If you had to give one bit of advice, what would it be?
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To not be afraid of the diagnosis. It doesn’t make you a bad person. I think it can be portrayed in the media and TV shows like the word psychotic is used to describe a murderer, but that’s not who you are. So, don’t be afraid of yourself because of that description that’s flying around. It’s an illness and it’s not your fault.

I think for the young people themselves, you are not alone and there are people out there that you can connect with. Locally, to me, there’s no face-face groups that meet up, but I have made some of my closest friends and met them in person through online groups for people, young people struggling with psychosis with BPD with depression with mental health in general. Reach out to those people if you feel that that is what you need, if you need to know you’re not alone in terms of other people experiencing the same thing. But also not to be scared to reach out to those closest to you. Some may react badly, but those people will never be, their negative reactions will never outweigh the people whose positive reactions could potentially help you survive the most difficult time of your life and move on to, to living a full life. In terms of friends and family, I would just say, listen. Don’t say, oh you can’t be experiencing that or that’s not real’s. Validation is really important like, for example, saying, I know that that must feel really difficult for you. And I’m gonna stay here. I am not experiencing it, but I know you are and that’s okay. But we will get through this and you can carry on or you can do whatever it is in that situation that needs to be done’s. And also there are groups out there for, for carers, for friends and family, connect with them as well.

Make a diary. Whether it’s electronic, whether it’s physical, make a diary. In that diary, write everything that happens. Everything. I first started using my diary as a measure of a bad day. So on my really bad days, that’s the only time I write in it. My really bad days I would write, today, I’ve considered suicide at least this much more than I did last time. I’ve considered doing this this much more than last time. I’ve almost given into the voices and gone and killed this guy. I went to the shop anyway. But while I was doing that, I had a panic attack. I wrote in all my bad days at first. And then when I had another bad day, refer to it. There is a bad day? Not really. So what’s that mean. Can I do something with this, with this information can I actually go out maybe? Or should I just take it as a bad day, right it down and learn from it next time. But, the diary is what I use so much, because [one second pause] the way I feel about mental health is up here. It’s not a hole in your head. It’s not a gash in your face. It’s up here [indicates head]. And what’s up here will go round and round and round over and over and over again. There will be no end to it, I promise you. Writing it down makes it so much easier.

Because one, you can hear writing crap sometimes, you write down things that are just ridiculous, like, oh, this ridiculousness. Why were you even thinking about this? Other times you write down something that was going through your head at the time and that’s just enlightening that you go, wow, I thought of that. I, I said that. Why would I say that unless it’s true? There’s other things that you write down that you’re gonna hate about yourself. But writing ’em down gets out of here, even if it’s just for a second. Get it out of here and you can read it and when you read it you can just take it from a different perspective and go, okay, this doesn’t actually sound so bad now. And that’s what I would say is, get a diary and take every win. Write that win in the biggest letters you can find. Get a billboard if you have to. Write your wins down and take ’em as much as you can, because that’s what I do. And I have this power over my voices now that I don’t think I’d ever have. I thought I’ll always gonna be the scared kid in the corner, crying my eyes out every day. That’s what I thought my life was gonna be from now on. I went and did stuff and now I’m this person who I’m gonna be helping people soon. Actually helping people soon.

You can’t win every battle. You will exhaust yourself trying to respond to everything they say. The way I deal with it is I compromise, with the voices. I talk to them and so if I’m in an environment where I can’t be doing psycho things right now, I say, look, guys, I hear your concerns. I can, I can feel the anger you want me to feel. But right now, I need time to do this and I will talk to you later. And I have to follow up on those, on those promises as well. I can’t just say, I’ll talk to you later’s and then later on be like I’ll talk to you later’s [laughs] can’t just do that. ‘Cause that’s when they’ll really start to – but with me, I will then put aside ten minutes later on in the day where I’m alone and I’m in peace and I’ll say, Right, [inhales] what do you wanna say to me?’s And we’ll talk it out in a strange way it is strange, because I say some things out loud, I say some things in my head. That’s why I do it alone. But if, for example, one of the concerns was a lot of my concerns are based around men behind me or men giving me a weird look. If one of their concerns was, that guy needs a beating because he looked at me that way. Then I say, Look, look, look, I know that, I know that he looked at me that way. But, what happened from it? What evidence have you got that proved what you were saying is right? Nothing happened. You, you were trying to do what you always do and create something that wasn’t there. And because I didn’t react to it, you are angry, but that’s fine, because I understand. I understand why you’re angry. But I’m not going to act on it on everything you want me to do.s And they don’t like it sometimes. But, even if they don’t like it, the power shifts and that’s what’s important, the power shift shifts slightly over to my side. And then what they’re saying has a lot less effect.

And it’s, the advice I’d give is it’s finding what works for you. But don’t be afraid to try. There’s a lot of things your brain can do. A lot of ways it can trick, trick you and trip you up. But, you have to learn yourself that not everything that happens in your head is real. It’s called, confirmation bias. When something happens, if you’re powered by something and you’re constantly looking for evidence that that backs up that paranoia, rather than looking at the broader picture.

What would you, any message or advice that you would give to someone, a young person who’s in that —

Just, don’st take drugs. Or you will end up like me and spend three and a half years of, if you are prone to that sort of mind. That is to know, don’st take drugs anyway. Or you’sll, I mean my best friend died, died of like, like a heroin overdose. It’s not nice.

And I’sve spent three and a half years locked up. I couldn’st leave. A building not much bigger than this, for six months they wouldn’st let me out of the building.

At the hospital?

And banned from going to like, from like, to like America for another eight years or something. And it’s like just, and it, that’s not worth it, is it? If I could go back, I wouldn’st do it all over again, not at all. It’s scary.

What would you say to someone who, who’s been in the same situation and they’sre wondering, How can I move forwards?

To move forward, you have to look at your life and go, Oh, my God, my life is awful. Oh, my God, I’sve been a dickhead for like years. If I don’st sort this out, I’sll just be a revolving door psychiatric patient who’s got a drugs problem and serious emotional problems. And you’sll lose everybody. You’sve gotta look that hard in the mirror. Then you’sve gotta completely change your life on like a radical level.

And you’sve got to accept there’s loads of stuff you can’st do no more. You’sve got to like spend nights in bored out of your mind while all your friends are going out to parties. Because you’sve got to maintain your mental health. And then it starts to get better. But you have to want to make a change that badly. Cos when you get as ill as I was, they said I’sd never get better.

So you’sre proving them wrong aren’st you?

Yeah. I know a few other people who have, they were told they’sd never get better. And now, like my friend [friend’s name], they, he was on a ward for like three years straight and in a psychiatric prison. And now he goes round the world doing talks and lectures and stuff. And they told him he’sd never get better.

I’ve got a lot of respect at the moment, because the trend I’m seeing in mental health is that patient perspective is becoming hugely important. Hence this whole thing we’re doing today.

Exactly.

This whole website is about – It’s not relying on the health professionals, it’s relying on me-

People, yeah.

Yeah. Want to learn a bit about psychosis? Maybe watch one of my videos. You know? Or the video. And just keep that trend going. Keep respecting the fact that patients have a better insight than you’ll ever have. You know? If Who’s going to know more about bipolar? The patient with bipolar or the person who’s read a book about bipolar? That’s, that’s the point I’m trying to make. But of course you do need the academics, you need the people that read the books and the theories, because they’re better at putting them in the second book. But, yeah. Keep that trend going, I like it.

That gives a whole other perspective on the move towards – you know – involving patients in decision [inaudible] people in decision making about their choices, and all that sort of thing. Yeah

It’s hugely important. I think patients are like non-executive directors. You know? Non-executive directors are paid decent money to do not much, just offer their perspective. And I think patients are free non-executive directors. And they’re subject matter experts that would be really crucial when it comes to big decisions in the boardroom. Or future, you know, future discoveries or advances, yeah.

Okay, so you’re training now to be a mental health nurse. What’s that like?

It’s good. It’s tiring and it’s a lot of work. It’s definitely worth it though. It’s annoying when you have to wake up at 5 am to go and do a 13 hour shift. You don’t get paid for it. But it’s still worth it. Still worth it. It’s just difficult, but I enjoy it. I’m looking forward to finishing this, the course though.

And do you think that your own experiences make you, you know, add value in terms of what you offer there as well?

100%. I think the fact that I’ve been through the things that I have has really really helped me to have empathy and to be kind and that’s the most important thing. I’ve spoken to a lot of people, I’ve said, you know, what do you think it takes for someone to be a good nurse? And they say, you know, someone that can understand, someone that can be nice. Someone that can be patient. Someone that can be empathetic. And, I have all of that in bucket loads because of what I’ve been through. So I think that has really helped, yeah.

I was given a mentor at one point. And I kind of didn’t work—he wasn’t very good. Not to be rigid with their thinking. Not to base too much around being the—to be kind of just naturally empathetic and think on the spot. And think, not to think like, he’s in that category, you know, think about the person as an individual rather than thinking about them as they are the category psychotic law. Psychotic people are the same. People like, you know, or another category to think, yeah. Kind of if he was a bit of a rigid when I was unemployed. He was a bit he was a bit, you know, he was a bit rigid. He kind of tried to develop strategies for me to help me, which didn’t seem to fit into my problems or my personality. He just seemed to be the general label that I was in and this was a strategy he’d heard of, if you get what I mean. Look at the person as an individual, yeah.

And is there anyone that has done that?

Yeah, the team, basically. The mental health team, yeah. The psychiatrist is very good here. He’s very empathetic and very person orientated.

So personally I feel one way to deal with it is force the people to sleep whether it means just putting them onto something. Just make them sleep for a couple of days, because I’ve spoken to a lot of people and a lot of people say, like, they just didn’t get to sleep for like four or five days and obviously that’s really like quite the concern. So it’s just get a lot of sleep and then ask questions and then every day try and ground them back to reality, so it would be like, hello, your name’s Sameeha [surname] they just wanna to confirm you’sre 22. Just wanna confirm you live here. Yeah, just bring them back to reality, do you know what I mean? Just make ground them back to where they’re supposed to be, ’cause that helps like sleep, grounding and then try and, try and speak to them and ask them what’s the matter. ‘Cause it, it helps regarding the quickness, the swiftness of their recovery. Whereas everything else, I think it complicates things more. I do think medication does help regarding the kick start of it. But even I, I remember there was times where I just like hid it under my tongue and they, they didn’t know, kind of thing. So, I wasn’t taking it consistently. And straight after, the whole thing in January I just refused to take them, because I wanted to rely on my own mental strength. So I think although medication is always necessary no matter what, it should always be kind of like last resort. Let’s see if we can get them on, on their own strength and on their own mind, on their own kind of like mental foundation. So they don’t have to rely on all these things.

Yeah well I think one of the good ways of providing a very good tailored service would be for mental health expert, professionals to work with the families, to work with parents, to work with brothers and sisters in that family, to sit down and to talk to them.

So for example I’m a patient it would be great if my parents and my family were able to sit down with my doctor, and my psychiatrist and the mental health nurse and the crisis team and talk together and find out the best way forward so that everyone feels involved, everyone feels they can contribute. And also then the family who have no experience of mental health services have a better understanding of the system, they are no, they know that in an emergency where they can take their son or daughter to, rather than them knowing nothing and then when an emergency arises they just sit there and say, Oh my God, what do we do now? I think that’s a good way, that’s a good sort of technique that could be used. I think that is not used and it could be used more frequently certainly.

I think most of them could listen better. I think they know what they’re expecting to hear. And I think they kind of assume that most people are kind of the same. Because although they say to you, “Oh, everyone’s different, everyone’s treated as different. We want to work out what’s right for you.” I think actually the impression you get is that they’re kind of just saying “Oh, we tried that on that last person, so you can have that medication too.” And they don’t really kind of let you decide for yourself. Like the best psychiatrist I saw gave me a list of medications, described each one, and said, “Which one do you want to try?” And although okay, he still had a lot of influence in it, he was like “I think you should take this one.” And of course I went with the one that he recommended. But it felt a lot more like I was getting a say in it. And that it was about what I needed, rather than just this is sort of the first one we try, then it’s that one, then it’s that. And it was a bit kind of more specified for me.

I think be patient. And if people kind of have like weird delusions about friends – I know at some points I’ve had, I’ve messaged friends saying, “Stay away from me, because I think you’re trying to kill me.” And I think from the point of view of the friend, that’s really difficult to know what to do. Because you kind of want to respect someone’s wishes and not come near them, and maybe they do need space. But I think you have to kind of reassure them constantly that you care. I think – I think when you’re the friend, if you’ve told someone that you care two months ago, you think that you’ve said it. But to that person, they probably need to be told every week, or every couple of days, because they’re not going to believe you. It probably takes a lot of saying for it to really stick. And that sometimes you need to kind of show it, and not just say it. And take care of people’s kind of like physical needs, like – might make someone feel a lot better if they just had a clean house. And food.

If you feel like you can talk to your family then do it. But for the family members, the best thing you can do for somebody that isn’t talking to you about it is give them a hug. Touch them on the shoulder every now and again, make them know that they’re loved. Because them talking to you, them not talking to you about it isn’t that they don’t trust you. It isn’st that they don’t, they don’t feel like you don’st respond well. It isn’t nothing like that. It’s so many different aspects that makes them not wanna talk about it to you. But, you loving them unconditionally regardless of the fact that they don’t talk to you about it is just such a big boost. When I, when I walk in for my therapy session and my sister and brother is there and I look like [exhales] everyone comes over and hugs me, individually and all together and they say, we love you, Dom. Just we’ll sort out the dinner and whatever or whatever.

I think family always come from a good place like they always come like it’s oh we care for you. Especially that time when I was in that place, my family had come to the hospital. My mum and my sister they had come and made sure that I was visited every day, which is great because you’re just stuck there doing nothing. So having people come there and visit you is a good support system as well. Just to let the time go by. So, yeah, no, having them there and just it’s always, it’s always nice to have someone concerned for you. But I think with family, with family they’ve got to be careful because sometimes someone’s over concern can be really really constricting to deal with. So it’s just like they need to know that you’re human and anything that you do shouldn’t always just be that, it might be the psychosis again or, or this behaviour seems like that. Are you unwell again? Are you unwell again, Sameeha? I’m just like, no, calm down whatever, it’s fine, it’s fine. It’s just like, be aware that, that you can be supportive and you can be there for your child or whoever. You can be you can be their rock but you don’t need to overdo the concern. You don’st need to overdo like the watching. You don’t need to take responsibility for it or unless that is someone’s because they have themselves. They have their own being. They have their own mind and they don’t need you or like the family is kind of over, over-watching of you to make sure you fine like the person’s most likely always got it, kind of thing.