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.