When we hear that someone has “gone mad”, we might picture people locked in mental hospitals, talking to themselves incoherently, while doctors in white coats hand out medication. Or if we read in the news that there has been a violent assault, we might assume that it was a result of someone “gone mad” who had mental health issues. We might have seen movies such as A Beautiful Mind or Shine, and taken on a flavour of the disruption that hearing and seeing things that others can’t brings.
But what does it really mean to have a diagnosis of psychosis or schizophrenia, and are our perceptions of people with these symptoms accurate?
Debra Lampshire, who now works for the University of Auckalnd and the Auckland District Health Board, has been hearing voices for over 30 years. This is one of the symptoms of psychosis (the word psychosis means to lose touch with reality). In a chat over coffee she says some surprising things, including the insight that hearing voices isn’t the main problem: it is the way people interpret or relate to the voices they hear that can bring trouble.
Voice hearing: the facts
In recent years psychological researchers have been interested in the experiences of people who hear voices. This has occurred alongside the service user movement within mental health services, which has added the perspective of what it’s actually like to be a user of services to the dominant medical perspective, which tends to focus on symptoms and treatment.
What we know is that the prevalence rates for voice hearing vary widely. In a literature review in 2011 that looked at 17 surveys from 9 countries, prevalence ranged from 0.6-84 per cent of the population, with a median of 13.2 per cent. This variation is due to differing definitions, methodologies and cultural factors. It was suggested by the authors that if the general public knew that between 5-15 per cent of the adult population hears voices, it might help destigmatise the experience, making it less frightening to tell others about it, and lessening the isolation and shame that often accompanies it.
What is clear from many of these studies is that there are many people who hear voices but are not distressed by them, and live well with them. In population studies of non-clinical groups (people who are not patients), for example a 1991 US study of 20,000 people, only a small minority of those who heard voices were troubled by their experience.
An example of positive associations with voice hearing comes from widows and widowers who hear their departed partner’s voices. Other positive experiences from voices include providing companionship or giving advice. The difference between people who hear voices who have come to attention of mental health services, and those who hear voices but keep functioning, seems to be the distress that the voices cause.
Lampshire explains that in the past, mental health services would ask “Are you hearing voices?”, and “an answer of ‘yes’ meant I was sick, whereas ‘no’ meant I was alright”. She says that traditionally, hearing voices was seen as a very negative sign of madness by mental health services. She doesn’t see it that way now.
“The voices weren’t actually the issue; I can function at a level with the voices that I’m content and happy with. I see myself as co-existing with my voices; the difference is that I’ve taken charge, by working out the role that voices played and their reason for being in my life.”
What do voice hearers experience?
Dr Vanessa Beavan researched New Zealanders’ experience of hearing voices in her PhD thesis and found that when people hear voices they can be both positive, saying things such as “you will manage,” and negative, using hurtful names or criticising behaviour.
It is rare to hear only positive voices or negative voices, with the majority of people hearing both.
“Like most people who hear voices, I hear good and bad voices,” explains Lampshire. “The good voices sustain me and the bad voices tear me apart. Bad voices have this power to pull you in… and positive voices are easier for me to dismiss.”
Beavan also found that participants in research studies are very clear that the voices they hear are real and distinguishable from thoughts or self-talk. They generally experience the voice as a sensation, coming through the ears. Brain imaging has confirmed that voice hearers do experience a sound as if there were a real person talking to them. Whatever the biological mechanism, it is clear that voice hearers experience a different sensation from thinking.
According to Beavan, most voice hearers can identify some of their voices; they can be people living or dead, gods, spirits or animals, and are often believed to be connected to or sound like someone in the voice hearer’s past or current life. Positive and encouraging voices are often identified as helpers, guides or angels, whereas negative critical voices might be seen as evil spirits. Many of the participants in studies have identified at least one voice as a part of themselves.
Whether a voice has positive or negative things to say, research indicates that there is usually a strong connection between what the voice says and events in the person’s life. An example is hearing a recently deceased partner’s voice or the perpetrator from a childhood trauma.
Sudden vs gradual
It is Lampshire’s experience that an ascent or a decline into madness happens gradually: “I haven’t met anyone who has one day woken up mad … one day they are the filing clerk and the next they are Princess Anastasia of Russia. People might think it is a sudden occurrence but when you explore further, there are connecting links.”
Lampshire is quick to point out that “madness is not a permanent state”. She sees herself as “a well person, who has periods of unwellness”. This sounds similar to the everyday experience of stress being manageable at times and overwhelming at other times. The notion that everyone’s mental health/wellness slides up and down on a continuum can be helpful in that it points to the ability of all of our mental health to change.
How voice hearers understand their voices
Lampshire talks frankly about how she understands her voices: “What I learned very young was that relationships are painful. What the voices did was keep me away from relationships. I couldn’t take any more hurt or rejection. I came to the realisation that they were a protective factor. When I was younger, they were able to protect me quite well, but then their interference and techniques became so extreme and so excluding that they no longer served me.” She likens her voices to an abusive relationship: “They isolate you and tell you only one version of reality, so that you lose the ability to bring in an alternative view.”
Lampshire wishes she had had the opportunity to figure out the meaning of her voices earlier: “If I was able to talk to people about them earlier, I would have realised [their function as a protector] earlier and that’s what we can do now, make it okay to talk.”
This is what part of Lampshire’s role is now. She runs groups within a clinical setting for people who hear voices and is hopeful that things will continue to change in the mental health system: “The idea of using someone who was non-clinical [ie not trained in mental health] but having lived experience to run groups for people who hear voices was rare 10 years ago.”
Lampshire thinks most people who hear voices would have an understanding that their voices are related to stress and stressful events. “If you are a voice hearer then this is how stress manifests itself. Learning how to tolerate high levels of stress rather than avoid, has a huge impact on voices. Learning how to cope is a very individual thing.”
Another voice hearer’s perspective can be found in a fascinating TED talk by Eleanor Longden. Called “The voices in my head”, she eloquently details how the voices started for her:
“I heard a voice calmly observe, ‘she is leaving the room’. The clarity and decisiveness of the comment was unmistakable … This was the beginning. The voice had arrived and the voice persisted … narrating everything I did in the third person…”
She tells of what happened when she told a friend about the voice and referred her to a doctor:
“Fear and mistrust was infectious…the doctor took a grim view of the voices presence. Having been encouraged to see the voice not as an experience but as a symptom, my fear and resistance towards it intensified. Essentially this represented taking an aggressive stance toward my own mind – a kind of psychic civil war – and in turn the number of voices increased and became hostile and menacing.”
Now a psychologist, Eleanor is involved as Lampshire is, in Intervoice, an international organisation for voice hearers that aims to spread positive and hopeful messages about the experience of hearing voices. She is keen to promote hearing voices as a meaningful experience not just a medical symptom.
In talking about the stigma of madness, Lampshire raises an interesting parallel: “Having negative thoughts is normal – most people get that and understand that. But then giving those thoughts a voice, all of a sudden, its madness. For example, if I say, ‘I think I’m a piece of crap’ then we sit down and talk about it, because that’s my self esteem under attack and there are multiple reasons that I might think that. But if I say, ‘the voices have said I’m a piece of crap’, then we call it madness.
In my sessions with people as a psychologist, we often talk of the “voice in our head”, the almost constant chatter of our minds commenting, judging, and labelling our experiences. Many clients who experience anxiety and depression are surprised that other people also have a commentator in their heads. People who experience voices have another, more intense, version of the “voice in our head” but it can be dealt in a similar way. With therapy and appropriate support, we can choose what is helpful to hold onto and how to let the rest be there without responding to it.
What can we do about stigma?
According to Lampshire there needs to be an acknowledgement of the way we talk about people’s experiences: “If you think of it as a disease of the brain of which you are permanently afflicted, how can you impart any hope? Of course you’d be fearful of being like that [hearing voices[, because it’s just a downhill slide.”
She thinks that if people are exposed to conversations about appreciating the different experiences people have had, then a more respectful conversation opens up.
“There is what the voices say and there is my interpretation to what they say,” says Lampshire. “I can’t control what they say, but I can control how I respond and react to it. The option that is available to me is to reinterpret what they say. I can’t ignore them, it’s impossible. I can take the content and rewrap it into something that can be useful. If I can’t make it useful, then I have a choice about whether I take it on board or not.”