This article is loosely based on a talk I gave at the Hearing Voices Network’s 25 year anniversary conference last week. I was asked to talk about my relationship with HVN and what the network means to me. As the Hearing Voices Network has been a crucial part of my journey, this was something I felt very honoured to do.
I’m not a poster child for HVN or the recovery movement. I don’t see myself as any kind of role model – I’m human, I’m flawed and – in my journey – I’m incredibly stubborn. I didn’t get where I am because of any great personal strength or awesomeness on my part. Equally, as wonderful as the Hearing Voices Network is, it didn’t come dressed as a knight to save me from my personal demons. I didn’t hear the HVN message, go to a group, have a revelation and suddenly make sense of my voices. For me, there was no ‘road to Damascus’ moment, nor a single inspirational turning point that highlights the key to recovery.
My real story, and the story of many others, is much more complex. It’s an ongoing journey – I’m still finding my way through things, putting one foot in front of the other. It’s hard work, but I’m making sense of my experiences and learning how to live my life after years of not believing I had one to live.
The Downward Spiral
For the sake of finding a suitable starting place, this story starts back in 1998 – my first admission to a mental health unit. Having been struggling at university with voices, visions, paranoia and extremes of mood – I remember being glad when a someone finally asked me whether I had any unusual experiences. Desperately hoping that this doctor could do something to save me from what I believed was an alien experiment/government conspiracy, I broke my silence by pouring out all the scary, messy and overwhelming things that were troubling me. I told him about my belief that my sister had tried to poison me last night, the voices that were plaguing me and my conviction that these aliens were messing with my mind as part of an experiment. I remember the doctor reacting very kindly to all this information and saying words that, whilst at the time seemed like a beacon of hope, drew me into years of being stuck within the psychiatric system – ‘It’s OK Rachel, we know what’s wrong with you and we have medication that will help. Come into hospital and we’ll get you started on your treatment’.
Naively, I remember thinking I’d be in hospital for a week or so. In truth, I was admitted for about 8 months. By the end of my first admission I no longer believed in aliens and conspiracies. Instead, I believed I had an illness called schizophrenia. No longer battling the aliens, I became lost – an empty shell. I shuffled around in a medicated state, unsure of whether my reality was really real or not. Worst of all, I lost the one thing that keeps people alive – hope.
Ready To Fall
To understand why I became stuck in the system so early on into my journey, it’s helpful to look back a little to my history. Like many people, I was a victim of abuse in my childhood. like many children who have been abused, I was further traumatised as I grew up into a young woman. As trauma layered on trauma, I was left feeling certain that – underneath my pleasant exterior – I was irrevocably broken. In order to function, to be a ‘normal’ child, I kept these experiences locked up inside. Unsurprisingly, they refused to stay there. As a child I believed I was a monster, a hidden monster that no-one else could see. As a teenager I believed, instead, that I had an alien inside me and that this alien was going to take control of my body and do something terrible. Once again, I felt unable to communicate my beliefs and kept them hidden. Music was my only release. Writing songs and being in a band was probably the saving grace of my youth.
When that kind doctor told me I had a mental illness and that they could help me, no wonder I believed the hype. I not only believed it, but I clung to it. I was primed to believe that there was something fundamentally wrong with me, so their diagnosis only confirmed what I’d believed all along. Moreover, here was an expert who wasn’t recoiling from my evilness – he was actually offering a solution. The challenge was that this solution was a fraud. The medication helped provide respite from the beliefs and the voices that were terrorising me. However, with the cause of the voices and psychosis left unexplored I was doomed to live out cycles of admission, release, relapse and re-admission.
It was against this backdrop of trauma, powerlessness and hopelessness that I found the Hearing Voices Network. I remember the day that I heard about HVN. I had been out of hospital for a few months and was volunteering next to the NSF office (National Schizophrenia Fellowship – now called Rethink). Seeing the ‘schizophrenia’ sign on the door, I decided to introduce myself to them by knocking on the door and saying ‘Hi, my name’s Rachel. I’m a schizophrenic’. Fortunately, much to their credit, the worker didn’t laugh at me or send me away. She invited me in, made up a cuppa and gave me two wonderful gifts. The first was a book by a fantastic woman called Linda Hart (Phone at nine just to say you’re alive) which detailed her experience of being sectioned in a Leicester hospital. The second was a leaflet for my local Hearing Voices Group.
Whilst I literally drank the information in Linda’s book, for the first time really connecting with someone else’s story and realising that I was not alone in all of this, I left the HVN leaflet untouched. After all, as I believed I was ill and already went to Day Centres galore I had little need to sit in a circle and talk with other people about my illness. I assumed that was something the medication would take care of. This changed on the eve of yet another admission. After a beautiful period of silence and calm, the voices came back and the alien began talking to me. I felt sure that I would not survive another hospital admission so, instead, I called the Hearing Voices Group and asked them to help me.
The HVN didn’t work miracles, but what they did do is come and visit me in hospital and invite me to the group when I was allowed to attend. The group was an amazing experience for me, I recognised people’s experiences and – over the next few months – saw evidence that having voices, visions & overwhelming beliefs didn’t necessarily mean my life was over. I remember going with the group to see Ron Coleman speak at a recovery event. Sitting there, in the audience, I watched him keenly as he walked up and down the stage doing his ‘thing’. I could tell he’d been in a similar place to me – but the awesome thing was that he’d got out of that place. He was no longer stuck – better than that, he had a mission. He was using his experiences as expertise, helping others and trying to change the world.
The HVN Travel Brochure – There’s IS a World Out There
Listening to Ron’s story, I felt a small spark inside of me (quickly hidden and disowned). That spark stayed dormant for a while, but once you’ve seen a possibility it’s very hard to truly unsee it. That was the first moment I realised the enormity of the Hearing Voices Approach and what it offered.To me, the Hearing Voices Network was a akin to an exotic travel brochure given to someone who never knew a world existed outside of their small home town. It’s like showing a picture of the Niagara Falls to someone who has only ever lived in flat lands – mind blowing, but in a good way. It opened up possibilities that I had never imagined – of living with my voices, and of truly living. Without this travel brochure, I would still be stuck. After all, why start a journey if you don’t know there’s anywhere out there to travel to.
Knowing other worlds exist isn’t enough to make the hard trek towards them, especially if you are comfortably uncomfortable in your home town. Here, my local Hearing Voices Group was essential – in the group I made connections with other journey makers. I saw people I cared about moving forwards, was encouraged to try new things and had a safe ‘base camp’ to return to every Friday afternoon. This is where my journey picked uthose momentum, as one opportunity led to another. Seeing Ron Cloeman speak led me and my mum to go to a conference in Sheffield by Ron’s company. At this conference I bumped into the lovely people from Network For Change who went on to walk beside me as I moved into my own flat and needed to re-learn how to live in the world. The Hearing Voices Group got me involved in user-led training and Network For Change prodded me into joining PLUS+ their user-led training group. I began to facilitate the Hearing Voices Group and also started a music group at Network’s Day Centre. My keyworker encouraged me to become a trustee for a charity supporting survivors of abuse and, to my surprise, I ended up as its chair. After performing at a World Mental Health gig, I got the confidence to get back into my music and even ended up studying at mainstream music college – my first non-mental health activity in years.
Walking The Walk
HVN helped me to flexibly hold multiple roles – member, facilitator, supporter, supported, client, service provider, trainer, musician, voice-hearer, survivor and friend. I still believed I was – at the heart of it – unwell, but I was open to being proved wrong. It gave me the courage (some would say foolhardiness) apply to the post of London Hearing Voices Project Manager in 2007 – and helped me get a diverse enough skill set to get, and keep, the job.
Working within the Hearing Voices Network brought with it new challenges. I was training people on how voice-hearing does not have to lead to illness, whilst simultaneously still believing that I was the exception to the rule. My childhood trauma, compounded by psychiatry’s biological understanding of me, meant that I clung to the notion that I was ill far after it had outlived its usefulness. I believed I was the exception to the rule – the only truly ill person in the hearing voices movement. I believed there was something deeply wrong with me.
Working in the network also gave won fantastic opportunities to meet, and chat with, some truly inspirational people. Ron, Jacqui, Pete, Eleanor, Rufus and a multitude of voice hearers from across the globe. It was these people, and the work of Jo Moncreif, that helped me to question whether I needed medication to numb my voices and beliefs. I slowly began to withdraw from the meds, safely building in extra coping strategies as the neuroleptic fog lifted to reveal the extent of my underlying distress.
Coming off meds was relatively simple, the true challenge for me was living without them. Without the meds, my number of voices increased and I had no buffer between me and my distress. With little support from the mental health system, I had to seek out my own support and battle their idea of me as a ‘timebomb’ or ‘non-compliant’. Still, in amongst the confusion and chaos I began to question the one thing that had held me back. I began to question the belief that I had schizophrenia/schizo-affective disorder and that I was enduringly ill. I finally came to see myself as a creative survivor of trauma who, as a child, managed to instinctively use dissociation to bear the unbearable. I started to see even my difficult voices as part of this survival, and build relationships with them in an attempt to work together.
A Final Thought
As I said before, I’m no role model. My journey was even more complex and confusing that I have described – and I’ve had to recognise my own part in it without painting myself as a hero or a villain. It’s an ongoing journey, and one that I would rather the young people I work with do not follow. I hope that they will follow a shorter, and less painful, route – sidestepping the years of illness and disability that I no longer believe are part and parcel of hearing distressing voices.
Hearing Voices Groups, Hearing Voices Networks and the International Hearing Voices Movement have been central to my story. The power of this approach is that it’s essential human and full of common sense. Biological psychiatry complicates and dehumanises things. Rather than impose a single model of voice-hearing on it’s members, the Hearing Voices Approach encourages people to find their own truths. It’s a rare and awesome thing where people who have very different frameworks of understanding (trauma-based, spiritual, technological, psychological, medical and cultural – to name but a few) stand side by side to offer mutual support and understanding. Our difference and diversity is one of our greatest strengths.
Back when I was stuck within the system, there was a time when my family thought that it would be kinder if I was no longer alive. Things really were that hopeless. HVN, and the amazing people and organisations I have met along the way, have not saved my life. They’ve done something far more powerful and long lasting than that – they’ve helped me recognise that I have a life worth saving and given me the inspiration to find out how I can begin to live.