Chronic illness: misunderstood, misdiagnosed, and mistreated among women

Chronic Illness is so prevalent that we devote this thematic triple issue of Health Care for Women International to disseminate our authors’ work about women diagnosed with these conditions. Although none of the manuscripts are primarily about chronic mental illnesses, collectively I see a pattern emerging such that stress appears to be in the background contributing to all of them. In several of the qualitative studies women report that they don’t seek help because they have other priorities than those recommended by health practitioners. Alas, as women understand their situations, day to day role expectations placed upon them by the men and children who depend on them, seem to prevent these women from seeking help for themselves. Some are too distracted by their routines to delve into the social structural or environmental antecedents of what ails them. While others do seek help, they report ambivalence about such decisions, and that some practitioners ignore or misinterpret the symptoms for which they want help.

This literature differs from what I was studying forty years ago when scholars were suggesting that chronic illnesses were associated with middle-age and aging and that older adults assumed they just had to learn to live with them. This attitude of living with illness is in our articles, but many of the conditions presented here affect women in their childbearing years or earlier and women assume they will cope with pain their entire adult lives. We include work about Chronic Fatigue Syndrome, Lipedema, Polycystic ovarian syndrome, Fibromyalgia, Post-Partum Depression, Endometriosis, Mastalgia, Vestibulodynia, Female Genital Circumcision, Urinary incontinence, eating disorders, Pelvic girdle pain, Hyperuricemia, Acute coronary syndrome, Type I Diabetes, HIV, and Periodontitis.

Of these only the last six affect as many men as women, but the development and treatment of these conditions are all gender dependent. We learn that allocation of research funds for chronic conditions are related to structural patterns of power, and that conditions that are primarily affecting women are misunderstood, misdiagnosed, and mistreated.

As always, read and learn. Examine Table 1 I’ve created to highlight theoretical, methodological and practice contributions to global women’s health literature.

Table 1. Table of literature contributions.

Health Issue	Authors	International literature contribution	Extent of global contribution	Research location
Chronic Fatigue Syndrome	Xaavier Gimeno Torrent	Theoretical contribution: Identified 13 mechanisms of symbolic violence perpetuated by denying recognition to people experiencing chronic fatigue syndrome. Methodological contribution: Correspondence Analysis (content analyses, both qualitative and quantitative, of letters to editors of newspapers)	The theory generated, may be applicable globally for women suffering from conditions unrecognized by powerful majorities anywhere. Global scholars may examine this article to learn how to generate theory from content analyses.	Spain
Chronic Fatigue Syndrome	Karen Groven and Tone Dahl-Michelsen	Theoretical contribution: Case study presented to reexamine existing theories; authors suggest chronic fatigue syndrome be viewed as intra-active process.	Case study of a woman in Norway, but theory has global relevance	Norway
Lipedema	Catharina Melander, et al.	Theoretical contribution: Limited research, Misdiagnosis, Body-Shaming, characterize experience of women with Lipedema	Data limited to women in Sweden, but most likely the theory generated by Torrent’s study of CFS would apply to this disease as well.	Sweden
Polycystic Ovarian Syndrome	Morvarid Noormohammadi, et al.	Theoretical contribution: Increasing vegetable proteins and lowering animal proteins may lower the risk for PCOS. Practice contribution: Reducing animal proteins lessens symptoms associated with PCOS.	Study limited to patients in Iran, yet study may be replicated globally.	Tehran, Iran
Polycystic Ovarian Syndrome	Jung-Hee Kim, et al.	Theoretical contribution: Asian women have similar clinical symptoms of PCOS, but norms used to determine who is at risk differ by race.	Data from Korea reveal health professionals should consider racial differences when managing women with PCOS	Korea
Polycystic Ovarian Syndrome	Seemab Ashraf, et al.	Theoretical Contribution: Diet (Chicken, fast food, and spicy food). Sedentary lifestyle, but not Social economic status are significant predictors of PCOS severity.	Results relate to Lahore, Pakistan and cannot be generalized to a global population.	Pakistan
Fibromyalgia	Sinem Salar, et al.	Practice contribution: Client-centered and occupation-based lifestyle intervention applied to individuals with fibromyalgia seems effective re increasing occupational participation and reducing psychological symptoms.	Data from women in Turkey, only. Using COPM is a cross-culturally appropriate; method can be culturally adapted and replicated elsewhere.	Turkey
Post-Partum Depression	Amelia Rizzo, et al.	Theoretical contribution: Post-partum depression may be predicted by symptoms in early pregnancy.	Results limited to participants in this Italian study but hypotheses should be tested elsewhere; potential to make a practice contribution with replication.	Italy
Endometriosis	Cristina Zarbo et al.	Theoretical contribution: Authors confirm literature published theory that pain and worrying about pain predict quality of life in women with endometriosis. Methodological contribution: Case-control longitudinal study assessing psychological and cognitive conditions in women with endometriosis	Authors related their theoretical findings to those of others in global literature to clarify their global contribution.	Italy
Mastalgia	Haci Bolat, et al.	Theoretical contribution: BMI, coffee and chocolate consumption, stress, and breast surgery history predict breast pain	Based on interviews with post-surgical patients in Turkey. Global contribution hypothetical until study is replicated elsewhere.	Turkey
Vestibulodynia	Martha Schneider, et al.	Theoretical contribution: Women endure painful intercourse and not tell their partner, fearing rejection and conflict.	Findings limited to women in Norway. Replicating study elsewhere is desirable.	Norway
Female Genital Circumcision	Shahla Shafaati Laleh, et al.	Theoretical contribution: Female genital circumcision associated with reduction of lubrication and sexual satisfaction and increasing dyspareunia, but no difference in arousal or reaching orgasm compared to the uncircumcised women.	Findings are limited to women in Kurdish region of Iran.	Iran
Urinary incontinence and obesity	Zehra Can and Sevil Sahin	Theoretical contribution: Urinary incontinence is associated with obesity and lower quality of life.	Data from Turkey provide confirmation of prior theory in global literature. Future publications must generate new theory or provide a practice contribution.	Turkey
Eating Disorder	Roni Elran-Barak, et al.	Theoretical contribution: Women with eating disorders prefer clear goals set by dieticians but are ambivalent about treatment process.	Data limited to relationship between patients and dietitians in Israel	Israel
Eating Disorder	Nicole Molding and Michelle Caruso	Theoretical contribution: Gendered expectations of women in Italian-Australian culture intersect with food meanings, cultural ideals, and practices to produce distinct experiences of disordered eating and restricted access to formal support.	Findings generated from Italian-Australian women. Authors present evidence to argue that findings are likely to be applicable to other migrant communities across the world.	Australia
Pelvic girdle pain	Ingrid Knutsen, Anita Hansen, Veslemøy Egede-Nissen	Theoretical contribution: Pain is associated with planning at home, work, and treatment schedules.	Informants were women in Norway but the theory may be applicable everywhere.	Norway
Hyperuricemia	Min-Hee Kim and Mi Ryeong Song	Theoretical contribution: Reproductive life-stage predicts Hyperuricemia. (Hyperuricemia associated with abdominal obesity during reproductive years but after menopause there is no metabolic risk for Hyperuricemia).	Data based on Korean sample, but study can be replicated for global theory development elsewehere.	Korea
Acute Coronary Syndrome	Marwa Al Barmawi, et al.	Theoretical contribution: Delays in seeking treatment are associated with how women prioritize role expectations and their knowledge deficit.	Results limited to women in Jordan, but hypothesis about role expectations may be tested elsewhere.	Jordan
Type I Diabetes and Breastfeeding	Ioannis Kakoulidis, et al.	Theoretical contribution: Authors generated hypothesis that hypoglycemic events are related to a change in diet, differences in caloric needs, changes in daily schedule and rearrangements of the insulin regimens in the postpartum period.	Authors acknowledge that results cannot be generalized to a global population.	Greece
HIV Stigma	Lisa-Maree Herron, et al.	Theoretical contribution: Researchers provided analyses to confirm stigma and treatments for HIV are related to sociostructural barriers to support and negative attitudes of practitioners.	Researchers in Australia reviewed qualitative studies of women living with HIV in Australia, Canada, New Zealand, the UK and the USA. New theory was not generated.	Australia
HIV	Rita Ismail, et al.	Theoretical contribution: Authors rediscovered dimensions of stigma among patients and practitioners.	Data from Indonesia provides supportive evidence for dimensions of stigma that existed prior in global literature.	Indonesia
Periodontitis	Amir Reza Ahmadinia, et al.	Theoretical contribution: There is an association between periodontal indices and serum liver enzymes level	Results generalizable only to this study in Iran. Authors note difficulty of comparing results to other studies as definitions of periodontitis have been inconsistent.	Iran

Moreover, learn to relax. Dig deep within. Breathe, Meditate, and Pray that life in 2022 will be better for women everywhere. Happy New Year!

Eleanor Krassen Covan, PhD
Editor-in-Chief
January 8, 2022
[email protected]