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Psychosis and schizophrenia

'I needed to know I wasn't a freak'

Ella Rhodes reports on a new website from Durham's Hearing the Voice project.

10 September 2019

Around one in 10 people in the UK will hear voices others can't, with one in 50 experiencing this on a regular basis. People's experiences of these voices, and feelings towards them, can vary… a new website aims to support all of those who have struggled with the experience.

The site, Understanding Voices, has been produced by Durham University's Wellcome-funded Hearing the Voice project. This has worked closely with voice-hearers, their friends and families, the NHS, mental health charities and academics. It will feature accessible information and resources, including personal experiences, information on therapies and sources of support, and research articles, in an attempt to improve the lives of voice-hearers and raise awareness of hearing voices.

Voice-hearers can include people who have been diagnosed with conditions such as schizophrenia, PTSD, OCD and psychosis, those who have never been diagnosed with a condition, and people who have experienced hearing voices over a single period of time. Understanding Voices, which aims to support people from any one of those groups who may be struggling, is set to be launched today (Wednesday 11 September) in Newcastle upon Tyne.

Dr Angela Woods, Co-Director of the Hearing the Voice project (Durham University) said that voice-hearing experiences differed from person to person. 'Some people feel very overwhelmed, while others find voices to be a valuable part of their life. While Understanding Voices will appeal to everyone interested in voice-hearing, its main aim is helping those who are struggling and looking for ways of understanding and dealing with it. Importantly, the website is based on the real experiences and knowledge of voice-hearers, mental health professionals and researchers, and includes a wide range of ideas and approaches to help people understand and manage voice-hearing.'

The website will also aim to share and celebrate the knowledge of the people who hear voices and who have been involved in its development. Rachel Waddingham, Chair of the Hearing Voices Network (England) and a member of the Understanding Voices Editorial Board, said that when she was first told her voices were hallucinations the foundations of her reality shook. 'I didn't know what to think, what to believe or how to move forwards. The voices intruded on every part of my life and, even with the best will in the world, the professionals in my life really didn't seem to "get it". I took medication to help quieten them, but even then they would return at times of stress and it would feel like we were back at the beginning. My whole family felt lost.'

Waddingham said that the knowledge that others out in the world experienced, and struggled with, the same issues was a big part of her route back. 'I needed to know I wasn't a freak. Information was another key part – the more I understood about my experiences, the more I was able to find a way of navigating them. I began to recognise the difficulties in my life that the voices expressed for me, albeit it very unhelpful ways. What took me years to find, by luck and the kindness of others, is contained in this single website. It's a travel guide, opening up different pathways and ideas that can help people find solace, connection and inspiration. Connecting with the wider survivor, family member and mental health communities – I believe it will be an invaluable resource for voice-hearers, their loved ones and supporters across the world.'

People can access the Understanding Voices website at understandingvoices.com/

Find much more on hearing voices in our archive.