Combatting Epistemic Injustice through Self-diagnosis

Endometriosis is a chronic disease characterised by the growth of endometrial tissue outside of the uterine cavity (Parasar, 2017). Symptoms include infertility, cyclical and non-cyclical chronic pelvic pain, dysmenorrhoea (painful lower abdominal cramping during menstruation that effects quality of life), dyspareunia (pain during sexual intercourse), dyschezia (pain on defecation) and dysuria (pain on urinating) (Horne, 2022).

Endometriosis

The path to diagnosis can be long with an average wait time of 8 years and 10 months in the UK. According to Endometriosis UK, throughout this journey, many people feel dismissed by doctors and struggle to feel heard. 

As a response to the struggle to receive diagnosis, many have identified this condition themselves through research, resulting in self-diagnosis (Hallstrom, 2024).

Epistemic injustice and self-esteem

The gold standard test for diagnosing endometriosis is laparoscopic surgery (Allaire, 2023). According to NICE, more accessible tests, such as examinations and ultrasound scans, cannot be used to exclude it.  Therefore, referral for surgery strongly relies on testimony. This testimony is vulnerable to epistemic injustice. 

Fricker describes epistemic injustice as the idea that people can be discriminated against in their capacity as a knower based on prejudices about them. Testimonial injustice is where prejudices impact the credibility given to a knower’s testimony. Hermeneutical injustice is structural discrimination due to gaps in resources attributed to underrepresentation of marginalised individuals (Byskov, 2021). 

By denying credibility to these testimonies, we devalue contributions of experience and are dismissive of patients’ attempts to understand themselves. This undermines epistemic self-esteem by creating situations where people question their judgement of their experiences (Hallstrom, 2024).

I argue that self-diagnosis can combat epistemic injustice by improving communication in consultations.  This may not result in confirmation of the self-diagnosis but can combat the undermining of epistemic self-esteem.  

Communication

Effective bidirectional communication is vital in healthcare. However, the use of different language and concepts to express their situation between the patient and the clinician can cause misunderstandings. This can constitute testimonial injustice as their pain may fulfil the referral criteria but be denied due to their language not reflecting or mimicking the official NICE guidance surrounding the pathological pain of endometriosis. This undermines epistemic self-esteem by devaluing the patient’s contribution.   

The processes involved in self-diagnosis can combat this through creating access to communication aids. These aids, such as The Endometriosis Toolkit, can bridge the gap in communication by targeting language, providing a guide for noting observations and exploring other symptoms (check out the Menstrual health project). This can combat testimonial injustice by promoting a shared language and promoting effective communication. Therefore, epistemic self-esteem is maintained by having contributions valued. 

However, barriers to finding communicative aids online include variations in digital literacy. By encouraging individuals to improve their knowledge, whilst not supporting those unable to access resources, we risk worsening epistemic disparities. However, these aids are now available to those on social media and through schools, as in 2021 the UK Department for Education has mandated menstrual education which includes advice on when to seek help.

As many patients are young when symptoms first appear, discussions with those in their social groups are vital (Hallstrom, 2024). They can compare their symptoms to their peers and medical framework. Understanding the framework in doctors’ appointments can help them communicate their issue in accordance with guidelines, allowing them to access resources. This knowledge can diminish testimonial injustice through promoting a shared language and promote epistemic self-esteem by valuing their testimony.

Endometriosis

Dismissal of self-diagnosis

Affirmation of one’s self-diagnosis is not the aim of the appointment, but rather is a starting point for discussion. It can help understand and communicate the patient’s perspective. This questioning of symptoms and self-diagnosis can feel undermining, but effective communication in consultations can validate experiences even if the conclusion is not the acceptance of one’s self-diagnosis. When experiences are validated, damage to epistemic self-esteem can be negated.

This post is by Emily Bywater, a recent graduate from the University of Birmingham who completed an elective project with Kathleen Murphy-Hollies on tackling epistemic injustice in healthcare, with a focus on endometriosis. She provides us with a summary of her essay, which explores the philosophical and ethics issues which relate to practicing as a doctor. 

Endometriosis in Later Life: A Hidden Healthcare Inequality

In honour of International Women's Day, Elisabeth Langmann highlights the importance of talking about women's healthcare through an intersectional lens in discussing her recent open-access paper, co-authored with Anna-Christina Kainradl, Merle Weßel, and Alekszandra Rokvity, "Endometriosis in Later Life: An Intersectional Analysis from the Perspective of Epistemic Injustice":

Endometriosis has long been framed as a disease of reproductive age – something that affects menstruating individuals and supposedly disappears with menopause. But what happens when these assumptions mean that suffering goes unnoticed, and necessary care is withheld? What happens when postmenopausal individuals continue to experience symptoms, yet the medical system fails to recognize or address their suffering?

In our recent paper, Endometriosis in Later Life: An Intersectional Analysis from the Perspective of Epistemic Injustice, we critically examine how sexism, ageism and epistemic injustice shape the experiences of postmenopausal individuals with endometriosis. 

We argue that the invisibility of endometriosis in later life is not just a gap in medical knowledge – it is a systemic injustice with real, harmful consequences.

Endometriosis is a chronic inflammatory condition affecting an estimated 10% of biological women. Despite its prevalence, it remains largely misunderstood. 

One of the most persistent myths is that endometriosis vanishes after menopause due to the decline in estrogen levels. This belief is deeply ingrained in both medical literature and public discourse. However, research shows that a significant number of individuals continue to experience symptoms well into perimenopause and beyond.

Yet major menopause guidelines, including those from the European Menopause and Andropause Society and the North American Menopause Society, fail to mention endometriosis – leaving postmenopausal individuals without recognition, research, or care. 

This silence has consequences: when healthcare professionals do not recognize endometriosis in postmenopausal individuals, symptoms are dismissed, misattributed to other conditions, or outright ignored.

Our research highlights how gender and age intersect to shape the marginalisation of older women with endometriosis. While gender bias in endometriosis diagnosis has been well-documented, where individuals are told that their pain is “normal” or “all in their head”, less attention has been given to how ageism compounds this issue, making older women more vulnerable to dismissal and misdiagnosis.

This erasure is reinforced by the perception that older women are unreliable sources of knowledge about their own bodies. Their reports of pain are dismissed not only because of long-standing biases about female pain, but also because of assumptions that postmenopausal individuals are no longer affected by reproductive health conditions. This results in testimonial injustice – where individuals are denied credibility due to prejudiced assumptions about their age and gender.

At the same time, the medical system lacks the necessary interpretive frameworks to recognize endometriosis in later life. When postmenopausal women seek medical care for pelvic pain or other symptoms, their experiences are often filtered through ageist and sexist biases. 

Instead of investigating endometriosis as a possible cause, healthcare providers may attribute symptoms to “normal ageing” or conditions unrelated to endometriosis. This is an example of hermeneutic injustice, where a lack of shared knowledge prevents individuals from making sense of and communicating their experiences.

Why This Matters: A Call for Change

The exclusion of postmenopausal individuals from endometriosis research, clinical guidelines, and public health discussions is more than an oversight, it is a structural injustice. As long as endometriosis remains framed as a disease of reproductive age, those who experience symptoms later in life will continue to be disbelieved, misdiagnosed, and left without adequate care. 

To address this, we argue for a lifespan approach to endometriosis, one that recognizes the possible persistence of the disease beyond reproductive age, integrates postmenopausal individuals into research, clinical guidelines, and public health policies, and challenges ageist and sexist biases in healthcare that shape medical knowledge and practice. 

Endometriosis does not end with menopause – but the belief that it does continues to shape who receives care and who is left suffering in silence. Thus, if endometriosis can last a lifetime, so should our commitment to recognizing, researching, and addressing it.

 

Elisabeth Langmann is a postdoctoral researcher in bioethics at the Institute of Ethics and History of Health in Society (IEHHS) at the University of Augsburg, Germany. Her research focuses on structural inequalities in health, particularly ageism, ableism, and the systemic exclusion of marginalised groups in healthcare. She is currently part of the DFG-funded project "Centring Marginalisation for Effective and Just Public Health Policy and Practice," examining how public health policies engage with marginalisation, whose experiences remain unrecognized, and what shifts are needed for more inclusive approaches. Rooted in feminist bioethics and social justice, her work explores how power, knowledge, and institutional biases shape health experiences.

Understanding Oneself through Others Day 1

Winterbourne House and Garden

This is a report by Jodie Russell. On 23rd and 24th September Eleanor Byrne and Kathleen Murphy-Hollies organised a workshop at the University of Birmingham, bringing together researchers interested in the area of the intersection of epistemic injustice and distributed cognition. The venue for the workshop was the beautiful Winterbourne House and Garden. 

On day one, postdoctoral researchers on EPIC Kathleen Murphy-Hollies, Eleanor Byrne, and Jodie Russell and EPIC project partner Michael Larkin introduced project EPIC and talked about their research to date. Kathleen is interested in how our self concepts and our relationships with others shape our identities. Eleanor is working on affective injustice, a type of injustice that relates to how a persons’s emotions are given (or denied) uptake by others. Jodie aims to establish an intersectional, feminist approach to psychiatry. Michael is going to work with the EPIC Birmingham team to develop a case study on epistemic injustice in young people with psychosis and his own research is about the importance on relationships for youth mental health.

Some key information about project EPIC

Our first speaker was our keynote Allan Køster from the Danish National Centre for Grief with a talk titled "Consolation: a fundamental existential category". Køster made the case for a new understanding of the phenomena of consolation to better capture how it relates to grief and loss. 

Slide from Køster's presentation

Køster noted, for example, that doctors are often faced with instances where they must inform a terminally ill patient of their prognosis. In such cases, there is little hope the doctor can offer the patient which raises the question of how we are to face such situations when inevitable and where little comfort can be offered. 

This is where we often turn to the practice of consolation, but what consolation is, is not yet clear. 

Køster thus presented an existential account of consolation based on the work of Heidegger. On this account, life is felt to be overwhelmingly burdensome, and this isn’t something we live in spite of, but, instead, it’s a fundamental aspect of our existence. 

Consolation should then be seen as, according to Køster, the attempt to unburden oneself or another from the weight of existence. This can be achieved through a kind of “delegating” or distributing the weight of that burden onto the world and others. For example, when we feel consoled by a walk through nature, part of the burden of existence is offloaded onto our environment. 

Our next presentation was given by Zuzanna Rucińska from the University of Antwerp. Her talk was titled "Understanding suicidality as a situated phenomenon" and focused on the cognitive and affective scaffolding of individuals with suicidal ideation. 

Rucińska began by presenting a puzzle around suicidality; individuals who experience suicidal thoughts are often ambivalent about life. Rucińska noted that in attempting to takes one’s own life, individuals often change their mind in the act. There is, nevertheless, for many individuals, an authentic desire to die that can come and go over a lifetime. Given this ambivalence, the question is raised as to why some people attempt to end their lives. 

Rucińska's presentation

Rucińska then proposed to answer this question through providing an account based on the interplay of the individual and her situation. Rucińska noted, for instance, the significance of the method of suicide; individuals do not change methods when their preferred method isn’t available, and studies on the restriction of particular products which are used in culturally preferred methods of suicide showed a reduction in suicide mortality. 

From this, Rucińska suggested that the environment can afford for suicidal actions; a suicidal person will perceive and attend to the features of her environment that will assist her in taking her life. These are features others might not necessarily notice due to our individual histories which have shaped how spaces are meaningful to us in specific ways. Moreover, the desire to die and to live are not contradictory but reflect the very dynamic relationship all individuals have with the environment where, for the suicidal, the opportunity to take one’s life might appear and recede as they navigate the world. 

Rucińska’s analysis implies further that a different environment will afford for different actions. Therefore, on a situated view, not only do we better understand the phenomenology of suicidality but this also potentially opens up new avenues for suicide prevention. 

After a hearty lunch break, our morning session was followed up by an interesting talk by Zamir Kadodia from the University of Exeter on a joint project with Joel Krueger on "Epistemic Injustice, Niche Construction & Neurodiversity".  

Kadodia introduced the neurodiversity paradigm from which their critique stems. This paradigm characterises neurodiversity as cognitive difference and states that the idea of a “healthy” or “normal” brain or mind is a construction. This is in contrast to the pathology paradigm which has characterised neurodiversity as disorder.  

According to the neurodiversity paradigm, neurodivergent individuals, such as those that are autistic, should be considered as a minority group. This is especially important to consider, Kadodia notes, as neurodivergent voices have been historically excluded from attempts to understand neurodivergence itself.

Kadodia and Krueger’s goal, however, is to highlight more surreptitious forms of marginalisation experienced by neurodivergent individuals. Kadodia discussed here an example from Miranda Fricker; in this case, an individual mistakes a shy person for being insincere because their shy behaviour (e.g. avoiding eye contact) makes the individual appear to be untrustworthy. Fricker counts this as a case of bad luck, not epistemic injustice, but Kadodia argued that this case looks different when we swap in the shy person for an autistic person. 

Slide in Kadodia's presentation

In this new example, Kadodia argued that this is a case of epistemic injustice because the neurodivergent person is being judged by norms of trustworthy behaviour that are determined and enacted by neurotypical individuals. As marginalised individuals, neurodivergent people don’t get to contribute to these epistemic norms, but are nevertheless expected to conform to them. This is worrisome because it means that norms of communication for neurodivergent individuals are given less credibility, which leads to a "neurotype identity prejudice", meaning that neurodivergent needs are neglected or, in the worst cases, stigmatised. 

Kadodia then problematised this further by translating this discussion around neurotypical norms to the framework of niche construction, arguing that stereotypes about neurodivergent people in the social imagination become entrenched in material practices, e.g. habits and interactions with the physical and social environment, just as neurotypical norms also become part of the habitual and embodied ways of being in the world.  

Kadodia thus called for the need for neurodiversification, which entails a greater representation of neurotypes and even a clash between different norms in order to facilitate a constructive conversation over the niches we live in. 

Slide from Latham's presentation

Afterwards, Sally Latham from Birmingham Metropolitan College talked to us about "Why self-help is not always helpful". Latham began with some self-help examples in popular culture we are all too familiar with, for instance, the idea of changing how you think in order to transform your situation. 

Latham made the case that much pop culture self-help emphasise a narrative of personal responsibility and individual choice; it is through our own efforts, these narratives suggest, that we will overcome our circumstances. However, drawing on Frank and Foucault, Latham argued that these narratives perpetuate a "ruse of liberation". This is achieved through technologies of the self, what are techniques used to understand oneself and even transform oneself.  

These technologies themselves can be used to control individuals through self-monitoring. In this way, Latham compared self-help to the panopticon; it becomes a way through which to constantly monitor and measure our 'selves' through the various exercises self-help prescribes. Self-help is given normative force for this purpose from its proximity to psychology and the authority of wellbeing 'experts'.  

The flip side of this, Latham described, is that reactions to negative life events that don't follow the positive, self-actualising framework of self-help become taboo. This is tantamount to epistemic injustice by excluding particular social experiences, which marginalises individuals who cannot face, e.g., illness with positivity. Due to the focus on individual responsibility, this may also lead to the blaming of vulnerable people for their negative outlook on life. Latham proposed, as one solution, that we should change the definition of self-help itself so that it might be more fruitful in future. 

Lastly, presented in a hybrid format, Lucy Osler (Cardiff University) and Louise Richardson-Self (University of Tasmania) closed the first day of the workshop with the talk “It Just Goes to Show That You Actually Need to Listen to Your Patients Sometimes: Distributed Cognition, Epistemic Injustice, and the (Under)diagnosis of Endometriosis".

Slide from Osler and Richardson-Self's presentation

Osler and Richardson started by informing us on some statistics on endometriosis. Shockingly, 1 in 7 people assigned female at birth are diagnosed, and diagnosis can take more than 8 years in the UK. The consequences of a delayed diagnosis involve a range of physical and social harms. Osler and Richardson, however, were focussing on epistemic and affective harms. 

They argued that there are persistent, systematic identity-tracking prejudices within wider western healthcare practices. In particular, women experience disproportionate levels of bias in diagnosis and treatment of health conditions. Richardson noted further that the level of confidence gynaecologist and women’s health GP’s have in their skills in managing patients with chronic pelvic pain is worryingly low. Moreover, gynaecologists report that they are not likely to consider patient beliefs and goals in regards to managing chronic pelvic pain.

Not only can this lead to physical and social harms, patients with endometriosis also suffer epistemic and affective harms as their testimony is overlooked or discredited. These patients are thus left with feelings of self-doubt, abandonment, shame, and mistrust of the medical establishment. This raises the question of what features enable the dynamic between medical practitioner and patient to play out in ways that perpetuate epistemic harms in the case of endometriosis.

Osler framed this issue in terms of niche construction and scaffolding; medical knowledge is often distributed among healthcare professionals, medical tools and textbooks which come together to form the niche of western healthcare. The underdiagnosis of endometriosis in women can be understood, Osler argued, in terms of the failure of this medical niche to epistemically support those with endometriosis. 

Rounding off their talk, Richardson and Osler then introduced the symbol of the “Endo Warrior” as a form of resistance of epistemic injustice through empowerment. The use of social media is critical this process as a safe space and efficient medium for sharing expertise and experience.

This talk closed the first day of the workshop. Next week we will report from the second day of the workshop. Watch this space!

Female Sterilization and Epistemic Injustice

Hysterectomies, involving the removal of fallopian tubes, ovaries, or the cervix, are among some of the most common operations performed in the US and the UK. Often requested as a way of minimizing the pain associated with endometriosis, hysterectomies can also be lifesaving for women with cancer.

Recently, there has been a wave of op-eds and public accusations against medical professionals who refuse to perform these surgeries on young women, who are suffering from painful or even life-threatening conditions. 

These refusals are often justified by the concern that these young women might change their minds about having children, that their future husbands might be cheated out of parenthood or, in the case of non-binary patients, that their sexual identity might change. 

So far, these hysterectomy refusals have been criticized as denials of bodily autonomy and reproductive freedom. Yet, it is difficult to neglect that, in these interactions, some epistemic injustices might also be at play.

Uterus 

For one, the young women might be victims of testimonial injustice, which, according to Miranda Fricker, involves a speaker receiving an unfair deficit of credibility from a hearer owing to prejudice on the hearer's part. In this case, the patients’ assertions that they have understood and accepted all implications of such an operation (especially regarding the ability to procreate), are being dismissed in a way that amounts to an identity-prejudicial credibility deficit. 

Importantly, the medical professionals, deny credibility to patients based on an intersectional prejudice against young women, who are seen as immature, confused, or plainly mistaken about their reproductive decisions. They are not only denied epistemic agency, but othered, as they are viewed solely through the lens of patriarchal norms.

In addition to testimonial injustice, one might argue that young women who are denied hysterectomies also suffer from hermeneutical marginalization, wherein significant parts of lived social experience are obscured from understanding because of prejudices in collective resources for social interpretation. Historically, women, especially younger women, have been denied equal hermeneutical participation, and as a result, their lived experience of postpartum depression, sexual harassment and domestic abuse have long been obscured. 

In the case of hysterectomy denials, experiences of gynecological illness and authentic desires to remain childfree fail to be properly interpreted by the medical establishment, which functions here as a reinforcer of dominant norms linking a woman’s value to her ability to reproduce. Furthermore, these cases also indicate a compounded epistemic injustice, testimonial obfuscation, where an identity-prejudicial credibility evaluation an experience to remain unintelligible to the hermeneutically marginalized speaker. 

Thus, young women suffer a double epistemic harm – their experiences are obscured not only within the dominant discourse but also to themselves, in ways that distorts the construction of their selfhood. This explains why the denial of hysterectomies can make women doubt their own minds and desires and force them into submission to the dominant norms, regardless of the painful or life-threatening conditions they might endure.

It is my hope that considering these injustices will renew calls for embedding epistemic virtues within the medical establishment.

 

Dr Catalina Carpan is a Teaching Fellow in Political Theory at the University of Warwick. Her research explores epistemic injustice in relation to ideology and power, to show how its victims are disciplined and denied republican freedom.

Will medical AI apps help us to achieve healthcare justice?

AI-powered healthcare apps promise to solve current problems, offering more efficient, unbiased and accurate care to users. According to these promises, AI Apps can diagnose mental disorders, tell patients if their moles are cancerous, and offer a more effective ear for disclosure since some patients report feeling more comfortable sharing their experiences with AI rather than with their clinician. Yet, as AI has been found to reproduce biases within training data, can it really be a departure from the long and difficult history of inequality in healthcare? 

Traditionally, women have been underrepresented in science, leading to conditions faced by half the world's population being ignored and women's symptoms being systemically underplayed and disbelieved. This resulted often in the lack of adequate understanding of female physiology. For decades studies on women’s healthcare have revealed how women’s pain is often misdiagnosed, psychologised, with women reporting having to work harder for their symptoms to be believed and addressed. 

Moreover, the history of psychiatry shows how diagnosing mental disorders has been used to oppress women. Today, we are facing great inequalities in the medical profession; for example, only one in ten surgeons in the NHS identify as female while patients with endometriosis need on average seven and a half years to receive diagnosis.

Reproductive health is a popular area for apps, with one subsection targeting users who suffer from symptoms compatible with endometriosis so they can track their pain and physical discomfort. Apps collect data that can then be presented to a physician, and via this process data seem more reliable and trustworthy. This type of app is presented as a solution for epistemic injustice because the data collection and visualisation of data points are seen as more objective and can thus accelerate diagnosis. The collected data can also be argued to power AI investigations into medical conditions, and, at the individual level, empower people by tracking their medical journeys.

The apps collect inputted information and present it to healthcare providers, aiming to alleviate epistemic injustice in the clinic though data visualisation. However, we contend that this ultimately shifts the burden of proof from the practitioner to the user rather than resolve the structural inequalities responsible for the phenomenon. The apps could ultimately increase the burden of proof for these conditions, requiring longitudinal self-tracking and interaction with the app interface, a labour cost to the individual who is seeking help. For those users who, for whatever reason, do not or cannot provide this information, then the barrier to healthcare will be further entrenched. Ultimately such apps could make epistemic injustice worse rather than alleviating it. The risk is that the issue will be obfuscated by techno-solutionism and that, ultimately, women are not to be believed without neatly packaged data.

Moreover, we are sceptical about the emancipatory role of such apps in improving healthcare for individuals who face epistemic injustice in the clinic. We are also concerned about the argument that the data these apps collect can truly empower research into conditions such as endometriosis. What is currently needed to advance understanding of the condition is more and better imaging and screening of those affected, which start with believing their symptoms. This is possible within traditional medical set-ups. So, before we get excited about the next toolkit, it is worth reflecting on why we expect technology to offer us solutions to deeply entrenched socioeconomic problems.

Dr Milena Ivanova is a philosopher of science interested in the relationship between science and art, creativity and the automation of discovery. She teaches medical professionals on the role of epistemic diversity in medicine and is interested in the presence of gender and racial bias in the history of medicine and psychiatry.

Dr Aisha Sobey is an interdisciplinary STS researcher, who is concerned with understanding the interaction of the digital systems and the human experience, especially concerning power structures.