Unusual experiences, everyday people

'Psychosis. It's a difficult word to get your head around. It's even harder to think that it might apply to me. But that's the conundrum I face – do I accept it? Do I fight it?'

Every psychology student reads about psychosis – dry textbook descriptions of delusions (strongly held false beliefs that are resistant to change) and hallucinations (perception without sensory stimuli). Some may have a counterculture phase, reading the works of R.D. Laing and others who were amongst the first to argue for meaning within psychosis. Others may come across modern researchers such as Richard Bentall and Daniel Freeman, who advocate for psychological understandings of psychotic experiences. A number will find the hearing voices movement, and the work of Marius Romme suggesting that hearing voices is a common human experience.

None of this prepared me for my own lived experience of psychosis. The delusions were overwhelming – things I knew were true but which nobody would believe. My thinking was muddled, my senses heightened. I wanted to talk about my experiences; the overwhelming truths that others dismissed. Services were supportive and I recovered, but I remember how much I wanted to talk about what was happening and how rarely people would listen.

Having worked in Mental Health for 14 years, I know my experience isn't the exception. Few of my clients receive psychological therapy. Some are afraid to openly discuss their psychotic symptoms with me after previous compulsory hospital admissions. Many lack spaces to talk about their experiences until they access the service I work for. Therefore, in 2015 I was part of a team that set up the Oxfordshire Mind Unusual Experiences Group.

The core of this article represents what I've learnt from facilitating that group. However, we are far from the only group doing this type of work. The International Hearing Voices Movement consists of the diverse conversations, initiatives, groups and individuals around the world that share some core values. Each group is different, but all serve the same aim of helping people who have unusual experiences and/or hear voices. The three case studies alongside this article look in-depth at other organisations doing related work.

'I knew the future – the World had been taken over by highly technologically advanced Aliens who had turned most of the population of the planet into Zombies, if I slept I would become one too, now I knew the truth. By all means, I had to not sleep. This whole scenario was being run by the Devil, I had to find the true Christian underground.'

'I had a Holy family on Earth; we were part of a grand scheme to initiate an all-out nuclear detonation, in which I would press the button to bring into existence, or reveal the spiritual reality behind material existence; which was an illusion anyway.'

People who have unusual beliefs typically hold them strongly, and they can have a big impact on day-to-day life. Who wouldn't be afraid if aliens were turning the population into zombies? And what a feeling of responsibility there must be if you believe you're going to initiate all-out nuclear destruction. Who wouldn't want support to process their feelings about such big events and topics? 

'For me, psychosis means it is like I have a constant conversation in my head, y'know the sort – a load of mean people bitching about someone. That someone is me. And the people in my head want me dead.'

Voices can be distressing, and layers of meaning and interpretation can build upon the voices – particularly if a person is convinced the voices are real. 

'About the biggest help for me has been in finding people who I can share openly with about what I have been through. With people who are open and non-judgemental. People who will listen & allow me to work through things, in a calm way, and be accepted for who I am.'

In our group, we felt it would be a mistake – politically and practically – to use the term 'psychosis'. We wanted individuals with any interpretation of their experiences to feel welcome, including people who disagree with medical interpretations of their experiences. The group's philosophy is to accept beliefs, meeting individuals where they are and allowing them to receive the type of support they want at that point in time.

Pragmatically, arguing about reality gets nowhere except frustration – by accepting beliefs, people have a chance to talk and get a weight off their mind.

I am very aware of different attitudes to unusual experiences – from the medical model to more radical approaches suggesting that unusual beliefs and hearing voices are deeply meaningful experiences rooted in a person's life and history. I am also well versed in coping strategies for unusual experiences, and aware of CBT approaches relevant to psychosis. When working one-to-one with a client I allow these different approaches to influence my practice.

It would be easy to see the group as an opportunity to deploy these techniques in a different setting, and I have observed effective hearing voices groups where this is the approach. However this has the danger of becoming a series of one-to-one interactions between a facilitator and group members. This can work, but risks being a proxy for one-to-one therapy. Instead our group aims to focus on solidarity, mutual support, and – above all else – being a place to talk about difficult experiences and offload whatever is on our members' mind.

We rarely have epiphanies or extended conversations about coping strategies. Instead, people talk about what's going on in their lives. They tell the group about the relentless voices and complain about the distressing unusual beliefs. They have a chance to talk openly with other people who understand and don't judge – in a setting where nobody will simply dismiss their experiences as not real.

As a professional, this can feel uncomfortable. I can notice patterns, or have valuable insights, or be aware of coping strategies that really might help. However, I've learnt that when I try to use these skills, it erodes the equality of the group and takes away from the core strength of bringing people together as equals to talk and share experiences.

I do slip in some questions such as 'what's the evidence for that?' or 'is there an alternative explanation?'. I'll also ask belief-agnostic questions such as 'what do you make of it?' or 'how is that affecting you?'. Reflecting back emotions can work well. For example, 'that sounds frightening' or ' 'what you have described must be difficult'. However, my aim is to speak as little as possible, with the occasional question or comment to keep conversation flowing. Sometimes this doesn't work – and that's okay – but it is always my aspiration.

'Anti-psychotics made me doubt my reality completely and made me worse for the years I was on them. It's difficult, really difficult.'

'All I can say is God bless antipsychotic drugs. They've given me my mind back. Before I started taking them I'd entirely lost all sense of time and chronology; my memory was shot to pieces… Coping mechanisms are great to an extent, but if I can pop one little pill each night to make myself pleasantly normal I see no reason not to.'

Medication is a contentious issue. Some people find it beneficial, but many people don't like the meds – which is entirely human given the side effects some people suffer from. It can feel uncomfortable as a staff member when people talk negatively about medication, and the group starts to draw the 'wrong' conclusion (i.e. if the group starts seeing them as bad, unhelpful, or not worth taking). I've found it important to hold this anxiety instead of act on it. People need to be able to moan about the bad sides of meds. They need to be able to talk about genuine difficulties. In my experience, members voice different opinions that when brought together creates balance.

Medication is also a very politicised issue. If one is pro-meds it says something about your outlook. Being anti-meds is equally communicative. As an individual I have opinions, but as a group facilitator I work hard to make the group unaligned – so that everybody attending feels welcome and discussions flow freely.

This means I am careful not to give an opinion on medication, or to implicitly give an opinion via my style of questioning. Other topics such as hospitalisation, medical professionals, and the mental health system at large can be equally politicised and require careful navigation.

One drawback of being affiliated with a professionalised organisation like Oxfordshire Mind is that there are limits to my political agnosticism. The compromise I strike during discussions of medication which are not self-balancing by members' opinions is to say attendees should speak to a doctor before changing medication. 

'Of course I talk differently when professionals are around. "Us" and "Them" means "Us" and "Them".' (Quote from an individual with lived experience of psychosis)

Professionals have power, even if they don't realise it. In the case of therapy or medicine, professionals have implied expertise. There is an imbalance between the role of the patient and the role of the professional that permeates the mental health system, even if people try to work against it. Even if – as is the case for me – a professional has lived experience, it is the difference between roles that affects group dynamics.

Unlike the groups featured in the case studies, the Oxfordshire Mind Unusual Experiences Group is professional led. The two original facilitators were open about their lived experience.

Staff were present to handle risk – at the request of one facilitator – but took a minimal part in the group. After 18 months, both facilitators had moved on, and we faced the choice of either closing the group or making it professional led. The group still works, but what we gained in reliability we lost in interactivity. I would suggest trying to enable an individual with lived experience to facilitate the group if possible.

'I have the same dreams as anyone else – to be contented, as happy as can be and to live a full and complete life as possible.'

There are many ways to run support groups for individuals with unusual experiences. Each case study highlights a different yet powerful approach. The common thread is giving people space to talk, offload, and make sense of their experiences while receiving support from other people in a similar position. These groups are cost-effective and have the potential to reach individuals who might not engage with typical mental health services. If your area doesn't have one, why not try to set one up?

Tris Smith
[email protected]

Personal accounts of psychosis

The quotes in this article, including the one above and unless otherwise noted, came from the Woking Mind Mental Health Education Pack (Rose & Smith, 2011). This pack, which I co-authored, brought together a diverse range of people who wanted to challenge the stigma of mental health problems. It included over a hundred personal accounts of mental distress, including many by individuals with lived experience of psychosis. The Oxfordshire Mind Unusual Experiences Group is a private space, focused only on supporting people. It seemed better to use the words of campaigners – which were intended to be public – than to use my position as a professional to source quotes from the people I am supporting.

The Open Minds group at The Bridge Collective

I spoke with a co-facilitator who wished to remain anonymous.

What are the aims of the Open Minds group?

The aim is to provide a safe space to discuss the kinds of experiences that people have that get labelled as psychosis. So outside of a medical context, and outside of a service. We don't really think of ourselves as a service… We're not delivering something to people. We're creating safe, kind of democratic spaces, where people can come together and generate their own ideas about their experiences. Where people can share ideas, share tips and things that kind of work – and how – but also just very much a space to be together and alongside each other.

How do you keep the space democratic and equal?

'Traditionally, we would go in, sit down, make sure there was enough milk in the fridge, open the door, put the kettle on, and then let people talk. We don't structure the group. So we don't have an agenda, or we don't even really do a check-in or check-out, we just are a space for allowing those conversations to happen as they happen in real-time. And that kind of works most of the time, sometimes it can be kind of a bit chaotic.

What makes the Open Minds group special?

I don't think we are special, I think we're just doing it in a particular way… there isn't a kind of best way of doing this. There are kind of various groups operating in different ways. We have a particular kind of ethos… It's a happy space, there's usually a lot of laughter in the group; so sometimes very dark humour, but that's quite therapeutic.

How do you handle potentially controversial topics like medication?

I think the important thing is that people get to voice their experience of medication. I've never thought of it as a controversial thing. We don't have a line on medication. We're not pro or anti… it's a space to rant a little bit and get it off your chest.

The National Paranoia Network

I spoke with an expert by experience and National Paranoia Network organiser Peter Bullimore.

What does the National Paranoia Network do?

We run a support group and we also deliver teaching across the world on alternative approaches to work with paranoid and unusual beliefs. In 2019, before Covid, we were in 13 different countries in one year.

Understanding paranoia, and alternative beliefs itself, is outside the medical framework because the medical framework doesn't really understand the concept of what paranoia is, they see it as things like delusions…What they do seem to miss is when you listen to a personal narrative, regardless of how elaborate that story is, there's always – always – a seed of truth. And it's about establishing what that seed of truth is to understand that person's belief system from their perspective.

What happens in a typical group?

People seem to think there's some form of therapy there, but they're not. They're just support and education. People get support from people… people want to be heard. It's a free space where they can talk about things and they're not pre-judged during the meeting.

Have there been any challenges with the network?

There's a misconception in the user movement, that you're gonna change from the outside you're in. You've got to change from the inside as well. So while we're training many, many staff it's changing their attitudes as well.

It was hard to get into services, because they felt we were just coming in to attack them, and say we don't know how to do our job. So I thought, well, let's leave that. Let someone else do that. Let's go in there and look at practical ways of working with people experiencing paranoia and hearing voices so we can work collaboratively.

What is the network's biggest achievement?

Continuing to grow and still being here through some very difficult times and overcoming the initial barriers. [The network reaches 'a couple of thousand' people each year.]

The Spiritual Crisis Network

I spoke with Alan Foulkes (SCN volunteer and joint founder of the Kundalini Collective).

What is a spiritual crisis?

We create a climbing frame of reality through our language and our culture. I would argue there's a wider reality we must create… it's a big garden. Imagine a kid's climbing frame in the garden. We call this climbing frame reality, but there's all this stuff outside, which doesn't come under our language or our culture. And I would say spiritual crisis – or emergency – is when, for whatever reason, people get a glimpse of this reality that's not within this restricted climbing frame.

Now, that can be wonderful; because people can see there's more to life than meets the eye. But it can also be quite disturbing... if you identify with being who you think you are, then you actually find out you're not.

What is a Kundalini awakening?

The body has a number of energy centres… when people are coming to existence, there's a life force… a part of it resides at the Root Chakra… this is what gives us life… [the energy] tends to rise through the body and it can incredibly powerful… and it connects the person to the higher consciousness… it then works to resolve inner trauma… what the energy tends to do is try to put everything in harmony. But that can be really, really difficult… it's become quite common for these experiences to be triggered totally accidentally." 

What does a Kundalini awakening feel like?

'People experience it very differently. So for some people, it can be almost quite gentle. And it can be transformative, over many, many years. For other people – like myself – it's a massive volcanic eruption that blew me off my feet. I saw the whole oneness of existence and stuff, it's quite amazing. But then it became quite traumatic because I had all this energy coming up… it was very difficult for me for a number of months… then I started to realise things have changed, but in a positive way. It's really about this transformation from living, identifying yourself with your thoughts. And with your created self. Moving to understanding actually you're part of something bigger.

I also asked Maria Kayumi (Experiencer and Volunteer), whether there is there anything else I should know?

One of the images that I have of psychosis is an iceberg. So, although I was heavily resistant to using the word psychosis initially, now I'm in a place where I can be, like, okay, well, the tip of the iceberg – the bit that everybody else sees – the bit psychiatrists see, and the CPNs, or whatever – is psychosis. I can't deny that that's there, you know, and that's what they're seeing. And it is because it's there... but what I want, and would be very happy for people to understand, is that huge bit, under the water, is also there. That's what's causing that bit to appear above the top. The Spiritual Crisis Network can help people on both sides, the medical, and the experiencing side, to perhaps come together and have a conversation around that.