Endometriosis provides a natural experiment for examining the politics of suffering for two main reasons. First, the condition is mostly invisible. It can become visible only if the sufferer is believed, though many report being disbelieved for years. Second, it can affect anyone born with the organs involved in menstruation, including people who otherwise inhabit politically privileged positions, and those privileged individuals also report being dismissed with respect to endometriosis.
Elsewhere, I have advocated adopting a ‘noncitizenist’ approach to thinking about political systems. This starts, not with the privilege of citizenship, but with noncitizenship. It considers dimensions in which, insofar as someone experiences a noncitizen relationship with a State, they must live out their life despite that State. Noncitizenship, I suggest, should not be understood as citizenship’s opposite. Instead, these are two ways in which a person can relate to a State. One person can experience both at the same time. In the case of endometriosis, we can see how someone who mostly relates to their polity as a citizen, may experience noncitizenship in terms of how suffering is recognised and weighted in a particular dimension.
Hysteria and Disbelief
Some scholars who have undertaken historic analyses of the presumed mental disorder of hysteria suggest that this could often be traced to chronic physical conditions like endometriosis. One US study from the 1980s found 75% of respondents with endometriosis reported being dismissed as neurotic (see also). In the UK today, it takes an average of 7.5 years from reporting symptoms to a diagnosis of endometriosis (an improvement from 11 years a decade and a half ago). Those affected commonly report being disbelieved and dismissed. Lynn Enright notes, on the topic of seeking diagnosis for endometriosis:
’…it feels like a woman must meticulously build her case; she must make herself believable, convincing. She must describe her pain, but not seem hysterical. She must record her symptoms, but not seem paranoid’ (at pp.131-132).
Usually, physicians must initially rely entirely on the testimony of sufferers, without physical manifestation of the condition. It is only if endometriosis is suspected that a specific procedure, known as a laparoscopy, may be performed, potentially revealing the cause of suffering and providing a route to treatment. Prejudice, then, has self-reinforcing implications for policy and practice (for interesting reflections, see Ticktin).
This is part of a larger phenomenon. Research indicates that women’s testimonies of physical suffering may be presumed to derive from mental, rather than physical ailments. A report in the Independent newspaper surveys a number of studies with similar findings. For example, in response to complaint of pain, women in the US are more likely to be prescribed sedatives, whereas men are given pain medication. Failure to take female testimony about pelvic pain seriously and so under-diagnosing the conditions that produce it, can make those conditions appear less prevalent than they are. It has also contributed to a failure to conduct research into them. Caroline Criado Perez observes:
‘…although [endometriosis] is thought to affect one in ten women (176 million worldwide) it took until 2017 for England’s National Institute for Health and Care Excellence (NICE) to release its first ever guidance to doctors for dealing with it’ (see Invisible Women, at p.224).
Indeed, the World Health Organisation online repository offers no guidelines on it, beyond a briefing note from 2014. For a life-altering condition that is thought to affect about as many people as diabetes in all parts of the globe, this lack of engagement is striking.
This should also be seen within an even wider context of belief and disbelief of female testimony, and trivialising of female suffering. In the UK, until the late 19th Century, women did not have full legal personhood and violence against women was legal (see also). In 1895 in London it became illegal to hit one’s wife between 10pm and 7am because the noise caused a nuisance; it was not until 1994 that marital rape became a crime in the UK. Today, evidence suggests cultures of disbelief relating to allegations of sexual misconduct and violence. This also intersects with other dimensions of prejudice, leading for example to higher maternal mortality rates among ethnic minority women in the UK, intersections which are also found in experiences of endometriosis.
The case of endometriosis shows trivialisation of suffering involving two main elements: disbelief, and differentiated moral or political weight. The relationship between these can be seen through a comment made by a character from Charles Dickens’ David Copperfield. Upon being told that ‘the poor’ feel things differently to her, Miss Rosa Dartle reflects:
‘It’s so consoling! It’s such a delight to know that, when they suffer, they don’t feel! Sometimes I have been quite uneasy for that sort of people; but now I shall just dismiss the idea of them, altogether.’
That is, first, she learns to disbelieve their feelings of suffering. Second, and on that basis, she can give their suffering less moral weight. In the case of endometriosis, gendered prejudice drives disbelief in female testimony of their suffering. This in turn drives policies rooted in that prejudice.
Endometriosis can affect anyone born with the organs involved in menstruation, no matter what is their relationship with the State. As such, among those affected by endometriosis are individuals who otherwise inhabit privileged positions. Such individuals may generally be included in political decision-making. However, through their experience of endometriosis they must navigate a system of policies which act upon them without including them in decisions about what constitutes suffering, nor what sorts of suffering are politically salient.
Noncitizenist Implications of Endometriosis
The case of endometriosis can contribute to our understanding of what is happening in other contexts in which people experience noncitizenship. This includes contexts in which noncitizenship may be the overriding relationship that a person has with the State with most power over their life. In the UK, it is common for people, once classified as ‘migrants’, to be disbelieved and their suffering to be trivialised. This presumption has led citizens to be deported (e.g. in the ‘Windrush Scandal’), valid asylum applications to be denied (see also), inhumane treatment within the UK to be ignored (see also), and denial of essential medical treatment (see also). On first glance, this disbelief and trivialisation of individuals’ suffering in the case of migration governance can seem merely administrative. That is, it looks like it derives not from prejudice, but from objective facts of legal status or lack of it.
In reality, a person may be defined as a ‘migrant’, or find their citizenship removed as part of a wider system of discrimination, formalising the prejudice that underlies it. Migration and citizenship categories, and the way in which individuals experience them, are grounded in prejudice and consequent discrimination. The Global Passport Index shows that holders of some passports and not others are welcomed in many countries without visas. During the UK’s Windrush crisis it became apparent that some British citizens had a higher burden of proof for access to citizenship rights than others. In Australia, US citizens comprise the majority of ‘unlawful non-citizens’ in the country but are not subject to the same brutal migration control measures as others.
The case of endometriosis helps us to interrogate the mechanisms that drive distrust in a person’s testimony about their suffering in particular, and to examine the implications of this for policy. Without a regular status, it becomes necessary for a person to demonstrate both that they suffer, and that this suffering is morally and politically relevant. This can affect every dimension of an individual’s relationship with a State. When considered alongside the case of endometriosis, it is easier to isolate this denial of suffering from other aspects of the noncitizen experiences of those labelled as irregular migrants. In this way, considering the case of endometriosis can help in interrogating migration policies which seem to allow suffering or loss of life which would be considered to be abhorrent and politically unacceptable in other contexts. This is because it is not enough to bundle the difference in the treatment of suffering with other differential aspects of a person’s experience of the State.
Noncitizenship is not the opposite or the absence of citizenship. Instead, individuals may experience both forms of relationship with a State. I suggest that in the case of conditions like endometriosis, we can see how prejudice can put a person into a noncitizen relationship in one specific dimension, even if in other dimensions they function as a citizen. In this dimension, the person is merely acted upon by the State, and must live out their life despite the State. This may require particular forms of resilience and creativity in order to flourish. It may involve using aspects of citizen privilege where it is available, and may intersect with other dimensions of noncitizenship where these pertain.
As a result, studying experiences of endometriosis can also contribute towards understanding how noncitizenship functions in contexts where an individual’s experience of noncitizenship is more pervasive. It supports a move towards a noncitizenist approach to thinking about political systems. Noncitizenism starts from this relationship of noncitizenship, and so also promotes the development of noncitizen solidarities among those experiencing noncitizenship, albeit in very different ways.
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). Twitter handle: @TendayiB
Acknowledgements: The author thanks Christopher Adams, Charlotte Galpin, Andrew Reid, Nicola Smith, and Annalise Weckesser for their insightful comments on earlier drafts, and Alice Temporin for supplying the stethoscope used in the image.