the birth of the somatic individual , 2000, The Body.

[13]  C. J. Fries Governing the health of the hybrid self: Integrative medicine, neoliberalism, and the shifting biopolitics of subjectivity , 2008 .

[14]  A. Petersen The best experts: the narratives of those who have a genetic condition. , 2006, Social science & medicine.

[15]  C. Ski,et al.  Endometriosis, an unknown entity: the consumer's perspective , 2003 .

[16]  R. Crawford Healthism and the Medicalization of Everyday Life , 1980, International journal of health services : planning, administration, evaluation.

[17]  K. Charmaz,et al.  Loss of self: a fundamental form of suffering in the chronically ill. , 1983, Sociology of health & illness.

[18]  K. Seear,et al.  ‘Standing up to the beast’: contradictory notions of control, un/certainty and risk in the endometriosis self-help literature , 2009 .

[19]  S. Kennedy,et al.  Development of an Endometriosis Quality‐of‐Life Instrument: The Endometriosis Health Profile‐30 , 2001, Obstetrics and gynecology.

[20]  Stephen Peckham,et al.  Sociology of Health and Illness , 2004 .

[21]  Helen Cox,et al.  Focus group study of endometriosis: struggle, loss and the medical merry-go-round. , 2003, International journal of nursing practice.

[22]  A. Hochschild,et al.  The Second Shift: Working Parents And The Revolution , 1990 .

[23]  Van Gosse,et al.  Boston Women’s Health Book Collective , 2005 .

[24]  C. Orona,et al.  Teratologies: A Cultural Study of Cancer , 1998 .

[25]  C. Guell Painful Childhood: Children Living With Juvenile Arthritis , 2007, Qualitative health research.

[26]  B. Davies,et al.  Gender economies: literacy and the gendered production of neo‐liberal subjectivities , 2007 .

[27]  E. Denny,et al.  Endometriosis-associated dyspareunia: the impact on women's lives , 2007, Journal of Family Planning and Reproductive Health Care.

[28]  N. Rose Government and control , 2000 .

[29]  M. Bury Chronic illness as biographical disruption. , 1982, Sociology of health & illness.

[30]  A. Broom The eMale , 2005 .

[31]  D. Cramer,et al.  The epidemiology of endometriosis. , 2003, Progress in clinical and biological research.

[32]  D. Barlow,et al.  Delay in the diagnosis of endometriosis: a survey of women from the USA and the UK. , 1996, Human reproduction.

[33]  Anselm L. Strauss,et al.  Unending work and care: Managing chronic illness at home. , 1989 .

[34]  H. Cox,et al.  Learning to take charge: women's experiences of living with endometriosis. , 2003, Complementary therapies in nursing & midwifery.

[35]  H. Rimke GOVERNING CITIZENS THROUGH SELF-HELP LITERATURE , 2000 .

[36]  M. Hardey Doctor in the house: the Internet as a source of lay health knowledge and the challenge to expertise , 1999 .

[37]  C. Newman,et al.  ‘Everything is okay’: The influence of neoliberal discourse on the reported experiences of Aboriginal people in Western Australia who are HIV‐positive , 2007, Culture, health & sexuality.

[38]  A. Strauss,et al.  Managing chronic illness at home: Three lines of work , 1985 .