Hi, my name’s Rai (pronounced Ray, in case you’re interested). After being labelled with a variety of mental health problems and having to deal with the stigma associated them (including schizophrenia and DID), I am now lucky enough to work in mental health trying to change things for the better. This site combines some of my thoughts and ideas with the work that I’m currently engaged in.
So, pull up a chair, get comfortable and let the stresses of the day fade into the background. This is a space for hope, understanding and – most importantly – for seeing behind the label.
As a starting point, here’s a little taste of my story. It’s not comprehensive (fitting my life into a single page is no mean feat), but it might help put the rest of the site into context.
The Early Years:
I grew up in Leicestershire, with my wonderful family. Unfortunately life outside of the family wasn’t always easy, and I went through more than a few traumas whilst growing up. Being an independent soul, I told no-one until I finally broke down and ended up in hospital aged 20.
Aged 7, I remember looking into the mirror and seeing a monster look back at me. I was convinced that monster was me. By the age of 14 I was sure I had an alien inside of me and was terrified of what it would do. Throughout all of this I kept silent. It was this silence that stopped me from finding my voice and finding a way of dealing with what had happened to me. It was this silence that needed to be broken.
The Hospital Years:
After going officially ‘crazy’ at university, I finally ended up in a psychiatric unit in 1998. By that point I was trapped inside a confusing world of alien conspiracies, paranoia, voices and traumatic flashbacks. Given the terror I felt at my realities, I was actually glad to be given the label ‘schizophrenia’.
No label properly describes human experience, though, and throughout the next five years doctors made valiant (but futile) attempts at finding one that fitted. I went through a range of diagnoses – including schizoaffective disorder, Dissociative Identity Disorder and Complex PTSD – before being diagnosed once again with schizophrenia (a diagnosis my doctor still believes I wear).
My time in ‘the system’ almost broke me. I lost my confidence, self esteem and – most importantly – hope for the future. I became a shell and those around me thought that I would never recover.
Breakthrough:
After years of going in and out of hospital, I was lucky enough to find out about my local Hearing Voices Group. Through this group, I began to rebuild my self esteem and untangle the voices and beliefs that plagued me. Hearing the groundbreaking work of the Hearing Voices Network, I started to realise that my voices were my way of making sense of what had happened to me. I began to see a life outside the mental health system and – with invaluable practical and emotional support – began to find it.
As Things Are Now:
After a rocky few years trying to relearn how to live independently again, and a few more years building up my skills and confidence as a volunteer, in August 2007 I made a brave – if potentially foolish – leap into the world of work. I got a job for a London charity as the manager of a project developing peer support groups for voice-hearers across the capital. This job was seriously amazing. I had the opportunity to develop new initiatives (including Voice Collective young people’s hearing voices project and the London Hearing Voices in Prisons Project) and work with a committed team. In early 2015 I made the difficult choice to leave this wonderful project and focus my energies on my freelance work. I am now lucky enough to do what I love in the UK and abroad.
I have the support of my husband (Joel), my family, my friends and my colleagues. I’m no longer on my own. I’m part of an international movement of change to challenge the stigma, misunderstanding and oppression of people who are struggling to cope with their unusual experiences. I don’t have all the answers, and am still working out how to deal with some of my own issues, but I’m on the path.
As a child my life was, in part, controlled by the trauma I felt unable to talk about. In my 20s my life was controlled by the mental health system and the labels I wore. It was only in my 30s that I finally understood what it means to live the life you choose. It was only then that I felt I actually have a choice.
So, in part this blog is about how I’m starting to make sense of this life I’ve found that I have. As well as sharing some of my own story, I want to use it to share ideas and information from around the world. There is so much fantastic work and progress happening internationally, I hope that hearing about it might help inspire and re-energise you in some way.
Thanks for listening x
Hey Rai, really enjoyed the lecture you gave in Perth on the 18th, you inspired a lot of people there, thanks again!
Hi Pat, Thanks for the lovely feedback. It was great to link up with so many people in WA who are committed to supporting young people in distress π
This is complete bullshit. People with actual schizoeffective/schizophrenia don’t get the disease at seven and fourteen years old. So the whole “seeing a monster in a mirror” and “believing an alien is inside you”–is bullshit. It has been scientifically PROVEN that schizoform disorders don’t appear until later in life. When you post bullshit like this, you reinforce stigma on people who actually HAVE the disorder. Shame on you. Refer to the website I listed. These are people who actually struggle with real mental illness.
I’ve been debating whether to approve this comment or not. I get to choose (it’s my site, so I don’t owe anyone anything). It’s been a while since I’ve been called names for being public about my experiences … it used to happen a lot, though. I remember someone with an issue with people who self harm emailing me and calling me some very horrible names. After a conference in the US someone accused me of being a potential murderer (I mean … we’re all potential murderers, I suppose … but that’s not the point they were trying to make). I always wonder, when I get a message like this, what’s going on here? Mary – I have no idea what you have taken from what you have read about my story … or why it is that it has left you feeling that it’s OK to make such judgements about me. I am sorry if you are hurting, though.
In terms of my experiences, my current diagnosis is schizophrenia – although I do not agree with it and I do not, for myself, find diagnoses or the concept of mental illness a helpful way of understanding what I have been though (and continue to go through). However, those who do believe in the concept of schizophrenia may take issue with the ideas you’ve shared here – it hasn’t been scientifically proven that the issues that end up getting collated under the schizophrenia umbrella happen in later life. There is a lot of research around the prevalence of voices, visions and unusual beliefs in childhood and adolescence. Most of those with voices/visions in childhood will not get a diagnosis of psychosis, or go on to be diagnosed with schizophrenia. But some do. I am not sure where you are getting your information, but I can share links to papers if you’d like to look up some of what I’m saying here.
My experiences are my own. You don’t have to believe me – thankfully I don’t need that from you as I have enough confidence in myself these days to withstand those who can be mean on the internet. Yet, I would hope that whoever reads this thinks twice about leaving messages like this on people’s blogs. Sure, it might make you feel better in the short term … but when you move away from it on to the next thing, the person who you are being unkind to sees your words and has to find a way of making sense of them. They can leave very deep marks.
I do definitely recommend the Fireweed Collective (the link you shared). The Icarus Project was one of the shining lights that inspired me when I was stuck in my room in my early 20s … the idea that my experiences might have value and could be accepted somewhere. I found it around the same time as I came upon the Hearing Voices Network. If this post helps interest people in what they offer, then that is definitely something.
Hi Rachel
I attended your hearing voices groups in prisons talk at Durham University last night and was definately inspired by you and your story and made me want to know more about you. Thank you for sharing your story on your website,it has given me an insight into your recovery journey.
Joanne
Thanks Joanne, it’s great to hear that you took the time to look at my site. I hope we will be able to support some Hearing Voices Groups in Prisons work up in the North in the new year.
Hi my name is Fran Armentrout, I suffer with hearing voices and also have PTSD, borderline Personality . I would like to attend a group on hearing voices. I live in Massachusetts ,USA . I also live in a supported housing and have staff 24 hours a day. I go to peer support and we also have a group called Illness Management and Recovery. It teaches us coping skills and also how to deal with stigma . I would be very interested in hearing from you on other coping skills. Especially in how to deal with hearing voices. Sincerely, Fran Armentrout
Hi Fran. Lovely to hear from you π I met some lovely people in Mass. recently – I went over to do some workshops on voice-hearing. There is a really vibrant Hearing Voices Movement over there, and a group at the http://www.westernmassrlc.org . If you’re not near Western Mass., check out http://www.hearingvoicesusa.org for a list of other groups in the area.
Coping with voices, especially distressing voices, can be really tough – but I’ve picked up a few ways that work for me along the way. I’ll try and blog about them in the coming weeks.
Hey Rai just read your story that in many ways reflects my own. I live in a town a few hours out of Perth WA I’m now in the process of starting up a HV group hear in rural west Australia.
Your story is really inspiring and it is People like yourself and others around the world that has incouraged me on my journey
Joanne
Hi Rai after reading your story and following you on twitter thought it would be good to contact you. Your story has some similar aspects of my own. I live in Busselton western Australia a few hours drive from Perth and are in the process of starting up a HV group something a few years back I could not imagine. But thanks to some excellent support from HVNWA and Richmond Fellowship it now seems a real possibility. Your story really inspired me along with others in the Hearing Voices movement.
Thank you Joanne Newman
Thanks Joanne, it’s great to hear from you. I remember visiting Busselton a couple of years ago when I did some work with the guys at HVNWA and RFWA. It’s great to hear that you’re launching a group there – wonderful stuff. Much warmth and solidarity π
Hi,
are you familiar with the work of Debbie Ford? If you’re not it will greatly help you to understand the true nature of those inner voices and their aggenda. I really believe that everybody is hearing voices – only that some of us choose to ignore them.
Here is a great book by Debbie Ford: The Dark Side of the Lightchasers.
http://www.amazon.com/Dark-Side-Light-Chasers/dp/1594485259/ref=asap_bc?ie=UTF8
Hi Dan, thanks for getting in touch and sharing your perspective. I’ve had a quick look at this link and it looks interesting. I’m curious, though, as to why you feel you need to tell me to seek the real nature of my inner voices and their agenda. If you look around this site I hope you’ll see that I have a way of making sense of my voices that is working well for me. I live a good life, and feel in a good place. Whilst I’m open to different perspectives, and know that the sense I make of my experiences will change as I learn more, I’m doubtful that any perspective will give the any ultimate ‘truth’. That doesn’t sit well with my lived experience that there are many truths … Still, thank you for getting in touch. I wish you well
Hi Rai,
You and your work are very intriguing to me. I am a school counselor who is studying and practicing mindfulness. Some of what you are doing to help with hearing voices sounds a lot like mindfulness. Do you have such a practice? Thank you for sharing your work. I hope to share it with people at work and with family members who struggle with mood issues.
Joanne
Thanks Joanne. There are definite overlaps with mindfulness, and although I don’t practice it as such I am influenced by it and consider it an allied approach. I’m especially in tune with their approach of welcoming difficult experiences and being curious about them, rather than pushing them away. That is something I work to do with the voices I hear, and other experiences that I have. I’m also keen to make sense of my experience and my relationship with them – which goes beyond Mindfulness itself, I think, but that’s just icing on the cake. The core is being with experiences, I think.
Congrats on your strength and willingness to share. I came across your site via a post on ‘disinformation’.
My wife has DID, one of the worst ones for stigma, as you mentioned. We’ve been fortunate in that we haven’t gotten any grief about it. She’s quite open and is accepted by everyone she meets, including our families.
The description of your voices in the article sounds a lot like what my wife hears/lives.
Keep up the good work.
Thank you π I’m really glad that your wife has a good network around her and can be open about her experiences. Best wishes, Rai
Dear Rai
My sister has so called schizo affective disorder/ schizophrenia i don’t know what the final label was. she hears a lot of different voices some of which are very cruel and mean and tell her frightening things that make her very lonely and isolated. she lives in leeds in the uk. i think she might benefit from meet / speaking to people who have similar expeirences to the life she lives. but she finds it very hard to reach uot to others becauyse of bad experiences of exploitation and the “system”. i would love so much to help her…. is there a hearing voices group in leeds? any contact in leeds who could make contact with her. she has no friends or contacts and lives alone.
sorry for this very long message.
Hi Ruth, Thanks for getting in touch. I’m really happy to be able to point you in the direction of Leeds Survivor Led Crisis House’s Hearing Voices Group (see: http://www.hearing-voices.org/groups/leeds-survivor-led/). It runs on Wednesday lunchtimes, so if you get in touch with them they may be able to help. I know that I found it so helpful to find others to talk to, but it took me a while to feel it was OK to speak about my experience … but knowing that others felt able to talk about it was so helpful. Groups aren’t for everyone, though, so you might also want to point her in the direction of videos and written information by people who also hear voices. There are some videos on my site (‘Short Thoughts‘), but you can also find some other video resources on the HVN England site.
Good luck!
thanks very much for the link to leeds HVG i’ll try to contact them
My daughter who is in her early 20’s has recently had her first psychycotic episode. It’s over a month ago now and she has not recovered and is hearing voices telling her she is God and Satan and other bizarre things. She is in hospital and has been put on anti psychotic meds
Hi Nicolette. I’m sorry to hear your daughter is struggling with such intense experiences. I remember my parents really imagined that once I went into hospital we would have an answer and that things would get better … but my path was a bit more complex than this. Does your daughter have anyone she can talk to in hospital – these experiences can be so overwhelming that finding some space to offload without anyone judging whether they are ‘sane’ or ‘not’ can be so helpful. I think I just needed people to hear me, early on. I don’t know if it’s helpful, but I often recommend parents/family members check out ‘Living With Voices: 50 Stories of Recovery’ – a book that shares many different ways people have found a way through challenges voices and intense experiences. Intervoice’s ‘practical guide to coping with voices‘ can be helpful too – if you’re wanting some reading that helps you begin to make sense of things. I wish you and your daughter the very best
Hi Rai,
I wanted to say thank you for a wonderful presentation at the UPCA psychotherapy conference yesterday. For me it was the most thought provoking part of the day & I’m grateful to you for the insights you shared. I only recently qualified and have a lot to learn about the topics you discussed, and I was interested to read more about your work on your website.
Femke
Hi Femke, That you – I’m really glad to hear that my presentation had an impact. It was great to link with therapists (in training and practice) who are keen to critically reflect on, and improve, the profession. I hope that this inspires you to keep thinking about voice-hearing and things that could be labelled ‘psychosis’. Best wishes, Rai
My Golly, I’m just beginning to read your website after signing up for your four courses and I can feel my eagerness growing to become as personally-involved as possible in this HVN Movement and its roots in England, where the real and definitive action is. How can I sit still, over here in the Americas, when my only objection to being there is that it’s cold at this time of the year? I’m likely to be sitting on some warm beach in Mexico or Belize, reading your course material, rather than bundled up in freezing, wet London! And yet, the opportunity to dive right in among my peers is already inspiring me to get on a plane and just get started. Tell me I’m crazy! Tell me it’s not much warmer, or dryer, there in June as it is now, in December. Then, tell me the Beaches don’t have what you’ve got…. ground-breaking and very exciting New Beginnings for a whole lot of people, and I won’t be able to resist. As a long-term Voice Hearer, perfectly content and capable on my own, I find myself simply starved for the chance to TALK ABOUT IT with others of my peculiar talents; to learn what it feels like to be them; to share tips and things that have worked for me; to philosophize and wonder about it all. That’s what the UK has to offer me that no other planetary location has at the moment. Ground Zero in this exciting subject. However, time passes rapidly and I’m sure I can have my beach life and London, too, if only I can sit still long enough to experience the interchange, electronically, for the moment, till the sun comes out Over There.
Hi Linda, It’s really wonderful to hear your enthusiasm for this approach and for your trip over the the UK (when it’s warmer!). I’m not sure if you’re aware, but I’m linked with the new HVN USA board and there’s some great people to link up with the US around Hearing Voices Network approaches too. In 2017, the U.S will be hosting the annual World Hearing Voices Congress too – an amazing event which enables you to link up with 100s of people very open to talking, sharing and learning about these diverse experiences. Check out http://www.hearingvoicesusa.org to find out more π
Hi Rai, Thanks for answering so quickly. I would like to know the details on the 2017 World Congress in the US and I didn’t see the info on the website you referred me to. However, I’m not currently in the US and will have to make a special trip home to attend that Congress. I am just now, in Mexico but will be traveling south on my leisurely around-the-world solo backpacking trip, destined to take four years….until 2019. I could certainly factor in the World Congress, but do plan to spend a lot of time in the UK, specifically to zero-in on this new self-discovery possibility. Surely, we’ll meet at some point!
It’s my pleasure π The congress details aren’t released yet – our next one will be in Paris in 2016 and I’ll share the details on my site as soon as they’re available. That sounds like an amazing trip – I’m sure out paths will cross at some point. Enjoy Mexico π
Thank you, Rai,
Europe… and thus, Paris…is already in my long-range plans for 2016, so when I know the dates of that Congress, I will sign up to be there, for sure.
Hi Rai. I’ve been looking at your website and reading your blog posts and it’s just amazing stuff.
However, I do feel a bit voyeuristic now – feels a bit like reading my pals diary…….
But I will be sending the link out to a couple of people tonight!!!
Hi Elaine, thank you π Really glad that you’ve found it interesting. I think it’s more like reading the pages of a diary that have been purposefully left open for you to see, though … so no weirdness there for me. I’m always careful about which bits I share, and which bits I kept personal π Thanks for sharing it with people you think may benefit too.
Wow! Namaste.
Amazing working with you yesterday Rai. I think that you have such a unique manner which is able to make such a significant contribution in challenging traditional perspectives in mental health. We all need a slice of Rai in local areas!
Thanks Julia. It was great to work with you and the rest of the crew too. It’s a real luxury to gather with a group of people so open to one another’s perspectives and experiences. Fingers crossed that the finished product helps to reach out to, and enlighten, GPs π
Dear Ms. Waddingham:
You are an inspiration!
Thank you for your hard work to kindly help others.
My wonderful brother has severe voices at times & voices most of the time. I am trying to help him rid of these. It is tough. He also believes in Fasting for long periods. I don’t know if the two are related but your gifts to mankind have helped me. Thank you, thank you! My best wishes to you. Wishing you all the best in health, happiness & only good things! Frances
Thank you. I am really glad to hear that some of what I offer has been of use to us. Wishing you and your brother the very best x