Do Endometriosis Patients Suffer an ‘Epistemic Injustice’?

Do Endometriosis Patients Suffer an ‘Epistemic Injustice’?

Andrew Reid

One of the reasons for the ongoing Parliamentary Inquiry into endometriosis, to which this series responds, is the persistent lack of knowledge about the condition; amongst the public, policy-makers and even some who have it. Another reason is the concern raised by campaigners that some of those with endometriosis could be suffering a form of injustice. In this piece I set out one way that these two things could relate, using the philosophical idea of epistemic injustices, which are injustices that arise in the production and dissemination of knowledge.

We typically think of social injustices as those that some agent is responsible or liable for, or has a responsibility to address. It is not obvious that people experiencing ill-health suffer an injustice of this kind. After all, if we happen to become ill, it is not anyone’s fault. So, in what circumstances might we suffer an injustice related to health?

First, we might think that healthcare is something people are entitled to. A person does not suffer an injustice by falling ill, but they do suffer an injustice if they are unable to access treatment for it that they are entitled to. As a result, other people might be required to provide assistance and treatment. Doctors, for example, ought not turn patients away on arbitrary grounds; others might have an obligation to support healthcare through taxation or participation in insurance schemes. Two persistent issues around endometriosis is the time taken to diagnosis and difficulties obtaining treatments that are, in a practical sense, available. Where these exist, we can plausibly argue that patients suffer an injustice of this kind.

Second, we might point to what are often referred to as the ‘social determinants of health’. These are the underlying living conditions that impact upon healthcare outcomes. Usually, those who experience more stressful lives or live in worse material conditions are more likely to suffer a range of poor healthcare outcomes, something that is starkly illustrated in the relationship between poverty and life expectancy.  In the case of endometriosis, there is a higher rate of diagnosis amongst white women and women of higher social and economic classes. If this difference is explained (and the issue is still contentious) by a higher rate of correct diagnoses in these groups, and not because richer, white women are more likely to have the illness, then this raises the possibility that class and race impact upon access to treatment in a way that is unjust.

It is worth paying closer attention to whether and how existing systems of knowledge play a role in generating injustices suffered by patients with endometriosis, especially some of the difficulties they face securing treatment. To make this case I use the concept of ‘epistemic injustice’. These, as Miranda Fricker puts it in her influential account, are injustices “done to someone specifically in their capacity as a knower”.

An area in which people make judgments about others’ capacity for knowledge is around expertise. When another person has expertise in an area, we commit an error if we do not take them seriously enough. Those who refuse vaccinations because they take internet conspiracy theorists more seriously than scientists are guilty of a substantive injustice, by acting in a way that inflicts a risk on their children and possibly others. They are also guilty of an epistemic failure in not deferring to the right people on this issue. On the other hand, the existence of experts does not mean we should defer to them in all cases, because to do so is to give up too much of our autonomy.

On medical issues the question of who counts as an expert is often straightforward; we tend to do what our doctors say, and when. In the case of endometriosis, though, it is not. Patients frequently report: waiting years for a diagnosis (Endometriosis UK produced a survey that suggested the median time to diagnosis from first symptoms was 7.5 years, estimates in the US range from 4 to 11 years); struggling to obtain treatment afterwards; and feeling they are not taken seriously by healthcare professionals and others. A practical consequence of this is that endometriosis patients often have to advocate for themselves at various points in their care. It is telling that Endometriosis UK provides a resource to help preparation for consultations. Doing the necessary research and committing to this process of self-advocacy is easier for those with more money, time, relevant connections and social capital, further exacerbating underlying social injustices.

Fricker suggests there are two significant forms of epistemic injustice that many people suffer regularly: testimonial injustice and hermeneutical injustice. These can be used to further delineate some of the issues around endometriosis. Testimonial injustice is the injustice that people suffer when they are not believed or taken seriously in a discussion, and where their capacity for knowledge is implicitly challenged. This occurs because the victim is subject to a “credibility deficit” in discussions, whereby they are widely perceived to be less credible than they are, and is sometimes mirrored in a “credibility excess” afforded to others. A testimonial injustice occurs when someone suffers a credibility deficit as a result of an incorrect prejudice. For example, it would constitute a testimonial injustice if someone regularly took inexperienced male colleagues more seriously (a credibility excess) in workplace discussions than more experienced and qualified women (a credibility deficit).

In the case of endometriosis, diagnosis and mitigation in other contexts – say the workplace – depends in the first instance on descriptions of pain. The BBC research that promoted the current debate about endometriosis suggests that the severity of the symptoms and the impact on day-to-day life of the disease have been widely understated across society. This creates a situation where the testimony of sufferers is frequently downplayed as a result of underlying, and incorrect, assumptions about the nature of the disease. Whilst few endometriosis patients are treated as outright liars, they are often cast as melodramatic, or assumed to be overstating their symptoms. Where these incorrect judgments are rooted in an unfair prejudice, this constitutes a testimonial injustice. For example, the time to diagnosis is typically longer amongst teenagers and younger women. Whilst there are possible medical reasons for this, the scale of the difference may also be a result of teenagers being perceived as over-dramatic, or as misinterpreting the symptoms of other conditions. If this is correct, many mis-diagnosed teenagers have suffered a testimonial injustice. Given how many women report not being taken seriously when presenting symptoms of endometriosis, a review of healthcare policy will look to dis-aggregate when slow diagnosis is the result of legitimate medical decisions, and when it is grounded on incorrect judgments about sufferers’ credibility.

Hermeneutical injustice refers to the language we use. Language systems emerge that reflect partial, usually powerful interests. As a result, when a marginalised group looks to articulate a point to members of the wider society, its members often lack the language, or reference points in common discourse, to do so. Fricker uses the example that the concept of sexual harassment is relatively recent, and still developing. Many people who have experienced sexual harassment in the workplace would lack the critical concept(s) necessary to articulate their experience.

We can see this play out when we discuss endometriosis. If you look through some of the “personal stories” gathered by Endometriosis UK, they describe pain using terms like “crippling”, “excruciating”, “throbbing”, “piercing”. I’ve also suffered pain in my life that I would describe in such terms, but as a man who has never suffered from endometriosis, the sources were different (impact injuries, other illnesses etc.). Whilst the pain I described was bad, and I’m not being obtuse in also using this language, it was different. Despite using common language around pain, I struggle to imagine both the nature of the pain experienced by some with endometriosis, and how it would impact my life were I to experience it on a long-term basis. In trying to render a form of pain intelligible to someone who has not experienced it, sufferers are forced to make linguistic compromises. To shift attitudes around endometriosis, and draw adequate attention to the difficulties it can present, will mean moving away from existing conventions in the discussion of pain. As visibility and awareness of the disease increases, new language may emerge to partially bridge this gap.

In some ways, the epistemic injustice framework should give us hope. The current attention being paid to endometriosis means that it is emerging from a cloud of widespread misunderstanding and understatement. That said, the framework also shows the challenges ahead, as the ability of sufferers to avoid injustice – to receive treatment they are entitled to, and differential treatment they ought to – will depend on shifting understandings. Either way, the task of improving both elite and public understanding of endometriosis cannot be separated from the political project of addressing injustices in the treatment and management of the disease.

 

Andrew Reid is a political theorist at the University of Birmingham whose main research interests lie in normative political theory, especially political liberalism.

Image Credit: Lonpicman

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