Yeah I can honestly sit here and say my parents never neglected me but I felt neglected, there’s a difference. And what it was, again it might just be my perceptions because other things were happening with this babysitter and I wanted people, I wanted it to stop then I became naughty and I wasn’t a naughty child but I thought someone will ask me why I’m being naughty but no-one did. And just little things like I might be in the garden, my brother and sister were older than me and they might be planting plants with my mum and dad and things and I was like not doing anything just watching and I felt like a bit of an observer, I don’t think there was any malicious intent in there it was just how I perceived it. But the babysitter was hurting me and no-one was helping me and so I thought well nobody sees me that’s why I’m not getting any help and that’s why I’m really interested in the invisibility that it creates, a lot of people with mental health problems.

Well what it was when I’d had numerous admissions to psychiatric care I came home from one admission and my wife had packed my bags so she threw me out so I basically had nowhere to live.

I: And this was, this was during the ten years?

During the ten years yeah, well it was about. I got my diagnosis it was about 18 months later that she threw me out. I eventually found a flat to live in but there was nothing there was no furniture no bed nothing, I was just living in an empty flat and sleeping on the floor and I was so embarrassed to tell people what had happened in my life, I was too embarrassed to tell my parents that I’d now become a failure and I just lived a very, very lonesome, lonesome life locked away for many, many months, many, many months not speaking to anyone or interacting or anything.

I: So during that time you were by yourself in a room?

Yeah, the only, well the only company I had were my voices

I: So tell me about the company of the voices do, do they make you more lonely or do they keep you company?

Initially at first because it was all threatening I didn’t want them there I wanted just to be on my own but after a while as the loneliness grew they became a colleague really like a very, some of the things they said weren’t very nice but at least someone could see me, someone was taking an interest in me so it broke down some of the isolation, so it became, even though the content was negative it became a positive in my mind.

I: And, and you preferred to be, yeah lonely then?

Yeah I wanted to be on my own because I thought, I thought I was letting everybody down, it was a misconception I don’t think my family ever thought I was a failure but I did and I thought, you know, I’m not the person that they wanted me to be and that was wrong, I was still their son but it was, I just thought no I’m, I’m, I need to be away on my own and just, just get on with whatever’s gonna happen. Because I know, according to the voices they were one day gonna kill me which I thought if I’m on my own nobody has to witness the death.

Yeah it is, for me it’s a routine I have to have a routine it was a stark reality recently when we first went onto Covid lockdown in, in April because I have a routine. I’m up early I work I come home and I do more work and I go to bed, I work seven days a week but I enjoy it. Then there was a big break we can’t travel what am I gonna do? And it was a stark reality, when you’re on a psychiatric ward you develop a routine it’s like being in prison you have to have a routine and keep, well I did anyway I had to keep doing, and I woke up in the middle, about 3 or 4 in the morning and I turned over and my wife wasn’t there it was my main abuser and she was in bed next to me grinning at me so that was the warning sign that something’s not right here, the feelings of loneliness are coming back because I can’t get out there and interact with people like I’ve been doing I need to develop a routine.

So that’s why I’m working from home I have to get up I have to do this, do this at a certain time and I work late, it’s different things each day but I have to have that, I have to have that structure because for me loneliness creates lack of control and if I don’t have control in my life then all the bad things start to happen again. See I’m a control freak I don’t ever want to control another human being but I have to control of my own life because if I lose it the loneliness comes in and it causes mental health problems again.

And then, this is it, it comes as bit of double bind, a nurse approached me and said Peter Dr, I’ll not name this psychiatrist, so and so, Dr wants to see you and she just said to me, you know, why, and I said when am I going home and she said you’re not so I asked her why, she said well you don’t, you don’t speak to people, you don’t speak to staff, you don’t mix with other patients all you do is lay in your bed all day, I said I’ve got nothing to say, she said well if you don’t start speaking to people I will never ever let you out of here. So I started telling my named nurse about my voices and my paranoia and then when they got on ward rounds the same psychiatrist said we can’t let you go you’re too delusional with what you’re telling the staff, so I’d shot myself in the foot I was back in, I’m gonna isolate myself again because if I tell those people I’m going to be in here forever.

I:         So how did you get out?

R:        I learnt to tell lies. Are the drugs working? yes, and they weren’t. Are your voices there? No. Are you feeling paranoid? no. If I’m gonna be isolated and lonely I might as well do it in my own home.

Well I think which is started in some places now there’s Hearing Voices support groups on some psychiatric wards.

I: Okay

I could have met people with similar experiences, you know, I could have just walked up to someone that had been in the group like xxx if we’d have had one there I and I could at least told them about my experiences and what I was going through, I wouldn’t necessarily have wanted an answer but I’d have wanted someone to listen and if someone’s listening to me they see me, I’m not lonely anymore, I was lonely with these voices and these voices were difficult. And I remember on one occasion [um] I’d had a really bad sickness bug and I was on the ward and I went to, just vomited about six or seven times, it was in the early hours of the morning and I went to the staff and I said I can’t stop vomiting I’ve been vomiting about six or seven times and just, well you’ve coped with it about six or seven times, carry on and that was it.

And then I got a phone call from the social worker and they said it sounds very isolated and he said did you know there’s a Hearing Voices group at [place] so I said no and he says would you like to go so I said no. But this guy didn’t give up he just kept encouraging me to go, he didn’t tell me to go he just kept reminding me it was there. And I went one day and it was a real eye opener and I was, I was scruffy, I didn’t wash I didn’t shave I was wearing rags and I went to this group and there were ten other people there but what struck me was they were all smart and presentable and I thought well they can’t, because I believed in the diagnosis schizophrenia then not now and I thought well they can’t schitzos, they should be scruffy like me. And they started to talk about their experiences and at last I thought I’m not alone with this anymore it was a liberating experience, I could take this mask off I’d been wearing for years and I felt I belonged somewhere and that was a big turning point for me

I: Very interesting, so finding people that had experienced similar situations than you made you feel like you belonged to a group?

It was like yeah it was like going into a family I, I could talk about what I wanted, no-one judged me.

I: Very, very interesting

Well even if it was only one day a week for 90 minutes it broke down that isolation

And she said did you know the Hearing Voices group’s closed at [place] so I said no, she said why don’t we start another one, I said no I’m not bothered she went come on Pete let’s do it together lets’ do it on support and education and we did she encouraged me to set it up and it’s now the longest running group in the world, reaching its 25th year next year.

I: Wow

So by doing that it gave me a purpose because I got to run the group I got to get people to come I got some flyers I had a purpose in my life and then people started to see me I became someone again but I wasn’t doing it for financial gain I was doing it to help others which made me feel better in myself and started to break down that loneliness.

I: So purpose in your life that’s very interesting. And do you think it’s, the purpose in your life but also helping others you said.

Yes.

I: And that made you feel less lonely?

Yes I’m, helping others achieve something as well, you know, like the OT helped me and so did other people as well. As I say when I got involved more with the Hearing Voices movement I met people like xxx and the guy called xxx he was an Emeritus Professor of psychiatry anyway he was still very revered in [city], world famous and he invited me to his home and he used to tell me about the history of psychiatry and he was such a fascinating man and I thought why is this man that’s so famous interested in me, maybe I’m not invisible maybe I don’t have, because I’m not lonely and isolating myself if I’m out there I can serve a purpose by learning from him how to learn to help other people and learn other people about things.