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November 6, 2019 by Ben Gray | Mental Health Today

What it’s like to hear voices and how ‘democratic psychiatry’ can help

A researcher in the field of mental health – diagnosed with schizophrenia in 2003 – compares his personal experiences of hospitalisation and peer support.

I was detained under Section 3 of the Mental Health Act of the United Kingdom for twelve months. I was both obliged to stay in hospital and forced to take antipsychotic medication against my wishes, though physical force was never used against me.

My strange religious beliefs were perhaps quite rightly classified as delusions and discounted by my psychiatrist, nurses, and also my family, but this left me with the impression that my experiences, however negative and painful, were also being discounted and that I was not being listened to in order to be more deeply and humanely understood. The words of the oft-quoted American psychiatrist regularly came to my mind: “If you talk to God, you are praying; If God talks to you, you have schizophrenia.”

Among the people I met during my time in hospital was Rosemary. She was an unassuming, quietly spoken woman, unremarkable apart from an air of sadness. Rosemary had told me and many of the nurses that she would be better off dead than hearing any more of the terrible voices that kept her from sleeping. Better up there with her mother in heaven, she told me, than down in the hell of the psychiatric ward with her voices. Within a few days of being discharged, Rosemary was with her mother again. The nurses called a meeting in the communal lounge. There had been an accident: Rosemary had taken her own life. The girl next to me at the meeting broke into tears.

Night after sleepless night and through the long, seemingly endless days in the ward, where smoking and television stood in place of any attempt of therapy, I and my fellow patients experienced similar feelings to those of Rosemary: feelings of loss, isolation, pain, sorrow, self-pity, confusion, and helplessness.

“You’re alone,” an insidious voice whispered to me. “You’re going to get what’s coming to you.” “You’re going down there!” it shouted. “You wait until you see what I’m going to do to you!”

When I heard my voices, which would often shout at me, no one around me moved or looked startled. It was just me hearing the voices. I tried not to answer them. Better to ignore the voices, repress them, and soldier on, I thought. I had seen others screaming back at their voices, and it had left me with mixed feelings of consternation, pity, and fear. I did not want to look mad, like them. Any symptoms of hearing voices would go on medical case notes, be raised as proof of insanity at my case reviews by my psychiatrist and the nursing team, and keep me locked up in the hell of the ward away from family, friends, and what seemed like a long-distant normal life.

I learned several important lessons too: never admit that you hear voices; certainly never answer them; do exactly as you are told by staff or concerned family or you will be seen as ill; never question your diagnosis or disagree with your psychiatrist; and be compliant and admit your mental illness or you will never be discharged and your medication will be increased.  If you refuse medication, as I did initially, you will most likely be given a depot injection of an antipsychotic drug.  In my opinion, depot injections are used punitively to coerce compliance with oral medication (or making people take their tablets), despite these depot injections having very bad, humiliating and painful side effects (such as muscle stiffness and the inability to sit still), in my personal experience.  The side effects of depot injections are so severe, that you soon learn to comply with oral medication and take your prescribed antipsychotic tablets.

All the time, the voices got worse. “Hot fire in your eyes!” shouted a voice to me in the hell of the ward. “That’s where you’re going. In the fire of the sun!”

Many of the people, and there have been hundreds, with mental illness who I have talked with both as a patient and as a researcher and academic, tell me that they have had to suppress and hide their voices in order to be considered well, stable, and healthy. Not only is this a suppression of symptoms, but it is also a suppression of people’s personhood. Traditional psychiatry, in this gloomy and pessimistic view, could be argued to be little more than an instrument of social control and of oppression and a system of scientific belief that perhaps unintentionally crushes people’s subjectivity, choices, human rights, and free will.

Put very crudely, popping a pill is far less of a burden on a health service that has limited resources, severe pressures on beds, and a lack of inpatient provision, which often depends on family carers who lack the knowledge and expertise of dealing with people with mental health problems who may be in distress and where care in the community is limited in scope and often means no care in the community, leaving people with mental health problems with the feeling that they are alone, forgotten, invisible, and ostracised.

The final straw of my negative experience of traditional psychiatry was my appeal to be set free from Section 3 and released from hospital against my psychiatrist’s advice by a Mental Health Tribunal.  There are three members on the Tribunal’s panel, two of whom are professionals (one legal, usually a solicitor or barrister and one medical, usually a psychiatrist) and only one lay member, a person who is not medically or legally trained but with some mental health experience. I thought that the odds were against me and that the whole process was biased by elites and those on the upper echelons of society.

‘Democratic psychiatry’

There is little study of what the voices of people diagnosed with schizophrenia say to them, which would make people’s experiences more valid and meaningful and also lend itself to a more human account of mental illness. People’s experiences of hearing voices are silenced, which can only augment ignorance and fear, both in society and in the mental health-care system. Little attention has been given to what people with mental health problems think and feel and what treatments they would prefer.

What I have learnt as an academic and researcher, as well as a mental health patient labelled with schizophrenia, is that what people with mental health problems want is to be treated as equal citizens with equal human and medical rights. People with mental health problems who hear voices or hallucinate want to be valued, as we all do, not feared and ostracised. They want their views and opinions taken into account, especially as regards what sorts of treatment they have and in their care plans. They want a right to accept or refuse medication and not have it forced upon them supposedly for their own good. At the very least, people with mental health problems want their stories, narratives, and voices to be valued and taken into consideration. Such an approach would take people’s diversity, and their diverse experiences and beliefs, into consideration and not label people as mad or bad but value them as human beings, with all the faults and strengths that being a human being entails. Such an approach would give rise to a more democratic and person-centred psychiatry, which would also view mental health patients’ experiences as a form of expertise to be shared with professionals rather than discounted as delusions.

What is required is a balance of perspectives between traditional psychiatry and the diverse experiences of people with mental health problems, with the aim of achieving a consensus on pathways of treatment and new, innovative, and alternative methods of mental health practice (Stastny and Lehmann, 2007). Hearing voices groups and voice hearers’ internet discussion forums are just two contemporary examples as is the use of advance agreements and directives. Advance agreements and directives allow people with mental health problems to stipulate their preferred treatment when they are stable and well, in advance, so that their preference is known if they become unstable and unwell in the future.

[Editor’s note: in this month’s Queen’s Speech, the UK government pledged to introducing a new Mental Health Bill in the coming 12 months. This promises to deliver choice and autonomy to patients, further strengthening the legal weight of advance preferences so as to make them wholly binding.]

Central to this process is the rise of democratic psychiatry and the hearing voices movement, headed by the eminent psychiatrist Marius Romme and organizations such as IntervoiceAsylum Magazine, MindFreedomWorking to Recovery, and the Hearing Voices Network.

Democratic psychiatry and the hearing voices movement do not ostracise and silence people who hear voices but create space for their voices, narratives, stories, personal thoughts, and experiences, which will lead to more humane and holistic approaches of understanding and treating schizophrenia and mental illness in the future. This means that psychiatry rather than doing things “to” or “for” people must begin to work “with” them.

Dr. Ben Gray is an academic and researcher in the field of mental health who was diagnosed with schizophrenia in 2003, when he spent a total of 12 months in a mental health hospital. He has since had what he describes as two major relapses, in 2006 and 2013.

Source: mentalhealthtoday.co.uk/blog/disorders/what-it-s-like-to-hear-voices-and-how-democratic-psychiatry-can-help

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