Tendayi Bloom, Charlotte Galpin and Annalise Weckesser
The symptoms associated with endometriosis, particularly excessively painful and/or heavy periods, are often dismissed as part of ‘the curse’ of womanhood. This long-term chronic health condition affects approximately 1 in 10 women (an estimate that has historically overlooked adolescent girls and trans, non-binary and intersex individuals with the condition). Despite how prevalent endometriosis is, and how significant its impact on those affected, it receives a fraction of the attention of other similarly common and systemic conditions (e.g. diabetes). Endometriosis has been the subject of surprisingly little medical research and even less social scientific research.
In this special issue of Discover Society, authors from a range of disciplines and backgrounds argue that developing the social science of endometriosis is crucial, both for what it can tell us about how to improve the experiences of those affected, and because of what it can tell us about politics and society more broadly. Authors interrogate the implications of dismissing endometriosis as a ‘woman’s curse’, relegating it to a misty domain of taboo which reinforces outdated notions of gender, sex, and gender expression.
Studying endometriosis from a social science perspective provides a lens for interrogating politics and society. In the Special Issue, we consider two dimensions of this in particular: how sexism and racism affect presumptions about knowledge and testimony (for example, about our bodies), and how those inequalities are produced and reproduced. This Special Issue was conceived in response to the recent launch of a UK Parliamentary Inquiry into Endometriosis. As such, we conclude this Focus piece with considerations for policy in this area, as well as invitations for further discussion.
The Covid-19 pandemic has affected this work. It made it necessary to postpone the Inquiry and the work that was being done to contribute to it. However, the unequal experiences of the pandemic (including race, class, and gender discrepancies in UK death rates, gendered experiences of access to appropriate PPE, and a possible relationship between female hormones and resilience to the disease) have also brought into focus the urgent need to understand the relationship between health, politics and society.
Endometriosis: A Hidden Condition?
Endometriosis is a condition affecting people who menstruate in which cells similar to those lining the womb start to grow elsewhere in the body. Most commonly, they grow on the ovaries and fallopian tubes, but also on organs such as the bowel and bladder. These cells bleed every month like those inside the womb, but cannot leave the body as a period. This internal bleeding causes inflammation, pain, and scar tissue.
It is a chronic and debilitating condition. Common symptoms include chronic abdominal or pelvic pain (especially during menstruation or from penetrative sex), heavy periods, fatigue, bowel and bladder problems, and difficulty conceiving. It is challenging to diagnose, and can only definitely be done so via laparoscopy, a keyhole surgery. According to Endometriosis UK, the leading UK charity providing support and advocacy in this area, it currently takes an average of 7.5 years from onset of symptoms to receive a diagnosis.
There is currently no cure for endometriosis. It can be removed through surgery, but typically grows back. It is usually controlled with hormonal medication such as the contraceptive pill or intrauterine systems, and basic pain relief. Because it cannot be observed by physicians, and does not show up in scans or blood tests, those affected are extremely dependent on being believed about their symptoms to access routes to diagnosis and treatment. The need to be believed is identified as a significant problem by sufferers and organisations advocating for them. Indeed, in 2017 the National Institute for Health and Care Excellence, an agency within the UK’s National Health Service tasked with promoting excellence in health and care in England and Wales, included the guidance that that health professionals should ‘listen to women/patients,’ a provision usually presumed with other similar conditions.
A Social Science of Endometriosis
The social scientific study of endometriosis thus far has largely been driven by sociologists. The work of two scholars are of particular note in setting the agenda. Elaine Denny’s numerous sociological investigations of women’s experiences of endometriosis in the UK feature prominently in her decades-long work on women’s health, chronic conditions and pain and inform her most recent 2017 book, Pain: A Sociological Introduction. Kate Seear looks at experiences of endometriosis as an illness, including the stigma and taboo associated with it. This approach is presented at length in her 2014 book, The Making of a Modern Epidemic. The past decades have seen a small but growing body of work done in this area of endometriosis research, and a gradual widening of the disciplinary location of the work.
Contributions to this special issue demonstrate how social scientific investigations of endometriosis can offer a nuanced understanding of how the condition impacts on people’s lived experiences of the condition as well as on wider intersectional inequalities. For example, as contemporary studies on endometriosis mature, it is now possible to see the results of longitudinal and increasingly global work examining impacts of endometriosis on quality of life. One contribution, for the 20th anniversary of the Endometriosis Health Profile-30, an endometriosis quality of life measurement, is based on a review of how the tool has been taken up in 49 countries. The piece also highlights how the diagnosis and treatment of endometriosis is affected by local discrimination and taboos as well as global power structures.
One domain in which endometriosis has been found to have particularly a particularly significant impact is in the workplace. In her reflexive piece in this special issue, Amy Bonsall traces how endometriosis has affected her in her own career as an artist and academic. Also in this special issue, Victoria Williams presents the results of research in the domain of work and the role of endometriosis in workplace discrimination. There may also be wider sets of economic implications, with impacts on salaries, career progression and so forth. One study finds significant effects of endometriosis on household income, estimated to be almost £6,000 per employed person with endometriosis per year.
Endometriosis and Inequality
Endometriosis both contributes to and is affected by structures of inequality. Intersectional inequalities also complicate our understanding of endometriosis. As Nikita Aashi Chadha demonstrates in this issue, Black and Asian as well as trans patients are generally found to be less satisfied with their treatment in the UK National Health Service than other groups, and that this also applies in the context of endometriosis. Marginalised individuals are more likely to have their symptoms minimized, to be misdiagnosed, or to receive inadequate treatment. She argues that while healthcare charities, organisations and government bodies claim inclusivity, they in fact do little to include marginalised people when designing policy. This is one way in which existing health and social inequalities, racism and transphobia interact to increase inequalities in the treatment and diagnosis of conditions such as endometriosis.
Sexism, racism and transphobia thus impact on understandings of endometriosis and the willingness to believe patients reporting their symptoms. Given diagnosis and treatment is particularly reliant on testimonies of patients rather than externally visible manifestations of the condition, endometriosis provides a vehicle for considering wider questions about the role of knowledge. In this special issue, Andrew Reid, for example, argues that being believed is itself a question of justice and equality, and that disbelief regarding the experiences of those with endometriosis represents ‘epistemic injustice’.
This ‘epistemic injustice’ likely derives from a number of sources, including both traditional presumptions about sex, gender, race, and class, as well as the ways in which these presumptions are reproduced. Nikita Aashi Chadha criticises the way in which the representation of endometriosis in the media reflects a White cis femininity, which excludes people of colour and trans people from our knowledge of the lived experience and impact of endometriosis. Addressing and challenging this imagery, as well as the taboos that surround menstruation [link to Amy] will likely be a crucial element to addressing epistemic injustice.
This demonstrates that any strategy to address endometriosis must look beyond merely seeking new medical interventions. Social science research can help in finding ways to diagnose and to treat this ‘epistemic injustice’ and understand the various ways in which it manifests. This is in turn fundamental both to motivating an increase in investment in the necessary medical research, and to ensuring that these benefits are available to all those who experience the symptoms associated with the condition.
Social Science and Medical Science
The case of endometriosis highlights a strong and necessary relationship between medical and social scientific work. For example, new research is showing how the lack of medical research to improve endometriosis diagnosis and treatment also affects healthcare professionals. Annalise Weckesser’s contribution to this special issue describes why doctors working to identify suspected cases of endometriosis find it a challenging endeavour. Rather than locating the problem with those affected by endometriosis for not being clear enough about their symptoms or with medical professionals for dismissing the testimony of their patients, the research shows how the nature of the condition itself makes it a challenging one to communicate, diagnose and treat.
Yet, when those affected are not taken seriously enough by doctors, they may feel disempowered and so find other ways to seize agency. This may include documenting their symptoms or, seeking out alternative sources of information, for example. Charlotte Galpin explores, in this special issue, how some people may seek agency and empowerment through pseudo-science and alternative medicine in online communities. She shows how, the wellness industry exploits women’s vulnerabilities in healthcare to sell unproven treatments that feed a multi-million-dollar industry. Poor treatment leading to distrust in mainstream medicine may, therefore, affect how individuals differentiate between good and poor-quality information about endometriosis, and could lead people to avoid medical help altogether.
Using Endometriosis to Study Politics and Society
Endometriosis also provides a vehicle for studying politics and society more widely. That is, the experiences of those affected by endometriosis provides a window onto wider political and sociological realities. This is a relatively new area of work, and in this special issue the authors use endometriosis to interrogate themes in Philosophy, Citizenship Studies, Political Communication, and International Relations. In doing this, they hope to draw attention to the enormous potential for analysis that could be derived from examining the implications of endometriosis more widely, and invite the input of other disciplines. In particular, and in very different ways, the focus in this special issue is on questions raised by endometriosis relating to believability of subjects and the privileging of certain experiences over others, as well as wider implications of these.
Endometriosis raises questions for the role of believability in thinking about justice, contributing for example to the discourse around ‘epistemic injustice’ developed by Andrew Reid in this Special Issue. Traditionally, justice thinking has made presumptions about who falls within its scope. Examining the prejudice behind experiences of endometriosis can help to challenge this. Tendayi Bloom, for example, suggests that through studying the experiences of those affected by endometriosis, it is possible to gain insights into other situations where individuals’ testimony is dismissed. This includes, for example, discrimination and dismissal of testimony in cases relating to migration control and citizenship. It is possible to identify potential for solidarity among a wider range of individuals who experience suffering that is trivialised or dismissed, albeit in different contexts.
This dismissal of individuals’ testimony about their own health by experts may also have unexpected implications for contemporary challenges in political communication, such as the phenomenon of so-called ‘post-truth’. The Council of Europe’s report on the ‘Information Disorder’ calls for the examination of three ‘elements’ of the information disorder – the agent, message, and interpreter. Social scientists responding to post-truth often focus on the agent and message, while neglecting the interpreter – that is, the consumer of the messaging. In the Covid-19 pandemic, the danger but also the proliferation of medical disinformation that circulates online has been highlighted. In this case, disinformation reached the highest levels of government, when US President Donald Trump suggested injecting people with disinfectant and using light treatment to cure Covid-19.
In this special issue, Charlotte Galpin explores how, in their search for agency and validation, people with endometriosis may be vulnerable to alternative online communities rife with medical disinformation. By turning our focus to the reception and interpretation of disinformation and acknowledging the potential role played by people’s experiences of being disbelieved and dismissed, social scientists might get a better understanding of how people lose trust in expertise and become receptive to poor quality information or even populist rhetoric.
Studying experiences of endometriosis also forces a reappraisal of how we understand the body politic itself. In this special issue, Sameera Khalfey links the (under-)treatment and (under-)diagnosis of endometriosis to a politics of the body in which the male body is universalized as the sovereign citizen. Because endometriosis does not affect the ‘universal man’, it is overlooked and marginalized as a health issue. She argues that of the limited medical endometriosis research there is, much of it focuses on (in)fertility, demonstrating a heteronormative and racialized reproduction of societal norms of the woman-as-mother. Until quality of life is prioritised over biopolitics focused on procreation and sustaining the nation, Khalfey argues, women’s bodies will remain marginalized.
An Evolving Politics of Endometriosis
For those affected by endometriosis, it is often a revelation that their experience is not unique, but shared by many others. Some experience relief and validation that their symptoms are shared and therefore ‘more real.’ Some experience frustration and anger when learning just how systemic the condition, and its dismissal, is. As awareness of endometriosis grows and discussions of menstruation become less taboo, it is becoming increasingly impossible to ignore the realities of endometriosis and the many millions who suffer as a result of dysfunctional systems which minimise their experiences. The #MeToo movement highlighted that experiences of inappropriate and unwanted sexual advances are endemic globally (see here for a history of the #MeToo movement). Another hashtag movement, #endowarrior, is increasingly highlighting experiences of endometriosis. This is assisted by high profile persons in politics, music, literature, television, and film ‘coming out’ as having endometriosis (e.g. Emma Bunton, Kate Ford, Whoopi Goldberg, Halsey, Oona King, Padma Lakshmi, Cyndi Lauper, Hilary Mantel, Tia Mowry, Susan Sarandon, and many others) and mainstream news outlets covering them.
This Special Issue is not intended as a culmination. Instead, it is an invitation to other social scientists, activists, and affected persons, to join the conversation. This work is crucial, both for improving the experiences of those affected and because of what it tells us about politics and society more generally. In the UK in 2019, a Parliamentary Inquiry was launched in to endometriosis. Information about this is shared by Endometriosis UK, which serves as the Inquiry’s Secretariat, and Sir David Amess MP, who leads the Inquiry. There is also a growing global community of activists, doctors, and allies, driving a now annual ‘endo march’ in the last weekend in March, which is growing in size each year and now has chapters in over sixty countries worldwide.
This special issue is part of a larger project to gather social scientists, activists and affected persons to interrogate this ‘woman’s curse’. It would have been launched through an in-person symposium in Birmingham, UK, this past March 2020. Due to the Covid-19 lockdown it is instead currently being developed in a variety of ways both on- and offline. Readers are invited to join the mailing list for updates and to get involved. If you are a social scientist, you can consider the relevance of conditions like endometriosis to your own work. Perhaps your own discipline can broaden our understandings of endometriosis. Alternatively, perhaps considering experiences of endometriosis can raise new questions and promote new ways of thinking in your field. It is time to dismiss the idea of endometriosis as a ‘woman’s curse’. Not least, as is clear from this special issue, it is not necessary to identify as a woman to have the condition, and it is not necessary to have the condition to be interested in its political and social implications.
The Covid-19 pandemic has forced everyone to re-evaluate the privilege of good health, and the way in which good health affects everything in society. It also shows very clearly how poor health is determined by a range social and political inequalities. Through the social scientific study of diseases like endometriosis, we can understand better the way in which they both produce and reproduce inequalities. Endometriosis also provide a springboard for learning more widely about politics and society. By taking an issue deeply reflective of structural oppression of marginalized bodies and the cis- and heteronormative ideals that shape the body politic, we can start to dismantle them, piece by piece.
Tendayi Bloom is a Political and Legal Theorist at the University of Birmingham who is interested in questions of noncitizenship, statelessness, and migration governance. She is author of Noncitizenism: Recognising Noncitizen Capabilities in a World of Citizens (2018) and co-editor, most recently, of Understanding Statelessness (2017). Charlotte Galpin is Lecturer in German and European Politics at the University of Birmingham. Her research is concerned with European identities, EU citizenship, Euroscepticism and the European public sphere. She is particularly interested in the relationship between the media and EU legitimacy. Annalise Weckesser is a medical anthropologist undertaking research on gender and sexual and reproductive health at Birmingham City University. She co-leads ‘The VQ,’ a women’s (sexual) health project, and Centre for Social Care and Health Related Research’s Family, Gender and Health Research Cluster.
Image credit: ‘Alice’s belly’