Real lives, real experiences, real wisdom

There is such an untapped wealth of knowledge and wisdom that comes from people’s personal experiences of finding their way through life.

Integrated Voices (its current working title) is a website being developed by Hearing the Voice in Durham and when I first heard about the plan to create this online resource, I got really and properly excited.

I don’t often get really and properly excited. I’m not an excitable person – I am more of a reflective and calm (outwardly anyway) kind of person.

When I do get excited, several of the voices I hear will start commenting on my thoughts and feelings. Especially one voice will get very active, telling me all the reasons why getting excited about anything is a bad idea. I am pretty sure she sees herself as ‘the voice of reason’ but I just find myself feeling more anxious when she comes along. I don’t like feeling anxious. She thinks a bit of anxiety is healthy and will keep me safe. We have debates about this, her and I, in my mind.

As far back as I can remember I have heard and sensed things that other people don’t. Invisible beings – both friendly and scary, critical voices in my mind, disembodied voices from my environment, repetitive voices, loud voices, supportive voices, annoying voices, presences using non-verbal communication and many more experiences like this.

When I was about 8 I realised that not everyone has these experiences and for the following 15 years I tried to figure out what was going on for me. And I was trying to figure it out on my own.

Back then the internet was just in its infancy, so most information came through books. I ended up reading books on spirituality, psychology and psychiatry without finding much that seemed useful to me. Eventually I started reaching out for help from others and in 2005 I joined a project in Aarhus (Denmark) for people who had experiences similar to mine.

It was such a relief to find a community.

Connecting with others, sharing stories, ideas and strategies and getting creative together about ways to cope when things were difficult. Sharing difficulties and joys, supporting each other and witnessing each other’s journeys. It was a new experience for me because I was used to feeling like a bit of an alien and on the outside of things going on around me.

Being part of the project fired up a passion in me for destigmatising experiences often seen as ‘abnormal’ or ‘psychotic’ such as hearing or sensing things that others don’t.

I know that I was lucky to find community and information that was useful to me. I have heard many people talk about how difficult it is to find information that feels relevant to their personal situation.

Even though the internet has come out of its infancy and is now bursting with all sorts of information, it is striking that there still isn’t a website such as the one Hearing the Voice is aiming to develop. There are particularly two things that got me wanting to get involved; the team at Hearing the Voice is looking for diverse experiences and they are wanting to make the website as engaging and accessible as possible.

We believe that it is important that this section of the website is developed by people with personal experience of hearing voices and includes a variety of different perspectives and experiences. We want the website to reach out to as many people as possible, to feel accessible, engaging and ‘real’, and to showcase knowledge gained through lived experience, alongside that which comes from research.

Hearing the Voice

From now and until May 4th I will be trying to collect as many stories, quotes and ideas about coping as possible. These contributions will help shape the Integrated Voices website and hopefully make it feel relevant to a diverse range of people looking for information.

I am getting support from my partner Rufus and help from the team at Hearing the Voice to do this work – and so far I am quite enjoying myself.

To contribute

I am aware that calling it ‘hearing voices’ doesn’t resonate with everyone. We would love to hear from people who have experiences such as djinns, spirit guides, schizophrenia, auditory hallucinations, persecution, electronic harassment, intrusive thoughts, thought transmissions, inner voices, ancestors and invisible presences.

If you are reading this and you have personal experience of hearing and sensing things that others don’t, please consider if you want to contribute in one way or another.

If you are supporting someone who hears or senses things it would be great if you could make them aware of this project and find out if they want to contribute.

There is also a questionnaire for family, friends and supporters which you can find HERE.

Online questionnaire

We have launched an online questionnaire. It consists of about 10 open ended questions about everyday life with experiences such as voices, coping with these experiences and talking about them with others.

Go to questionnaires HERE

If you prefer a word document or paper version of the questionnaire you can contact me to arrange this.

Focus groups

We will be facilitating two focus group sessions – one in Manchester on Friday May 4th and one in London on Thursday May 3rd see more HERE

Interviews

If you would like to share your experiences and ideas about coping in a 1 to 1 interview you are welcome to get in touch. We might be able to meet to do the interview depending on where you live but we could also do it over the phone. We would like to audio record interviews to make sure we don’t miss anything or misunderstand. Any material we collect will be kept securely and won’t be shared with anyone without your permission.

If you are interested or have any questions about interviews, please contact me by email openmindedtraining@gmail.com

Visiting Hearing Voices groups

I am arranging to visit different Hearing Voices Groups in the UK to have informal sessions where people can share their knowledge and stories. If you are a member or a facilitator of a group and you want to contribute you are welcome to get in touch and we can look at different possibilities.

Deadline for participating will be May 4th

Contact me by email openmindedtraining@gmail.com or phone 07926685432

 

Information about Integrated Voices and Hearing the Voice

Hearing the Voice is currently working with members of the voice-hearing community to develop Integrated Voices – a new online resource that will help people find clear, balanced and comprehensive information about hearing and experiencing things that could be understood as ‘voices’.

The hope is that Integrated Voices will make it easier for people to find information about different approaches to hearing voices and ways of supporting those who are struggling with the voices they hear.

The website will have 3 key sections:

  • Understanding Voices
  • Living with Voices
  • Working with Voices

Each section will have modules linking to a variety of resources, multi-media, freely accessible research articles, personal narratives, reviews of the evidence base for specific therapies and (where appropriate) sources of support.

Hearing the Voice (HtV) is an eight-year multidisciplinary research project based in Durham, UK.

It combines insights from the humanities and sciences to provide a better understanding of the experience of hearing voices.

The project is funded by a Wellcome Trust Collaborative Award in Humanities and Social Sciences until 2020.

More information about Hearing the Voice: www.hearingthevoice.org

Connecting the past and the present

This week my partner Rufus and I went down to London to facilitate two separate workshops together with our friend Anders. First day we looked at Using Mindfulness with Psychosis and second day we shared different ways of Talking with Voices and learning from the dialogue.

Anders came over to England from Denmark and it was quite special for me personally, to try and bring together two equally important worlds.

In recent months I have started to feel like I am finally settling into my present life with Rufus in England . Moving to a new country has been challenging and exhausting and I have wondered what I might end up doing with my time and whether I’d ever feel valued here the way I do in Denmark.

I have been very consious of not losing my connections to my previous life in Denmark, my friends and my family – and it has been a painful juggling act at times. It is tempting to just focus completely on the here and now; on adjusting, finding new networks and on building a future. But my sense of self is deeply rooted in my past – in those first 32 years in Denmark, in the people who know me well and value me for how I am and not just for what I do.

Since moving to England I have been travelling to Denmark regularly but it often feels disjointed. Here in England certain parts of me have become stronger and when I am in Denmark I experience other parts of me strengthening or I feel myself going back to how I was several years ago. My hope is that in time – and as friends visit me here and Rufus comes with me to Denmark -the sense of jumping between selves and worlds will ease.

The last ten years I lived in Denmark I was involved in the Hearing Voices Project in Aarhus ; participating in a Hearing Voices group, delivering training as part of a team (quite often with Anders) and making new friends. I found that I was able to do things I hadn’t considered as part of my path in life when I was younger: public speaking, teaching, openly sharing my vulnerability with others, support people to set up groups. I have gained so much knowledge and experience doing this work and it looks like I will be able to build on this here in England.

Delivering training with Rufus and Anders was emotional and affirming for me –  obviously it is amazing to be able to do things together with people you respect and care about. But each of them also represent significant changes and times in my life.

As always, delivering training is exciting but also presents some challenges and I find that I always learn something new – about myself, about the material we are working and about working together as a team.

We were all exhausted by the end of Tuesday – and rush hour commuting in different parts of London does add an extra layer  to the predictable tiredness.
I thoroughly enjoyed the two days and there is a sense of inspiration and possibility here in the post-training days.

Much gratitude goes out to everyone who came along and co-created the training. I truly believe that everyone in the room creates what happens: each person brings their own energy and whether people speak up or keep quiet, engange with others in the breaks or not – it all makes the day unfold just the way it does.

Video

The Hearing Voices Approach

Destigmatising and demystifying the experience of hearing voices is something I feel very passionate about. I myself have always heard voices and I was lucky enough to have a family that did not think it was unusual or problematic. My mother is avid about not correcting children’s experiences or imposing ‘reality’ on them, so I was allowed to enjoy my invisible friends and talk to spirits of nature, gnomes, elves, fairies and trolls.

But eventually I was confronted with ideas of normalcy and what kind of experiences are acceptable to talk about – and what not to talk about. I was around 8 years old when I started realising that not everybody has these experiences. And as I tried to fit in more, be more normal and push away the things that seemed to set me apart from others – my sensitivity and the voices and beings I could sense – I began to loose the sense of meaning and magic.

My life with voices is a long  story that I won’t share here and now. A short version is in the book “Living with Voices: 50 Stories of Recovery” by Romme&Escher. But the essence of my journey has been the realisation that I need meaning and magic to counterbalance the pain and overwhelm of being in this world. Being sensitive and sensing things that others don’t, are both parts of what makes life worthwhile. And I need people who not only accept my experiences but actually are curious about them and help me find ways to express my inner world.

It was through relationships with other people that I began to find a language for my emotions, my fears and shame. I found out what it means, how it really feels, to feel safe. I found out what belonging tastes, smells and sounds like. And I started looking for and creating spaces, where I could experience safety and belonging.

One of the people who has walked along side me on my journey is Trevor Eyles. For more than 10 years he has worked to promote the Hearing Voices approach in Denmark and the rest of the world. He has supported both mental health workers and people who hear voices (and voices) to find ways to work together and change people’s relationship with the voices. He cares deeply about this work and he has helped set up numerous Hearing Voices groups. He has been a great mentor for me and many of my values around collaborative approaches to mental health are founded in working with him.

The interview below is a good and grounded introduction to the Hearing Voices approach. Tools that I have found helpful in working with voices are: Non-Violent communication, Mindfulness, Body Awareness Therapy, Voice Dialogue and the Maastricht Interview. Many good resources can be found on InterVoice’s website.