Diagnosis: A Liminal State for Women Living With Lupus

REFERENCES

• Alarcón , G. S. 2000 . Unclassified or undifferentiated connective tissue disease . Clinical Rheumatology , 14 ( 2 ) : 125 – 137 .
   Google Scholar
• Alarcón , G. S. , McGwin , G. , Roseman , J. M. , Uribe , A. , Fessler , B. J. Bastian , H. M. 2004 . Systemic lupus erythematosus in three ethnic groups. XIX. Natural history of the accrual of the American College of Rheumatology criteria prior to the occurrence of criteria diagnosis . Arthritis and Rheumatism , 51 : 609 – 615 .
   Google Scholar
• Alexander , L. 1982 . “ Illness maintenance and the new American sick role ” . In Clinically applied anthropology , Edited by: Chrisman , N. J. and Maretski , T. W. 351 – 367 . Dordrecht, , Holland : Reidel Publishing .
   Google Scholar
• Andersen , J. O. 2002 . Illness, liminality and attachment to narratives. Anthropological approaches towards medically unexplained physical symptoms , Aarhus, , Denmark : University of Aarhus . (Working paper no. 101–01) Retrieved June 1, 2006, from http://www.hum.au.dk/ckulturf/pages/publications/ja/illness.htm
   Google Scholar
• Arber , S. , McKinlay , J. , Adams , A. , Marceau , L. , Link , C. and D’Donnell , A. 2006 . Patient characteristic and inequalities in doctors’ diagnostic and management strategies relating to CHD: A video simulation experiment . Social Science and Medicine , 62 : 103 – 115 .
   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 : 213 – 319 .
   Google Scholar
• Åsbring , P. and Närvänen , A.-L. 2002 . Women's experience of stigma in relation to chronic fatigue syndrome and fibromyalgia . Qualitative Health Research , 12 : 148 – 160 .
   PubMed Web of Science ®Google Scholar
• Åsbring , P. and Närvänen , A.-L. 2003 . Ideal versus reality: Physicians perspective on patients with chronic fatigue syndrome (CFS) and fibromyalgia . Social Science and Medicine , 57 : 711 – 720 .
   PubMed Web of Science ®Google Scholar
• Berktakis , K. D. , Helms , J. L. , Callahan , E. J. , Azari , R. , Leigh , P. and Robbins , J. A. 2001 . Patient gender difference in the diagnosis of depression in primary care . Journal of Women's Health and Gender-Based Medicine , 10 : 689 – 698 .
   Google Scholar
• Campbell , J. C. and Bunting , S. 1991 . Voices and paradigms: Perspectives on critical and feminist theory in nursing . Advances in Nursing Science , 13 ( 3 ) : 1 – 15 .
   PubMed Web of Science ®Google Scholar
• Chen , W. , Woods , S. L. , Wilkie , D. J. and Puntillo , K. A. 2005 . Gender difference in symptom experience of patients with acute coronary syndromes . Journal of Pain and Symptom Management , 30 : 553 – 562 .
   Google Scholar
• Chervin , R. D. 2000 . Sleepiness, fatigue, tiredness, and lack of energy in obstructive sleep apnea . Chest , 118 : 372 – 379 .
   PubMed Web of Science ®Google Scholar
• Chrisler , J. C. 2001 . How can feminist therapists support women with autoimmune disorders . Women and Therapy , 23 ( 1 ) : 7 – 22 .
   Web of Science ®Google Scholar
• Daly , C. , Clemens , F. , Lopez Sendon , J. L. , Tavazzi , L. , Boersma , E. Danchin , N. 2006 . Gender difference in the management and clinical outcome of stable angina . Circulation , 113 : 490 – 498 .
   PubMed Web of Science ®Google Scholar
• Forrest , C. B. 2003 . Primary care gate keeping and referrals: Effective filter or failed experiment? . British Medical Journal , 326 ( 7391 ) : 692 – 695 .
   PubMed Web of Science ®Google Scholar
• Frank , A. 1995 . “ The wounded storyteller: Body, illness, and ethics ” . Chicago : University of Chicago Press .
   Google Scholar
• Glenton , C. 2003 . Chronic back pain suffers—Striving for the sick role . Social Science and Medicine , 57 : 2243 – 2252 .
   PubMed Web of Science ®Google Scholar
• Grossman , J. M. and Kalunian , K. C. 2002 . “ Definition, classification, activity and damage indices ” . In Dubois’ lupus erythematosus ed. , 6th , Edited by: Wallace , D. J. and Hahn , B. H. 19 – 31 . Philadelphia : Lippincott Williams and Wilkins .
   Google Scholar
• Hale , E. D. , Treharne , G. J. , Lyons , A. C. , Norton , Y. , Mole , S. Mitton , D. L. 2006 . “Joining the dots” for patients with systemic lupus erythematosus: Personal perspectives of health care from a qualitative study . Annals of the Rheumatic Diseases , 65 : 585 – 589 .
   PubMed Web of Science ®Google Scholar
• Hamberg , K. , Risberg , G. , Johansson , E. E. and Westman , G. 2002 . Gender bias in physician's management of neck pain: A study of the answers in a Swedish national examination . Journal of Women's Health and Gender Based Medicine , 11 : 653 – 665 .
   PubMedGoogle Scholar
• Harding , G. , Parsons , S. , Rahman , A. and Underwood , M. 2005 . “It struck me that they didn't understand pain”: The specialist pain clinic experience of patients with chronic musculoskeletal pain . Arthritis and Rheumatism , 53 : 691 – 696 .
   PubMed Web of Science ®Google Scholar
• Harrison , T. C. and Kahn , D. L. 2004 . Disability rites: The cultural shift following impairment . Family and Community Health , 27 ( 1 ) : 86 – 93 .
   Google Scholar
• Kirmayer , L. 1986 . “ Somatization and the social construction of illness experience ” . In Illness behavior: A multidisciplinary model , Edited by: McHugh , S. and Vallis , T. 111 – 133 . New York : Plenum Press .
   Google Scholar
• Kleinman , A. 1988 . The illness narratives: Suffering, healing and the human condition , New York : Basic Books .
   Google Scholar
• Kuper , B. C. and Failla , S. 2000 . Systemic lupus erythematosus: A multisystem autoimmune disorder . Nursing Clinics of North America , 35 ( 1 ) : 253 – 265 .
   Google Scholar
• Larsson , L.-G. , Linderg , A. , Franklin , K. A. and Lundbäck , B. 2003 . Gender difference in symptoms related to sleep apnea in a general population and in relation to referral to sleep clinic . Chest , 124 : 204 – 211 .
   PubMed Web of Science ®Google Scholar
• Levin , N. , Mor , M. and Ben-Hur , T. 2003 . Patterns of misdiagnosis of multiple sclerosis . Israel Medical Association Journal , 5 : 489 – 490 .
   PubMed Web of Science ®Google Scholar
• Lillrank , A. 2003 . Back pain and the resolution of diagnostic uncertainty in illness narratives . Social Science and Medicine , 57 : 1045 – 1054 .
   PubMed Web of Science ®Google Scholar
• Little , M. , Jordens , C. F.C. , Paul , K. , Montgomery , K. and Philipson , B. 1998 . Liminality: A major category of the experience of cancer illness . Social Science and Medicine , 47 : 1485 – 1494 .
   PubMed Web of Science ®Google Scholar
• Looper , K. J. and Kirmayer , L. J. 2004 . Perceived stigma in functional somatic syndromes and comparable medical conditions . Journal of Psychosomatic Research , 57 : 373 – 378 .
   PubMed Web of Science ®Google Scholar
• Lupus Foundation of America (LFA) . 2001 . Statistics about lupus Retrieved August 14, 2006, from http://lupus.org/education/stats.html
   Google Scholar
• Macintyre , S. , Ford , G. and Hunt , K. 1999 . Do women “over-report” morbidity? Men's and women's responses to structured prompting on a standard question on long standing illness . Social Science and Medicine , 48 : 89 – 98 .
   PubMed Web of Science ®Google Scholar
• Malterud , K. 1999 . The (gendered) construction of diagnosis interpretation of medical sign in women patients . Theoretical Medicine and Bioethics , 20 : 275 – 286 .
   PubMed Web of Science ®Google Scholar
• Martin-McDonald , K. and Biernoff , D. 2002 . Initiation into a dialysis-dependent life: An examination of rites of passage . Nephrology Nursing Journal , 29 : 347 – 352 .
   PubMedGoogle Scholar
• Mattingly , C. 1998 . Healing dramas and clinical plots: The narrative structure of experience , Cambridge, , UK : Cambridge University Press .
   Google Scholar
• Mendelson , C. 2003 . Gentle hugs: Listservs as sources of support for women with lupus . Advances in Nursing Science , 26 : 299 – 306 .
   Google Scholar
• Mendelson , C. 2006 . Managing a medically and socially complex life: Women living with lupus . Qualitative Health Research , 16 : 982 – 997 .
   PubMed Web of Science ®Google Scholar
• Mendelson , C. 2007 . Recruiting participants for qualitative research from online communities . Computers, Informatics and Nursing , 25 : 317 – 323 .
   PubMed Web of Science ®Google Scholar
• Murphy , R. F. , Scheer , J. , Murphy , Y. and Mack , R. 1988 . Physical disability and social liminality: A study in the rituals of adversity . Social Science and Medicine , 23 : 235 – 242 .
   Google Scholar
• Mwaria , C. B. 1990 . The concept of self in the context of crisis: A study of families of the severely brain-injured . Social Science and Medicine , 30 : 889 – 893 .
   PubMedGoogle Scholar
• Narain , S. , Richards , H. B. , Satoh , M. , Sarmiento , M. , Davidson , R. Shuster , J. 2004 . Diagnostic accuracy for lupus and other systemic autoimmune diseases in the community setting . Archives of Internal Medicine , 164 : 2435 – 2441 .
   PubMed Web of Science ®Google Scholar
• National Institutes of Health . 2000 . Report of the Autoimmune Diseases Coordinating Committee Retrieved April 10, 2003, from http://www.niaid.nih.gov/dait/pdf/adccrev.pdf
   Google Scholar
• Navon , L. and Morag , A. 2004 . Liminality as biographical disruption: Unclassifiability following hormonal therapy for advanced prostate cancer . Social Science and Medicine , 58 : 2337 – 2347 .
   PubMed Web of Science ®Google Scholar
• Nimnuan , C. , Hotopf , M. and Wessely , S. 2000 . Medically unexplained symptoms: How often and why are they missed? . Quarterly Journal of Medicine , 93 ( 21 ) : 21 – 28 .
   Google Scholar
• Nonnecke , B. , Preece , J. and Andrews , D. . Paper presented at the 37th Hawaii International Conference on System Sciences . Maui, HI. What lurkers and posters think of each other ,
   Google Scholar
• Ochberg , R. L. 1994 . “ Life stories and storied lives ” . In Exploring identity and gender: The narrative study of lives , Edited by: Lieblich , A. and Josselson , R. 113 – 144 . Thousand Oaks, CA : Sage .
   Google Scholar
• Orth-Gomer , K. 2000 . New light on the Yentl syndrome . European Heart Journal, 21 , : 874 – 875 .
   Google Scholar
• Ozbek , S. , Sert , M. , Paydas , S. and Soy , M. 2003 . Delay in the diagnosis of SLE: The importance of arthritis/arthralgia as the initial symptom . Acta Medica Okayama , 57 ( 4 ) : 187 – 190 .
   Google Scholar
• Pew Research Center . 2005 . “ Internet: The mainstreaming of online life ” . In Trends chap. 4 Retrieved March 6, 2006, from http://pewresearch.org/assets/files/trends2005-internet.pdf
   Google Scholar
• Reid , W. , Whooley , D. , Crayford , T. and Hotopf , M. 2001 . Medically unexplained symptoms—GPs’ attitudes towards their cause and management . Family Practice , 18 ( 5 ) : 519 – 523 .
   PubMed Web of Science ®Google Scholar
• Roeters van Lennep , J. E. , Zwinderman , A. H. , Roeters van Lennep , H. W. , Westerveld , H. E. , Plokker , H. W. Voors , A. A. 2000 . Gender differences in diagnosis and treatment of coronary artery disease from 1981–1997: No evidence for the Yentl syndrome . European Heart Journal , 21 : 911 – 918 .
   Google Scholar
• Rus , V. and Hochberg , M. C. 2002 . “ The epidemiology of systemic lupus erythematosus ” . In Dubois’ lupus erythematosus , 6th , Edited by: Wallace , D. J. and Hahn , B. H. 65 – 83 . Philadelphia : Lippincott Williams & Wilkins .
   Google Scholar
• Shoemaker , A. L. 1996 . What's normal?—Temperature, gender, and heart rate . Journal of statistics education , 4 ( 2 ) Retrieved June 12, 2006, from http://www.amstat.org/publications/jse/v4n2/datasets.shoemaker.html
   Google Scholar
• Suter , L. G. , Fraenkel , L. and Holmboe , E. S. 2006 . What factors account for referral delays for patients with suspected rheumatoid arthritis? . Arthritis and Rheumatism , 55 : 300 – 305 .
   PubMed Web of Science ®Google Scholar
• Taylor , B. A. , Casas-Genem , J. , Vaccaro , A. R. , Hilibrand , A. S. , Hanscom , B. S. and Albert , T. J. 2005 . Different in the work-up and treatment of conditions associated with low back pain by patient gender and ethnic background . Spine , 30 : 359 – 364 .
   PubMed Web of Science ®Google Scholar
• Turner , V. 1967 . The forest of symbols , Ithaca, NY : Cornell University Press .
   Google Scholar
• Turner , V. 1997 . The ritual process. Structure and anti-structure , New York : Aldine de Gruyter. (Original work published in 1969) .
   Google Scholar
• Undeland , M. and Malterud , K. 2002 . Diagnostic work in general practice: More than naming a disease . Scandinavian Journal of Primary Health Care , 20 : 145 – 150 .
   PubMed Web of Science ®Google Scholar
• van Gennep , A . 1960 . The rites of passage , Chicago : University of Chicago Press. (Original work published 1909) .
   Google Scholar
• Wallace , D. J. 2002 . “ The clinical presentation of systemic lupus erythematosus ” . In Dubois’ lupus erythematosus , 6th , Edited by: Wallace , D. J. and Hahn , B. H. 621 – 628 . Philadelphia : Lippincott Williams & Wilkins .
   Google Scholar
• Werner , A. , Isaksen , L. W. and Malterud , K. 2004 . “I am not the kind of woman who complains of everything”: Illness stories on self and shame in women with chronic pain . Social Science and Medicine , 59 : 1035 – 1045 .
   PubMed Web of Science ®Google Scholar
• Wileman , L. , May , C. and Chew-Graham , C. A. 2002 . Medically unexplained symptoms and the problem of power in the primary care consultation: A qualitative study . Family Practice , 19 : 178 – 182 .
   PubMed Web of Science ®Google Scholar
• Woivalin , T. , Krantz , G. , Mäntyranta , T. and Ringsberg , K. C. 2004 . Medically unexplained symptoms: Perceptions of physicians in primary health care . Family Practice , 21 ( 2 ) : 199 – 203 .
   PubMed Web of Science ®Google Scholar
• Wyke , S. , Hunt , K. and Ford , G. 1998 . Gender difference in consulting a general practitioner for common symptoms of minor illness . Social Science and Medicine , 7 : 901 – 906 .
   Google Scholar