How can you best engage with a person who has psychosis, when their beliefs seem to differ radically from your own? What if those beliefs differ radically from what you know as reality?
Consider a Sunday morning – you wake to the sound of the playlist set as your alarm. Instead of snoozing the music and curling up for a few more minutes, you realise that today feels very different somehow. At first you cannot place what is wrong, but you start to notice that the lyrics of the songs are about you. Not just that you can relate, but there are messages behind the songs that specifically refer to you. You are about to dismiss this as the glitches of a sleep-addled brain, when you notice that the light filtering through the curtains looks peculiar. You can’t quite describe it, so you approach the window. Looking out, your neighbours move in a just slightly awkward routine, like marionettes pulled by unseen strings in an uncanny facsimile of the neighbourhood scene. Distracted by what you’re seeing, you then notice you can hear their voices, as clear as if they were beside you. Yet they don’t appear to be speaking.
As the itchy discomfort of your anxiety takes hold, you go to your garden in the hope that the cold fresh air will bring you down to earth. Lying on the grass, you spot a piece of plastic rubbish: another day, you might not have noticed; today, you see it is the unmistakable shape of a bullet. This sight is a catalyst in your mind, which then races as you realise you can put the pieces together. The messages in the music were telling you that you are part of a special mission, the bullet is a warning about those who mean you harm, but you are flooded with relief as you understand that you were chosen to save the world from the next pandemic.
Your partner can’t seem to grasp the reality of what you know to be true. You lay out all the pieces of the puzzle, but other people cannot (or will not) understand. It would not seem so improbable if they knew what you knew. You grudgingly agree to see your family doctor (out of courtesy to your partner), only to be told that mental health services are what you need.
Having repeated your story for a third time to the clinician in a depressingly bland room, with a tissue box strategically dividing your side of the table from theirs, you begin to suspect they are not taking you seriously. When you explain the connections, they pause (or worse, cut you off). They keep changing the topic, while you’re trying to follow the threads. They keep asking questions instead of offering the answers you need. As the meeting starts to feel like an interrogation, your trust ebbs away. When they suggest you may need medication for your ‘psychosis’, your doubts about their intentions grow.
You leave the consultation room in a hurry as you fear this is part of the same conspiracy, and you need to fulfil your mission to save others. You feel scared, angry and confused when a group of professionals you have never met comes to your house talking about hospital admission. By now, your worst fears about these people are confirmed.
The patient’s voice was found to be ‘lost within processes that are out-of-date and can be uncaring’
This is a fictional example of how things go wrong in a clinical encounter. Nonetheless, despite countless examples of positive interactions in mental health services, this type of situation is not uncommon. Nor is the use of legal powers to detain or treat vulnerable people against their will, with the aim of protecting them from harm. Interdisciplinary research in this area is exploring how young people may feel helped or harmed by mental healthcare interactions by analysing their conversations. Recurring themes emerging from this research include not being listened to, not feeling understood or feeling dismissed. The reason being that the clinician may be trying to find an immediate solution to a clinical problem or may be trying to avoid disagreements, rather than engaging in a dialogue with the person in front of them.
In England and Wales, rates of compulsory detention for mental illness have been rising for many years. It was in this context that the 2018 Independent Review of the Mental Health Act was conducted. Among many critical findings, it reached the (sadly unsurprising) conclusion that particular ethnic groups as well as autistic people and those with intellectual disabilities were particularly disadvantaged in these situations. A clear case for change was made as the patient’s voice was found to be ‘lost within processes that are out-of-date and can be uncaring’. A key theme emerging from this review, based on service-user experience, was that of ‘epistemic injustice’:
Many patients report being disparaged, disbelieved or ignored and have been subject to judgmental and paternalistic behaviour from those caring for them.
‘Epistemic injustice’ is a notion borrowed from the philosophical literature and developed by Miranda Fricker. This form of injustice occurs when a person is discredited in their capacity as a person with valid knowledge, due to negative connotations linked to their social identity (this may include their gender, race, socioeconomic status, physical attributes or neurodivergent status). This notion has been applied in mental health research to describe experiences during interactions with the mental health system, such as the following by K Steslow:
What I found distressing – what threatened to erode any composure I could manage in hospital – was not the involuntary commitment, but rather the distinct feeling of being unheard. Everything I said or did was taken to be a product of my illness and categorised accordingly. I had questions and worries and thoughts and even a good deal of imagination, but I was cut off from all meaningful conversation by the veil of my diagnosis, through which my speech and behaviours passed before doctors and nurses heard, saw, and interpreted them.
Returning to our story at the start of the article, let’s suppose that, during the consultation, our protagonist expressed concerns about one of the neighbours abusing a relative. Her concerns were dismissed as they were assumed to be paranoid ‘delusions’ (defined by the DSM-5 as ‘fixed beliefs that are not amenable to change in light of conflicting evidence’). However, it later transpires that her belief about the abuse is factually accurate. In this case, a prejudiced assumption was extended to the whole of the person’s communications, leading to epistemic injustice (where her capacity to relay knowledge competently was wrongfully denied), and harm resulted due to a delayed investigation.
Phenomenology aims to understand subjective experience without preconceptions
Furthermore, let’s suppose that what the person has been experiencing is not wholly negative but may be, albeit imperfectly, an adaptive response. Although others can’t understand it, the mission that she was given makes her feel like her life has purpose and significance again after a very stressful period when she felt worried, isolated and hopeless. She feels a new sense of connection and belonging, which is helping her overcome negative emotions.
However, societal stereotypes can exert influence without us realising. Our protagonist may internally associate the concept of ‘psychosis’ with ‘illness’, ‘madness’, ‘irrationality’ and ‘dysfunction’. As a result, she now feels shame and distance again, and feels at a loss to understand who she is as a person. Here, another related concept from philosophy, termed ‘hermeneutical injustice’ may help us. This can include the harm that arises when a person attempts to reconcile their own self-understanding with a different explanation of their difficulties imposed by others. Hermeneutics is the study of interpretation, and the term is used in this context to refer to the interpretation and meaning of human experience.
These philosophical concepts have value in helping us rigorously examine what can go wrong in a communicative exchange. However, it is equally pressing to consider how best to redress the harm occurring when someone is undermined in this way (ie, when doubt is unjustly cast on their ability to know about and interpret their experience). Phenomenology is a branch of philosophy concerned with subjective experience, and this tradition can provide a wealth of tools for re-examining our priorities in mental health. Applied to the investigation of unusual experiences (such as delusions) in mental health, phenomenology aims to understand subjective experience without preconceptions.
An approach at the individual level alone will not suffice to address the relevant structural inequalities within society, and those broader issues can perpetuate negative stereotypes and power imbalances in mental healthcare. However, a phenomenologically informed approach to treatment can enable a virtuous circle in which clinician’s attitudes and dispositions allow them to better accommodate patients’ experiences, driving a more collaborative type of engagement, which ultimately better informs all parties in their future interaction.
A key virtue in this context is that of ‘giving uptake’. Merely listening to someone’s utterances and hearing their words is insufficient. Giving uptake requires that the listener reorients themselves to the speaker as a person with inherent knowledge of their experiential world, whose communication is worthy of consideration. This does not necessarily mean endorsing and promoting someone’s delusional beliefs, but rather entails keeping an open mind as to their experiential origins, function and meaning.
In the context of psychosis, phenomenological research has shown that the person may be confronted with a radically altered experience of reality and feelings of perplexity (as in the opening story). The narrative (or delusion from the clinician’s perspective) created from this altered experience may be the most compelling way that the person can make sense of their life during this time. And yet, miscommunication abounds when trying to relate something so novel and implausible, that no ready-made words or concepts seem to fit. In other cases, a delusion may help maintain a sense of meaning and purpose in the face of serious adversity and overwhelming negative emotions. This is, of course, not to claim that delusions are usually a positive experience. In many cases, delusions are associated with tremendous suffering and difficulty in life.
Carers, clinicians and family members of individuals with psychosis have a challenging task in learning how to listen. All the while, the individual having the psychotic experience is dealing with a far greater challenge of their own. Listening well entails perceiving others as individuals with valuable and credible knowledge of their experience, and engaging in communication that does not discount or distort what is meaningful to both parties. These meanings may not always overlap, nor neatly reflect a shared reality, however they are revealing the truths of people’s experience. This process has value beyond the consultation room. Perhaps the ability to bridge the divide between people with markedly different beliefs and experiences is a skill we all need to cultivate.