Challenging the stigma for people who hear voices in their heads

Traditionally associated with serious mental illness, perceptions are changing for people who hear voices, writes James Fogarty.    

Next week, on Friday, April 17, the support group, Hearing Voices Network Ireland (HVNI), will hold its national launch at Trinity College Dublin.

Affiliated with the international group Intervoice, the HVNI is part of a growing movement, challenging the stigma around voice hearing. While traditionally associated with schizophrenia and psychosis, many voice hearers are now refusing to live under the label of mental ill health. They are finding wisdom and comfort in the voices they hear, and are encouraging others to do the same.

“There are very many people who hear voices, and many of them do not fulfil the criteria for schizophrenia or any mental illness,” says Prof Brendan Kelly, Associate Clinical Professor of Psychiatry at UCD and author of numerous books on mental health. He explains that approximately 2.5 per cent of the population routinely hears voices, not the voice of their conscience or their thoughts, but a separate voice “as clear as mine or yours”.

READ MORE: From shouts to whispers hearing voices is not uncommon .

While this percentage may be higher due to underreporting, he repeats that “hearing voices is not indicative of major mental illness”. However for those experiencing psychosis early intervention is key, and the HSE’s Detect Programme is already working in this area, Prof Kelly adds.

William Lynam is a mental health service user, diagnosed with schizoaffective disorder. “Paranoia is my major problem,” he explains, adding that this symptom has been stabilised by medication. It is his belief that the network helps both patients and healthcare professionals. “It gets people talking about the illness. We are realising a lot of gifted people hear voices... I would recommend people who may be experiencing voice hearing to go to the support groups,” he says. “Talking about your experiences and becoming part of a group teaches people to respond rather than simply react. “And that’s so important for recovery.”

Nicola Hynds, who was diagnosed with schizophrenia, is an ambassador for Seechange, the National Mental Health Stigma Reduction Programme. For her the road to recovery meant challenging stigma head on.

“Stigma has delayed my recovery many times. I am okay with having a psychotic illness, but sometimes other people’s ignorance can change that,” she says. “When I hear someone describe schizophrenia as a multiple personality disorder or use the word ‘schizo’, it takes away a little bit of the resilience and self-acceptance I have worked so hard to build up.”

Nicola believes that while this prejudice is being eroded, much remains to be done.

“While I do not think the stigma is disappearing, I feel that it is lessening with each brave person’s decision to speak out or look for help.”

Inspirational TED talk doctor of psychology, Eleanor Longden, who is from the UK, has become in many ways a figure head for the Hearing Voices Movement. In 2013 she gave a deeply honest and inspirational TED talk, where she discussed her own challenges with voice hearing and mental distress.

During the talk she revealed that while at university, as she was leaving an empty room, a voice spoke to her. Initially, in a neutral calm manner, it began to recount her everyday actions, ‘she is leaving the building’, ‘she is opening a door’.

It was only after visiting a GP and receiving a diagnosis of schizophrenia from a psychiatrist, though, that the experiences became profoundly negative. Hospitalised and medicated, Dr Longden has described this struggle as a psychic civil war where 12 hostile voices assailed her. However, thanks to the support of her family and healthcare professionals, this war is over. The voices have not disappeared, they now work in harmony with her.

“That level of conflict and misunderstanding is long in the past,” says Dr Longden. “I would certainly miss the voices if they went. They are a very important, intrinsic part of my life and my identity.

“I feel very proud to be a voice hearer.”

Traditional thinking in psychiatry is at odds with this assessment and she is often asked if the ‘medicalisation’ of the voice became another trauma?

The answer to that question is complicated, Dr Longden explains. “Because as a child and a young adult I had already experienced considerable trauma, which had consequences that needed to be healed and understood, it is probably likely that I would have experienced suffering regardless. But the medicalisation, and consequent isolation I experienced, made it much more complicated than it needed to be.”

Like others, she has come to consider her voices as a psychological mirror, reflecting her concerns and stresses.

“I do still hear voices and they can be troubling. But if that happens it would definitely be an indication that there are things going on in my life that the voices are responding to. And if the voices were more invasive or distressed or more active than usual, then I have to try and make sense of that.

“So it feels like a process of communication and collaboration between myself and the voices. A partnership really.”

This idea of working in partnership with the voices is central to the Hearing Voices Movement, a development she believes is positive.

“I think it’s very positive but I have always been resistant to ‘romanticising’ voice hearing. I think it’s important to acknowledge how incredibly distressing and demoralising it can be for people. But what I would say is it is an experience that can be interpreted, deciphered and made sense of.

READ MORE: Hearing Voices Network to help people who hear voices .

“When the voices are very distressing, it’s usually a sign that something overwhelming has happened to the person, and we need to find out what has happened to make the voices manifest in this way. The voices can provide opportunities for insight into life and its conflicts, but also for learning and growth, which may be a very difficult process.

“But to just treat it as an aberrant symptom of schizophrenia and mental illness, in the same way that you would approach something like a headache or a stomach ache, is very unhelpful for very many people,” she believes, adding that for a significant number medication, solely, is not going to promote genuine long term recovery.

To achieve this, tackling the underlying causes is essential, and this is something she stresses to healthcare professionals.

In Ireland Brian Hartnett has done much to challenge the stigma around voice hearing, setting up Hearing Voices Ireland in 2006.

“It’s so common, anyone can hear them and it doesn’t have to be seen in terms of a mental illness,” Brian says. “Children from a young age will have imaginary friends and conversations, but as we get older we are conditioned not to behave like that. But some people never stop hearing voices.

“It’s important to note for some people this is not a problem; it can be a positive thing. For me my voice hearing is a positive, supportive experience, I wouldn’t want it to stop. But it wasn’t always like that; I did go through a period where it was negative.”

While for Brian the voices were always with him, “the volume was turned up” following experimentation with drugs in the 1980s and early 1990s while in London. He received a diagnosis of drug induced schizophrenia shortly after returning to Ireland in 1996.

“I do take a small bit of medication now which I feel helps keep me grounded, but I also feel there’s a psychological aspect to the voices. When I was in a less healthy psychological state, the voices became negative. When relaxed and stress free, I find them comforting and helpful.”

For mental healthcare professionals, growing patient confidence is helping to set the agenda for treatment.

Dr Pat Bracken, Consultant Psychiatrist and Clinical Director of the West Cork Mental Health Service, has been working in the field of psychiatry for 30 years. When asked whether talk therapy and medications should be used in concert, Dr Bracken is emphatic. “Absolutely. Medication is undoubtedly important, even life-saving, for very many patients. But, it has its limitations and there are often serious side effects. We need to be careful not to see medication as the only answer for any sort of mental health problem, including very serious problems such as schizophrenia.

“In saying this, I think I am in the mainstream and at one with most psychiatrists and mental health stakeholders. It’s also important to remember that what will work for one person won’t necessarily work for everyone. In mental health work, it’s very rarely as simple as saying ‘we’re dealing with illness X and so the treatment is A and B’, as it might be in other parts of medicine.”

In fact taking a narrow medical approach can shut down treatment options, he believes. This shift is part of a general change in psychiatry and mental health more widely, he explains, called the Recovery Movement. This approach to care seeks to emphasise the expectation for recovery from mental ill health, and calls for the patient to be offered the chance to take a greater role in decisions about their treatment.

“What’s happened in recent years is that patients of mental health services have become more organised, and many of them are very critical of the way things have been carried out so far,” he explains. “They have argued that we need to think very differently about mental health problems. They tell us that we need to think ‘beyond the medical model’ and to see mental health problems as more than just problems of the brain. That’s not at all to belittle or question the seriousness of mental health problems but to make the point that the mind is not simply another organ of the body and mental illnesses are more complex than bodily diseases.”

When asked about new pharmacological advances in the treatment of schizophrenia, Dr Bracken believes progress has been minimal. “In addition there’s increasing concern about the long term effects of anti-psychotics, and we as doctors have to have a more nuanced approach to prescribing these medications,” he explains. “Some people don’t respond to anti-psychotics at all. And in these cases, one has to work in different ways to bring support and help to such people. Other times they may have a partial response; the drugs dampen down the psychotic experience, whether that be hearing voices or experiencing delusions, but they don’t make these experiences go away entirely.

“These drugs are often helpful but they are far from curative.”

For Dr Longden her message to people experiencing voice hearing is simple — you are not alone.

“It’s important to remember that hearing voices is a very common human experience. It’s been documented for as long as there has been human history, in ancient civilisations, in religious texts — notable historical figures have heard voices. And we should not immediately think of it as a sign of insanity or something to be ashamed of.

“And also to bear in mind, while voices can be very distressing, with support it is perfectly possible to learn to live happily and peacefully with them.”

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