Getting in the way of empathy
A few years ago, at the University of Liverpool, led by Erika Setzu, we conducted a simple research study into how people understood and explained their mental health problems. We asked people who either had been, or were currently, receiving care in residential psychiatric units, about the circumstances of being admitted to hospital and the ways in which they understood their experiences. One interview went as follows:
Erika: 'Do you know why [the problems began]?'
Interviewee: 'No, I don't know for certain. I had taken some pot before my first admission and I thought somebody might have dropped some acid on it. I also had a difficult childhood. I was physically and emotionally abused, sexually abused as well. This is very difficult for me to get my head round.'
A little later, the interview continued:
Interviewee: 'I started to hear voices, but they were not nice voices, they were horrible.'
Erika: 'Did you recognise them?'
Interviewee: 'It was the man that abused me . .. I met this man that was a builder, in construction, you know? And he said that he wanted to give me a job, but they were all lies, he was trying to con me. He took me back to his house, he locked the door and he had sex with me. ... And then other voices as well. I went to ... hospital and the nurses were very good to me.'
Erika: 'When you went to hospital what did they say it was wrong with you?'
Interviewee: 'Schizophrenia, paranoid schizophrenia.'
Erika: 'What do you think personally?'
Interviewee: 'What do you mean?'
Erika: 'Do you think it is what you've got?'
Interviewee: 'Oh yes, that's what I have got.'1
The most important to say is that - despite my criticisms of the 'disease- model' system of care that has evolved - I would criticise nobody involved in this man's care. Indeed, I believe that those caring for him performed their roles admirably. I would, of course, like to see the people who physically, emotionally and sexually abused him arrested and prosecuted. But I think the hospital staff offered him nothing but support and active, positive help. I think that it is appropriate that he approached medical staff for help, as that is (currently at least) the route to obtain help. And I have no doubt that he received proper care. Given the nature of his distress, I suspect that residential care and even (low dose, short-term) medication may well have been helpful. When people have been terribly abused, they can occasionally become so distressed - for example as a result of post-traumatic 'flash-back' memories - that they need this kind of help. If the distress is acute and someone is hearing abusive voices, medication can be a relief. If people need help and a place to stay, at present psychiatric hospitals may be the only realistic option ... although, as I shall explain later, I would like to see 'psychiatric wards' replaced with residential units based on a social model. And I can see a role for psychiatric medication, if used appropriately. In fact, medication may well be helpful if it targets those neurological mechanisms that underpin the source-monitoring problems that may contribute to the experience of hallucinations. In summary, I don't think that the nursing and medical professionals treated this man badly.
But I believe it is nonsensical to describe this man's experiences as 'paranoid schizophrenia'. It misses the point. I am confident that the diagnosis in this example was technically accurate - that is, reporting third person auditory hallucinations that cause distress justifies diagnosis of 'paranoid schizophrenia' in standard diagnostic manuals. But it simply fails to identify the man's problems adequately. The label - the diagnosis of 'paranoid schizophrenia' - is unnecessary, it doesn't capture his experiences (neither the experience of hearing voices nor his explanation of the reasons for it) and doesn't distinguish his experiences from other people's. The interviewee reports a childhood history of physical, emotional and sexual abuse, recreational drug use, and traumatic, sexual, assaults in adulthood. In particular, he describes how the adult rapist's voice returned as hallucinations, accompanied by other voices. The label fails to explain the link between the voices and the traumatic events to which they are related. This man's story is entirely understandable on a human level. Not only do we not need this label in order to understand his experiences, but the diagnostic label of 'paranoid schizophrenia' gets in the way. Despite the assumptions of the traditional 'disease model' of diagnostic psychiatry, his story alone has quite a lot of explanatory power, we can quite easily understand this story. The diagnostic label seems redundant after we've heard his story - it seems utterly foolish and inhumane to imply that, in some way, the 'illness' of 'paranoid schizophrenia' has caused these voices. We know - he told us - what led to the voices. 'Paranoid schizophrenia' medicalises, alienates and confuses rather than elucidates. Moreover, it arguably adds to the man's problems by introducing the idea that in addition to his existing misfortunes he also has a brain disease.
Equally, this man's story is unique. Other people, including some of my own friends and relatives, have also been given this label, without any point of similarity in their histories. What they share, what has led people to attach that label to them (the label sticks to them, not to the disembodied 'symptoms'), are certain relatively common experiences such as hearing voices or having crippling fears about other people. As I will explain below, hearing voices is common - very common - while being raped while working as a casual electrician is more specific and, thankfully, rarer. There are hundreds of thousands of people - probably millions of people - who hear voices and many become distressed. Their stories are ALL important and unique. Reductionist diagnoses like 'paranoid schizophrenia' divert attention away from these individual stories and the links between people's lives and their so-called 'symptoms'. And it's worth pointing out that, as well as reductionist, such labels are misleading. To attach the prefix of 'paranoid' to the diagnosis of 'schizophrenia' tends to imply traits of violence, suspiciousness or delusional beliefs, which can further undermine the truth of the stories being told. If a person is 'paranoid' and 'delusional', why bother calling the police about some supposed rapists ... ?