Epistemic Injustice, Medically Unexplained Symptoms and Mental Health

For many years I worked with men and women who had been subjected to sexual abuse when they were children. Over time it became more and more obvious that the mishandling of childhood trauma can sometimes just be the beginning of a lifetime of encountering ‘epistemic injustice’ (Fricker, 2007). Epistemic injustice is the description Miranda Fricker applies to the insidious way in which inequity is built into many of our systems, operating behind the scenes and affecting us in serious and significant ways, whether we are aware of it or not.

The first form, ‘testimonial injustice’ is where your voice is not heard. Your ‘testimony’ is not considered valid, unless it is validated by a ‘professional’, in other words, someone with more power and agency than you. In the case of people who have experienced abuse, when they have spoken out about their experience it may not have been taken seriously, or it may have been handled in such a way that the end result was to minimise the experience, sometimes deliberately, sometimes through a lack of education about how to respond to such a disclosure.

Many of the individuals I have worked with over the years, even if their initial disclosure was sensitively and compassionately managed, went on to experience inadequate responses to their disclosure of abuse further down the line. Legal systems ill equipped and ill informed would often generate further trauma through their invalidating systems, following which many people, both families and the individuals who have experienced abuse, withdraw and try their best to get on with their lives. The myth that people want to be victims is something I strongly challenge. People who have been subjected to sexual abuse ARE victims of crimes that have been committed against them. This does not mean they seek to be perceived as victims or seek to receive any benefit from their ‘victimhood’. Most people really do just want to live their lives, as best they can, as happily as they possibly can, often in systems that are deliberately set up to thwart this. (Mills, 2018, Mills and Klein, 2021)

When finding support that helps us to withstand the vicissitudes of life is difficult to access, and structures don’t uphold systems that offer justice and restoration, emotional responses to trauma and subsequent epistemic injustices are endured in myriad ways. Human beings deal with a lot in life, and one of the ways we cope is by repressing our pain, because it’s too much, we don’t know what to do with it, and there is not always a supportive environment in which we can safely make sense of it. Repression takes place in many ways and we are very creative at pushing away unwanted feelings, from being super busy, to numbing ourselves with substances, through punishing ourselves like tyrants bullying the most fragile parts of ourselves, really, the ways in which we can repress and suppress our emotions are endless. Sometimes we do such a good job of this process that we forget what we were originally repressing, and just live our lives with an icky sense that something is wrong while shutting out the original knowledge because it feels too horrible.

It’s really important to know that these super creative techniques that we use to survive trauma do not mean we are mentally ill. They do not mean that we have broken brains, or personality disorders, or that there is something wrong with us. What is wrong, is that something incomprehensibly disturbing, or traumatic, or upsetting, or distressing, has happened to us, and we are trying our very best to cope, in the case of CSA often from an early age. Some of the ways we learn to cope can get us through childhood, but as we move into adulthood they no longer do the job, they become less effective, so we look for other ways of coping. Sometimes by this point not even connecting our need to cope with the original trauma. The ‘coping’ in it’s sometimes puzzling forms, feels like it’s become part of who we are, and when we begin to struggle and seek help, it is here that we sometimes encounter Miranda Fricker’s other dominant form of epistemic injustice – ‘hermaneutic injustice’. This is where there is a vacuum, a lacuna, as she calls it, an empty space where there should be a question about ‘what happened to us’, but it doesn’t exist. Instead, the questions we are asked are about our behaviour, our psychology, our struggles, our sometimes seemingly self-destructive actions. We are asked about our illnesses, our symptoms, our emotions, and then – when nobody knows what to do about them (for they are not organic in origin, there is no damaged brain or wonky neurochemistry to be found), we are instead pathologized. Medically Unexplained Symptoms and Personality Disorders are the go-to physical and psychological diagnoses when a medical or psychiatric model doesn’t have the answers, or a professional doesn’t know what to do with symptoms of distress. At this point many people find themselves at the beginning of an unpleasant relationship with professional services which be very difficult to exit.

Medication for medically unexplained symptoms often takes the form of psychotropic medications. Psychotropic medications often have undesirable side effects, which in turn lead to prescriptions of further medication to manage side effects. These side effects are perceived as illnesses of their own, escalating and becoming seen as co-morbidities rather than multiple side effects of medication. These adverse effects are iatrogenic illness in action. The illnesses are syndemic in nature (Ecks, 2021), and often lead to further reduction of well-being, which leads to further marginalisation and dysfunction, which increases symptoms and alienation. It was not uncommon for members of groups that I worked with who were suffering from long term chronic physical and psychological health ‘conditions’, MUS’s, to be taking upwards of 10 different medications, none of which had been co-trialled, all of which were disrupting any possibility of healing (Martin, 2006)

The point is, if anyone tells you that you have medically unexplained symptoms, without taking the time to ask you ‘what’s happened to you?’, then they are at fault not you. Although it isn’t easy, try and find someone who does take the time to ask and and listen. There are a huge and growing number of grassroots organisations, activists, experts by experience informed and participatory, inclusionary minded organisations that are doing just that. If someone gives you a questionnaire that doesn’t ask you what happened to you, but tries to fit you into tick boxes, then know that you are experiencing an example of epistemic injustice. It isn’t good enough.  Step back and take the time to find someone who will listen to you and help you to make meaning of your experience, your feelings, your pain and distress. The Power Threat Meaning Framework (Johnstone and Boyle, 2018) PTMF is a guide that’s being used by more and more therapists and their clients, it was designed co-creatively with experts by experience, is designed to be used co-creatively, and is non-diagnostic in orientation. You are a person, not a set of symptoms to be pathologized. You know your experience better than anyone no matter how many qualifications they have. You are the expert of you, and there are people out there who know that and respect it, and, have the skills to work with you and help you to heal. If you are in doubt, please know this, it is your Human Right to participate in the kind of care you receive, if you so wish (Beresford, 2020, Patel et al., 2018), and though it’s not easy to exercise our rights in an environment of epistemic injustice, there are people out there right now fighting for equality and they will welcome you and your lived expertise. 😊

BERESFORD, P. 2020. ‘Mad’, Mad studies and advancing inclusive resistance. Disability & Society, 35, 1337-1342.

ECKS, S. 2021. Depression, Deprivation, and Dysbiosis: Polyiatrogenesis in Multiple Chronic Illnesses. Culture, medicine and psychiatry.

FRICKER, M. 2007. Epistemic injustice : power and the ethics of knowing, Oxford ; New York

©2007

Oxford, Oxford ; New York : Oxford University Press.

Johnstone, L. & Boyle, M. with Cromby, J., Dillon, J., Harper, D., Kinderman, P., Longden, E., Pilgrim, D. & Read, J. (2018) The Power Threat Meaning Framework: Overview. Leicester: British Psychological Society.

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MILLS, C. & KLEIN, E. 2021. Affective technologies of welfare deterrence in Australia and the United Kingdom. Economy and Society, 1-26.

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