{"id":2968,"date":"2021-05-06T10:00:41","date_gmt":"2021-05-06T09:00:41","guid":{"rendered":"https:\/\/blogs.bmj.com\/medical-humanities\/?p=2968"},"modified":"2021-04-23T10:25:19","modified_gmt":"2021-04-23T09:25:19","slug":"representing-epistemic-injustice","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/medical-humanities\/2021\/05\/06\/representing-epistemic-injustice\/","title":{"rendered":"Representing Epistemic Injustice"},"content":{"rendered":"

Blog by Sarah Marie Graye<\/strong><\/p>\n

It is said that knowledge is power. So what happens when the knowledge of your own body is ignored or dismissed?<\/p>\n

\"Epistemic<\/p>\n

 <\/p>\n

This is how I felt when I was told I had asthma and I knew<\/em> something else was going on.<\/p>\n

Eventually, I ended up in hospital having emergency surgery for a tension pneumothorax (collapsed lung), which turned out to be just the latest of many. The damaged section of lung that was removed was biopsied and the histopathology report gave me a diagnosis of \u201cemphysema with focal collapse and fibrosis\u201d.<\/p>\n

So not asthma.<\/p>\n

The reasoning behind my initial misdiagnosis (and delayed correct diagnosis) was that collapsed lungs are rare in females. This is not the case. While a pneumothorax is more common in men, they are not a common diagnosis in either gender (Gupta et all, 2000: 666).<\/p>\n

When I complained about this to other sick people (because when you\u2019re sick, you get to meet a lot<\/em> of other sick people), I discovered my situation was far from unique. I met many people who\u2019d had their beliefs about their own bodies dismissed by specialists who assumed they knew better.<\/p>\n

This experience has a name: epistemic injustice.<\/p>\n

From a health perspective, epistemic injustice is where \u201cill persons are vulnerable to testimonial injustice through the presumptive attribution of characteristics like cognitive unreliability and emotional instability that downgrade the credibility of their testimonies\u201d (Carel & Kidd, 2014: 529). Much of the research in this area has focused on how those who are not part of the dominant group (i.e. white cis males) experience health stigma and substandard healthcare (Buchman et all, 2017: 37).\u00a0Pozo & Rich (2021: 90) discovered the health testimonies of black patients were not being taken seriously, whereas\u00a0Buchman et all (2017: 37) found that both females and the elderly were amongst the groups reported to consistently receive a lower standard of healthcare.<\/p>\n

Even in the media, there are many examples of epistemic injustice: black tennis star Serena Williams\u2019 brush with death while giving birth; the blanket use of \u201cdo not resuscitate\u201d orders on elderly patients with Covid in England; and heart attacks being missed in women because of the standard symptom list being based on how men experience cardiac arrest.<\/p>\n

Given the problems mentioned above, it becomes clear that epistemic injustice results in a lack of access to healthcare even when people superficially<\/em> have access: they get to see the doctor, but they don\u2019t get the healthcare they need.<\/p>\n

One of the areas where epistemic injustice research has been focused is \u201cpain bias\u201d, which sees only young white cis men being treated specifically for the pain they go to their doctor about, while other groups are treated differently. There are \u201cmajor inequities in the prevalence, treatment, and outcomes for chronic pain across race, ethnicity, gender, and class\u201d (Buchman et all, 2017: 31).<\/p>\n

Although my health issues resulted in surgery, my delayed diagnosis meant that I lived with unexplained sharp chest pains for seven years: pain that would probably have been diagnosed earlier if I were male.<\/p>\n

As part of my healing process, I have written poetry about my experiences of epistemic injustice. And I wish to share with you a poem that attempts to reveal the various ways people experience pain bias.<\/p>\n

Pain Bias<\/strong><\/p>\n

\u201cI\u2019m in pain,\u201d you tell the doctor
\nbut he doesn\u2019t believe
\nYou.<\/p>\n

You\u2019re not a
\nWhite
\nCis
\nMale
\nin your
\nThirties.<\/p>\n

You\u2019re a woman in your
\nEarly twenties
\nand your doctor knows that a
\nFemale
\nof your age is probably
\nEmotional.<\/p>\n

So you\u2019re sent away with anti-depressants.
\n(Not the painkillers you hoped for.)<\/p>\n

\u201cI\u2019m in pain,\u201d you tell the doctor
\nbut he doesn\u2019t believe
\nYou.<\/p>\n

You\u2019re a woman in your
\nMid-forties
\nand your doctor knows that a
\nFemale
\nof your age is probably
\nHormonal.<\/p>\n

So your doctor gives you a leaflet about HRT.
\n(Not the painkillers you hoped for.)<\/p>\n

\u201cI\u2019m in pain,\u201d you tell the doctor
\nbut he doesn\u2019t believe
\nYou.<\/p>\n

You\u2019re a cis male in your thirties
\nbut you\u2019re
\nBlack<\/p>\n

and your doctor knows that
\nBlack people
\ndon\u2019t suffer pain as much as
\nWhite people.<\/p>\n

So he sends you home with
\nNothing
\nand tells you to come back if it
\nGets
\nWorse.
\n(And you don\u2019t get the painkillers you hoped for.)<\/p>\n

\u201cI\u2019m in pain,\u201d you tell the doctor
\nbut he doesn\u2019t believe
\nYou.<\/p>\n

You\u2019re a white male in your thirties
\nbut you\u2019re
\nGay
\nand your doctor knows that
\nHomosexual men are prone to a
\nDisease
\nthat others are not.<\/p>\n

So he sends you for
\nBlood tests.
\n(And you don\u2019t get the painkillers you hoped for.)<\/p>\n

\u201cI\u2019m in pain,\u201d you tell the doctor
\nbut he doesn\u2019t believe
\nYou.<\/p>\n

You\u2019re a white cis male
\nbut you\u2019re in your
\nEighties
\nyour hearing isn\u2019t what it was
\nyou simply need him to talk
\nLouder
\nbut your doctor knows that someone of your
\nAge
\nis probably
\nConfused.<\/p>\n

So he talks to your carer over your head
\nand you never
\nHear
\nwhat he has to say about
\nYour health.<\/p>\n

\u201cI\u2019m in pain,\u201d you tell the doctor
\nbut he doesn\u2019t believe
\nYou.<\/p>\n

You\u2019re a six-year-old
\nGirl
\nwho is a little
\nPrecocious
\nand can\u2019t sit
\nStill
\nand your doctor knows that a
\nChild
\nof your age is probably eating too much
\nSugar.<\/p>\n

So, your mum is given
\nDiet advice.
\nNo
\nMore
\nSweets.
\n(And not the painkillers you both hoped for.)<\/p>\n

\u201cI\u2019m in pain,\u201d you tell the doctor
\nbut he doesn\u2019t believe
\nYou.<\/p>\n

You have
\nBipolar
\nand your doctor knows those with a
\nMental health diagnosis could be experiencing
\nPsychiatric symptoms.<\/p>\n

So he increases the dose of your
\nBipolar drugs
\n(And you don\u2019t get the painkillers you hoped for.)<\/p>\n

Your doctor?
\nHe\u2019s a
\nWhite
\nCis
\nMale
\nin his
\nThirties.<\/p>\n

He has no idea of his medical
\nPrivilege.<\/p>\n

Let\u2019s hope you didn\u2019t need those
\nPainkillers.<\/p><\/blockquote>\n

 <\/p>\n

So why poetry?<\/strong><\/p>\n

Poetry uses language in a compact but complex way. It can capture multiple stories in a few words \u2013 and through those stories, poetry breeds empathy. It allows us to take one step back from any facts and figures and revisit the situation from the point of view of \u201cthe other\u201d. In my poem, I use repetition to share my experience as a common one:<\/p>\n

\u201cI\u2019m in pain,\u201d you tell the doctor
\n<\/em>but he doesn\u2019t believe
\n<\/em>You.<\/em><\/p><\/blockquote>\n

Each time it\u2019s \u201cYou\u201d \u2013 and you are put in the shoes of the next individual. Each time, you don\u2019t know who you are now representing, but the repetition underlines that this is a recurring problem that many different groups of people face. The repetition of a lack of painkillers becomes a motif for lack of access.<\/p>\n

My poem starts a new line each time a word is significant. These words start with a capital letter and stand alone on a line. This layout makes it easier for certain words to be connected. For example: \u201cblack\u201d with \u201cnothing\u201d; \u201cfemale\u201d with \u201cemotional\u201d and \u201chormonal\u201d; and \u201cmentally ill\u201d with \u201cpsychiatric\u201d.<\/p>\n

These words have been specifically chosen to match the circumstances highlighted in epistemic injustice research: the dismissal of pain complaints by black patients as drug-seeking behaviour (Pozo & Rich, 2021: 91); a woman being stitched up without the use of anaesthetic after giving birth (Carel & Kidd, 2014: 529); and a brain haemorrhage being missed in a patient with a psychiatric history (ibid: 534).<\/p>\n

Research in the area of epistemic injustice and healthcare is vitally important because \u201cill people are more vulnerable to testimonial injustice [than other groups] because they are often regarded as cognitively unreliable, emotionally compromised, or existentially unstable in ways that render their testimonies and interpretations suspect\u201d (ibid: 530).<\/p>\n

Until epistemic injustice is eradicated from healthcare, marginalised and minority groups will continue to suffer pain \u2013 and other symptoms \u2013 unnecessarily.<\/p>\n

 <\/p>\n

References<\/strong><\/p>\n

Buchman, D.Z., Ho, A. & Goldberg, D.S. (2017). Investigating Trust, Expertise, and Epistemic Injustice in Chronic Pain. Bioethical Inquiry<\/em>. Vol.14. (10.1007\/s11673-016-9761-x).<\/p>\n

Carel, H. & Kidd, I.J. (2014). \u2018Epistemic Injustice in Healthcare: a Philosophial Snalysis\u2019 in Medicine, Health Care and Philosophy<\/em>. Vol.17. (10.1007\/s11019-014-9560-2).<\/p>\n

Gupta, D., Hansell, A., Nicols, T., Duong, T. Ayres, J.G. & Strachan, D. (2000). \u2018Epidemiology of Pneumothorax in England\u2019 in Thorax<\/em>. Vol.55. (10.1136\/thorax.55.8.666).<\/p>\n

Del Pozo, B. & Rich, J.D. (2021) \u2018Addressing Racism in Medicine Requires Tackling the Broader Problem of Epistemic Injustice\u2019 in The American Journal of Bioethics<\/em>. Vol.21. (10.1080\/15265161.2020.1861367).<\/p>\n

 <\/p>\n

Sarah Marie Graye is published indie author and a PhD candidate on the University of Kent\u2019s Contemporary Novel: Practice as Research programme. Her research focuses on illness narratives, specifically looking at memory, trauma and mental health. When she\u2019s not working on her current novel, Sarah Marie writes medical humanities-focused poetry and essays.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

Blog by Sarah Marie Graye It is said that knowledge is power. So what happens when the knowledge of your own body is ignored or dismissed?   This is how I felt when I was told I had asthma and I knew something else was going on. Eventually, I ended up in hospital having emergency […]<\/p>\n

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