I’ve read that you first started to hear voices at age 14, can you tell me what happened?Every Sunday the radio would play the UK top 40. I listened to it and taped the songs I liked. All of a sudden the music went quiet and a troll-like voice issued from the radio: “What do you want, Dolly? How much do you want?” My skin prickled. I shut off the radio in fear. Deep demonic laughter followed. “Can’t get rid of me. I’m yours for life now.”“Who are you?”“I am the universe. I choose whether you live or breathe.” I got up and ran out of the room. I stopped listening to the radio from then on. As the days passed, I thought maybe I just dreamed it all. But they came back and haven’t left me yet.Was it one voice, or many? … What were the voices saying?At first it was only one distinct voice with whispering voices in the background, but not long after my first experience, one voice became many. The voices were quite vicious and abusive, ordering me to kill myself, telling me I was evil and a demon, that my family were better off with me dead and that I would bring harm to them just by being alive. If there was a disaster on the TV, they told me it was my fault. They called me a whore, a slut, that my heart was rotting. Imagine hearing that day in day out, for years on end.When you heard these voices were there any images that appeared in your mind? Did these become visual hallucinations as well?Before I heard my first voices, I was seeing shadows in my room, and sensing presences behind me, or over me when I slept, so they all came together more or less. It was only days after hearing that first voice, that I began to see demonic faces. The voices felt demonic too. I was too scared to know their faces so I didn’t have any images in my mind as to what they might look like.How difficult was it to go about your daily life whilst experiencing these voices?I had no life. I couldn’t function on a day to day level. I rarely went out or communicated with my family. I had no friends, no hobbies, no work, nothing to occupy me but terror. When that happens to you, you either lash out or freeze. I froze. I became a statue for over a decade. I did nothing; I couldn’t do anything. Even when I tried to brush my teeth, the voices were telling to stab myself in the eye with a toothbrush.Do the voices feel as if they coming from inside or outside your head? For over 20 years, they came from outside my head. I even felt the breath and the body heat of the voices I heard behind me. The more I deal with why I have my voices and accept they are part of me I can’t face or are too painful, some of them move into inside my head.Does the distance of the voice change with its character (i.e. angry voices compared to soft soothing voices?) They cover all sorts of distances. Sometimes they seem far and muffled, like they are in the other room. Sometimes they feel so close, their spittle touches me and disgust me. These close ones are the ones that are characteristically negative, abusive and overpowering.Do you believe that the voices you hear are a metaphor, holding traumatic experience safely?Absolutely. The evolution of my voices were at first thinking they were demons. When I was diagnosed with psychosis, I was relieved they were not demons so welcomed a diagnosis. But as the years went on and the medication turned me into a zombie but did nothing to address WHY I was having those voices. Pills do not cure trauma or abuse. Although voices produced terror, they also saved my life. The abuse at the hands of my dad and others was so horrible that if I believed what he told me about why he was abusing me, it would have ended with my suicide. Voices took it away from my heart and head to save my soul, to turn it into metaphor so I can deal with hell in installments. My voices are the sanest part about me. I have to learn to listen to their pain. Voices tell me about the state of my soul. If the voices are telling me I am an alien, it is telling me I am feeling alienated from the human race. If they tell me I am Jesus, God or all-powerful, I know it’s because I am feeling powerless and need to address that. Whether you want to describe voices as flesh, ghost or dream, I have to listen. What has changed over the years is the power dynamic of the voices. They controlled my life for many years, now I am in the driving seat, but I understand they have to be in the passenger seat until they have reached the end of their journeys.You mention that you find it very difficult to make phone calls. Please explain more about this.Try speaking on the phone whilst listening to music or talking on your headphones, and see if you are able to do it. It is physically impossible, because the voice at the other end of the phone is also disembodied, which is the right voice to listen to in the orchestra of confusion? That’s why I think you should have more than one way to contact crisis services than a phone.Often when we hear about conditions like voice hearing it’s considered a ‘broken brain’ issue. Would you agree the issue should be considered in this way?No, because they still haven’t proved it. But what I can prove to you is that people who hear voices have a broken heart that needs healing. The more my heart heals, the less power the voices have.Tell me about some of the art works you’ve produced and the role of auditory hallucinations in the process. Do voices help you in your work? Creativity seems like an exorcism of pain. One day I will write and make art about pretty things and being middle class, but I have still some terrors to release and some ghosts to make even more invisible. Art helps me do that.
Making Sense of Voices- Maastricht Interview Training
(This training is targeted at all mental health workers, criminal justice personnel, and third sector agencies)
Facilitators: Pete Bullimore and Chris Tandy
|The Crown Hotel, Crown Place Harrogate, HG1 2RZ – 3rd, 4th and 5th July 2013|
The Institute of Mental Health Building , Innovation Park, Triumph Road, Nottingham NG7 2TU- 17th, 18th and 19th September 2013
|Wirral Mind, 90-92 Chester Street, Birkenhead CH 41 5DL- 15th, 16th and 17th October 2013|
The Maastricht Interview is a semi-structured questionnaire that is used in therapy with voice hearers. It explores the experience at length and can assist voice hearers in a number of ways. It helps people overcome the shame of talking about the voices and encourages them to describe their experiences. The therapist will need to show the voice hearer that they recognise their experience by demonstrating a completely open-minded interest. By asking the right questions, in this way, the therapist can offer people the reassurance that hearing voices is in fact a well known phenomenon, enabling the voice hearer to feel properly acknowledged. The questionnaire should then facilitate discussion about the voices and confirm the reality of the experience. It is also a means of systematically mapping all aspects of the voices to gain more insight to the experience. This promotes acceptance and empowers people who hear voices.
(Places are limited)
Apply now: please email Karen Sugars email@example.com to book a place on this training
Some quotes from our previous attendees from our joint training initiatives:
‘A truly inspiring training experience. This gave me so many useful strategies ideas for working with voice hearers’
‘Logical and practical solutions for working with voices’
‘It focuses upon Romme and Escher’s ground breaking work with voices which is fantastic!’
‘Excellent trainers that consider the key implementation issues from a voice hearer and worker perspective’
From The Independent Tuesday May 14 2013 – We need to change the way we talk about schizophrenia If we only ever talk about schizophrenia in the context of a violent murder, is it any surprise that the public think people with mental illness are dangerous?
From The Observer Sunday 19 May 2013 – Mental illness: the claim that abuse is behind psychosis is irresponsible Oliver James’s assertions are unhelpful and risk demonising people
Eye Movement Desensitization Reprocessing Therapy. It’s on page 11 via this link – No 67 Spring 2013 http://www.yourvoicesheffield.org/media/YV67final.pdf
At first Denise looks for quick and painless solutions; then, in rehab, she courageously begins to work her way through the problems of Borderline Personality Disorder, depression and substance abuse.
- Stress and how to avoid becoming overwhelmed.
- Why your emotions matter to you and to others.
- What you can do to harness the energy of your emotions and make them work for you.
- How you can become calm, energized, focused and more aware of yourself and others.
From Richard Bentall:
Last week, Dr Frank Hirth of King’s College London was on Radio 4 saying that his research into the neural circuitry of the fruit fly might help us understand neurodevelopmental disorders such as schizophrenia. To cut a long story short, I got copied into some correspondence about this between Dr Hirth and a colleague and was moved to join in as follows:
My friend and colleague Dave Pilgrim forwarded me your email to him, which I feel moved to reply to. I am copying in various colleagues who are as concerned as I am about the naive biological reductionism that seems to be dominating media discussions of mental health these days. Briefly, the problems with this view when applied to ‘schizophrenia’ are:
(i) Schizophrenia is a meaningless construct
There is no syndrome of schizophrenia and nobody can agree on who is schizophrenic. To my knowledge, no statistical study has ever identified a cluster of symptoms that correspond to the Kraepelinian concept or its subsequent revisions. Most recent studies have converged on a multidimensional model that incorporates all psychosis diagnoses (schizophrenia, schizoaffective disorder, bipolar disorder, delusional disorder, depression with psychotic features etc) within five dimensions of positive symptoms, negative symptoms, cognitive dysfunction, depression and mania/excitability, or even more complex structural models (see Demjaha, A., et al. (2009). Combining dimensional and categorical representation of psychosis: the way forward for DSM-V and ICD-11? Psychological Medicine, 39, 1943-1955 and, one of my own papers, Reininghaus, U., Priebe, S., & Bentall, R. P. (in press). Testing the psychopathology of psychosis: Evidence for a general psychosis dimension. Schizophrenia Bulletin, available online). In recent field trials, the proposed DSM-V criteria for schizophrenia generated a derisory kappa of 0.46, showing that clinicians working with a precise definition of the disorder and following a diagnostic interview often could not agree on who was schizophrenic and who was not (Regier, D. A., et al. (2013). DSM-5 field trials in the United States and Canada, Part II: Test-retest reliability of selected categorical diagnoses. American Journal of Psychiatry, 170, 59-70)!
(ii) Heritability coefficients are misleading
It is often forgotten that heritability coefficients are, actually, just fancy correlation coefficients. We all know, or should know, that correlation does not necessarily prove causality. Heritability coefficients are statements about populations and not individuals so that it is wildly misleading to suggest that high heritability = mostly genetically caused (for a detailed discussion of this, see Bentall, R. P. (2009). Doctoring the mind: Why psychiatric treatments fail. London: Penguin.).
In fact, precisely because heritability coefficients are correlations which attempt to parse up the variance in a trait to genetic and environmental causes, low variance in the environment leads to inflation of the apparent effects of genes. This is why, for example, IQ is highly heritable in middle class families (where environmental variation is low) but very low in working class families (where environmental variation is high) (Turkheimer, E., et al. (2003). Socioeconomic status modifies heritability of IQ in young children. Psychological Science, 14, 623-628). Also, heritability coefficients assume an additive model of genes and environment, which is wildly implausible given what we know know about how genes work. Again, assuming an additive model when there are G x E interactions leads to massive inflation of heritability and an underestimate of environmental effects (Dickins, W. T., & Flynn, J. R. (2001). Heritability estimates versus large environmental effects: The IQ paradox resolved. Psychological Review, 108, 346-369). This is probably why, as you know, molecular estimates of heritability are generally much lower than those based on the methods of classical genetics. The ‘missing’ heritability in these studies is probably phantom heritability.
Incidentally, you will also know from the genetic studies that you cite, that the consensus amongst geneticists is now that many common alleles (perhaps many hundreds) probably each confer a tiny risk of all kinds of severe mental illness. Although some CNVs have much higher association with psychosis, they account for only a small proportion of patients and are also associated with intellectual disabilities and autism (Owen, M. J. (2012). Implications of genetic findings for understanding schizophrenia. Schizophrenia Bulletin, 38, 904-907. doi: 10.1093/schbul/sbs103). This is further evidence, if ever it was needed, that schizophrenia is a meaningless construct and confirms the impossibility of devising a genetic test for the disorder.
(iii) There is massive evidence that environmental factors are causal in severe mental illness
The implications of ii above are that you can’t estimate environmental influences from heritability estimates – you have to look for them and measure them in their own right. Recent studies have pointed to a wide range of environmental factors associated with psychosis. These include social disadvantage, migration, living in cities and various forms of victimisation. I attach a recent meta-analysis I conducted on the evidence linking childhood adversity to psychosis (Varese, F., et al. (2012). Childhood adversities increase the risk of psychosis: A meta-analysis of patient-control, prospective and cross-sectional cohort studies. Schizophrenia Bulletin, 38, 661–671. doi: 10.1093/schbul/sbs050.) The bare odds ratio between childhood trauma was stable across methodologies (retrospective/prospective) and came in at about 3, much higher than any association with common alleles. More importantly, there is evidence of a dose response effect, with ORs climbing to around 50 for children who have been multiply traumatised. Reaction in the psychiatric community has sometimes been bizarre, with convoluted attempts to explain away the data (see a recent editorial I wrote about this, also attached).
(iv) Brain studies do not provide clear evidence of neurodevelopmental disorder in psychosis
The evidence linking the basal ganglia to psychosis is far from clear cut. The best evidence is from response to antipsychotics, but recent studies suggest that only about 20% of patients show a genuine clinical response (Marques, T. R., et al. (2011). The different trajectories of antipsychotic response: antipsychotics versus placebo. Psychological Medicine, 41, 1481-1488). In any case, abnormal basal ganglia activity could just as likely be attributed to environmental factors – animal studies show that chronic victimisation leads to sensitisation of dopamine pathways in this part of the brain (Selten, J.-P., & Cantor-Graae, E. (2005). Social defeat: Risk factor for psychosis? British Journal of Psychiatry, 187, 101-102).
Current structural and functional neuroimaging studies of psychosis are probably not to be trusted for a variety of complex methodological reasons (Ioannidis, J. P. A. (2011). Excess significance bias in the literature on brain volume abnormalities. Archives of General Psychiatry, 68, 773-780; Button et al. (2013), Power failure: Why small sample size undermines the reliability of neuroscience, Nature Reviews Neuroscience, published online 10 April 2013; doi:10.1038/nrn3475 – this study estimated that the median statistical power of 461 individual fMRI studies contributing to 41 separate meta-analyses was 8%!), not least the emerging evidence that drugs affect brain structure (Ho, B.-C.,et al. (2011). Long-term antipsychotic treatment and brain volumes. Archives of General Psychiatry, 68, 128-137).
In any case, the observed abnormalities could well be the consequence of social and environmental factors (Hoy, K., et al. (2011). Childhood trauma and hippocampal and amygdalar volumes in first–episode psychosis. Schizophrenia Bulletin. doi: 10.1093/schbul/sbr085).
(v) A narrow neurodevelopmental approach is damaging to patients
There is little evidence that the biological approach to psychiatry is benefiting patients. Outcomes for patients suffering from ‘schizophrenia’ have not improved since the Victorian age and an increasing number of people are disabled by psychiatric conditions. This is precisely the opposite to what has happened in physical medicine, where genuine advances have led to improved outcomes and reduced disability (see my Doctoring the Mind, and also Whitaker, R. (2005). Anatomy of an epidemic: Psychiatric drugs and the astonishing rise of mental illness in America. Ethical Human Psychology and Psychiatry, 7, 23-35). Just as importantly, although it is often assumed by doctors that promoting a biological understanding of psychosis will reduce stigma, empirical research provides strong evidence that the opposite is the case, and that biological models actually promote stigma (Read, J., et al.(2006) Acta Psychiatrica Scandinavica, 114, 303-318; Angermeyer, M. C., et al. (2011). Biogenetic explanations and public acceptance of mental illness: systematic review of population studies. British Journal of Psychiatry, 199, 367-372.)
The claim that biological research (on flies or whatever) will one day lead to a cure for schizophrenia is a common rhetorical trick designed to gain publicity and guarantee grant funding. I have no problem with research on the CNS of flies, which seems valuable in its own right. But linking flies to schizophrenia (whatever that is) is really about self-promotion and is damaging to the interests of patients.
· The problem with diagnosis
· Take a critical and thoughtful perspective on traditional ways of understanding voice hearing and visions.
· Understand the potential pitfalls of the claims made from other therapies.
· Take a respectful and ethical approach to the experience of voice hearing and visions.
· Understand the potential connection between trauma and voice hearing and visions.
· Develop new ways of talking to and working with people who experience voices and visions.
On Thursday, 21st March 2013, from 10.30 am -1.00 pm at the Friends Meeting House, St John’s Street, Bury St Edmunds, Suffolk IP33 1SJ this workshop aims to explore the experience of this diagnosis, the things people would like help with, looking at what that help might be.
Telephone 01473 329316
My Secret Past
The aim of the documentary is to bring personal issues with mental health out into the open to help people realise that it is something which people do have difficulty with, and that it doesn’t have to be something we can’t talk about openly. This is to be a sensitive documentary aiming to capture the realities faced by mental health service users, in order to help raise awareness of these important issues. Jon and Nicolette who are working on the programme are really keen to speak to anyone who may be interested in taking part in the programme by sharing their experiences with mental health.
Whatever your background and history of mental illness, if you feel able to take part Jon and Nicolette would really like to hear from you.
call 07802 604756.