Lucy

Age at interview: 22

Age at diagnosis: 21

Brief Outline: Lucy experienced psychosis and depression after suffering from two head injuries. When she took an overdose the crisis team asked about her psychotic experiences. Medications have not helped and she has suffered bad side effects.

Background: Lucy is White British. She was unemployed at the time of the interview. Since the interview she has started working as a tax assistant.

More about me...

Lucy had a head injury in 2012 which lead to daily migraines that continued for three years. She experienced depression at the time but didn’t seek help until a second head injury lead her to start experiencing psychosis. She had thoughts in her head that were like a voice giving instructions and she didn’t feel she was in control. She later heard external voices and experienced visual hallucinations and unusual thoughts and delusions. 

When she had her first experience of psychosis Lucy remembers being very stressed, but there were no real warning signs other than low mood. She was driving in her car with friends when she had a sudden thought to crash the car and felt shaken afterwards. After a few weeks she started having hallucinations: for example the figures of people on the street signposts seemed to be jumping out at her. The only time previously she had had anything like that was when she was on strong painkillers and had to look twice at everything to double check what she was seeing. 

Some months later a concerned work colleague took her to her GP to get help. The GP put her on antidepressants for several months and gave her weekly sick notes. It wasn’t until she took an overdose and was seen by a crisis team and a psychiatrist that she was asked about the hallucinations and delusions she was having. Although she was prescribed anti-psychotic medication no one sat her down and gave her a diagnosis. It was only when she researched the medication online that she realised she had been experiencing psychosis. Lucy finds it frustrating not to have had a diagnosis. She thinks she would feel more confident about assessing her chances of getting better if she knew what she was dealing with.  

Lucy had been working full-time when she had her first experience of psychosis but she became too ill to work. She eventually resigned her job and she now worries that potential employers will be scared off if she tells them she has experienced psychosis. Going from working full time to being unemployed has meant a big change financially for Lucy. She bought a flat the year before she first experienced psychosis and that has meant that she cannot access the same benefits as those who are renting. Although she gets just enough to live on, this impacts on her social life as a young person. If her friends want to have dinner out for example, knowing that the evening would cost a fifth of her income for the week changes how she feels about going out. 

Lucy has always been honest with friends about her psychosis and she says friends have been the best thing and the worst thing. She remembers saying things to close friends when she was having a really bad time and wasn’t aware it would upset them. A few of her friends stopped speaking to her but Lucy still has good friends who come over to see her and keep her company when she’s had a really difficult night, or cook for her, or take her out. 

On a day to day basis the psychosis has also affected Lucy’s sleep and worsened her low mood. Lucy spends four or five hours trying to get to sleep some nights. Hearing voices during the night means Lucy used to not feel safe in the house, and would go for long walks (up to eight hours), not returning home until she was so tired she could just fall asleep. The psychosis has also worsened her depression and low mood. Seven out of the eight times that she has taken an overdose she heard a voice in her head telling her to do it. Once she overmedicated just to try to stop the voice from telling her to kill herself. 

She was under the care of her local Community Mental Health Team (CMHT) initially but they referred her on to EIP. Her EIP team are now talking about referring her back to the CMHT and she feels as if no one seems to know how best to help her. She was told to attend a series of group counselling sessions (CBT focused) by her GP and had to do this before being referred to a mental health team. She found that she was too unwell by that stage to engage with the group and found it unhelpful. The other people in the group had more moderate depression and saw improvements, whereas she didn’t. 

Lucy has tried a lot of different medications. She has never felt a benefit from taking medication, and it has often made her feel disconnected and empty. On top of this she finds that she is prone to experiencing the worst possible side effects from any medication she is taking. She took quetiapine (anti-psychotic) for seven months. It made her feel tired all the time, made her gain weight and it made her psychosis worse. Eventually she insisted that her GP take her off. She suffered withdrawal symptoms such as being unable to eat or even sip water without being sick. Her mental health team suggested her head injury made her more likely to suffer with withdrawal symptoms but she thinks she was taken off it too rapidly. Lucy found that as soon as she stopped taking her medication the hallucinations and external voices stopped and the internal thoughts/voices have almost gone. 

After suffering two head injuries Lucy started hearing voices and having “weird thoughts and delusions”.

So in 2012 I had a head injury. And it caused what they call new daily persistent headache, which is essentially like a migraine every day for forever, basically [laugh]. And I think at some point during that my mood got very low, because the headache didn't stop for almost three years. And so I guess I probably had depression then, but didn't really do anything about it, I didn't go to the doctor at all. And then in March 2016 I had another head injury. And then after that I started developing symptoms of psychosis. So like a voice in my head. And then eventually external voices, as well. And hallucinations. And just weird thoughts and delusions, and things.

And that was? When was that, that first experience of the psychosis?

March last year.

Yeah. So, 2016. 

Yeah.

So do you remember much about sort of just leading up to that first experience?

I'd been quite stressed. I had a lot of things going on. But I don't - but there wasn't any kind of real warning signs in me, other than the low mood. There was nothing to suggest it was going to happen. 

And then what was it that you noticed first?

I tried to crash my car. And didn't, it was fine. But that was quite scary. And then I lost like all concentration, couldn't work. Was just finding it really difficult to function. And then friends started noticing the things I was saying, were a bit kind of odd, and just not really like me. And then it was probably a few weeks before the actual hallucinations started. Probably by June, I guess, they were - it was quite full on.

Lucy was given anti-psychotic medication by her crisis team when she had delusions after a head injury. She only realised she was being treated for psychosis when she “looked up” the medication she had been given.

Do you remember the first time somebody actually mentioned - a medical person mentioned - the word 'psychosis'? And what that was like?

The first time they mentioned it was when I saw community mental health in autumn. But I think before then, when I'd been to the crisis team and they'd started talking about voices, and then they'd put me on antipsychotic medication, I got home, obviously googled the medication they'd given me, and thought 'oh, an antipsychotic, like what do they think's wrong with me?' And then looked up psychosis on I think like the Mind web page. And started realising that actually I had most of that. So I think probably would have been better if I'd had a doctor sit down with me and say, "We think you've got symptoms like this, and therefore we're medicating you like this." But instead I kind of just found it out at home.

And probably freaked out quite a lot about it. And then, and then like a while later after that, before I was even assigned to the psychosis team and it was just kind of question mark over whether I had it or not.

Lucy thinks the medical team already have a diagnosis for her and haven’t told her. Her psychiatrist told her a diagnosis is not worth much and can change.

I found it quite frustrating, because I'd quite like to be able to just label it, and go 'right, that's what I've been experiencing'. And to say to other people, 'this is what I have', and then they can always research it or try to be a bit more understanding of things. But my psychiatrist has said that he just doesn't think that diagnoses are worth much, that we don't really know enough about mental health and the causes and the outcomes to be able to say 'that's what this is'. And they've said that even if they gave me a diagnosis, you know, within six months it could change and I'd be all angry at what they'd given me, when it might not have been right, and. But it's kind of an ongoing battle with them. Because I keep saying every single meeting, "I would really rather know." And I'm sure they have ideas, but they just don't tell me. Because I've got a friend with the same team, and they had a diagnosis for her but they didn't tell her. And then she phoned up the crisis team who'd got access to all the paperwork, and they accidentally let it slip to her what her diagnosis was. Which was much, much worse than if they'd just said in the first place, "We think you might have this." And I think at one point I thought I saw in my GP's notes they'd said schizophrenia. 

And I don't know if that was true or not, because I just kind of saw it on the screen pop up, and I was talking about other things at the time. But for, for quite a long time I was angry at the team because I thought they'd written to my doctor and said 'we think she has this', but they weren't being upfront with me about it. And they'd kind of mentioned it in passing, like 'well, we could tell you it's that, but we don't actually know, and it wouldn't make any difference anyway if we told you that'. But, yeah, I've always felt a bit like they're being secretive and not, not giving me the whole story with diagnosis.

When a healthcare professional suggested to Lucy the “thoughts” she was struggling with were psychotic “voices” from the subconscious part of her brain it made it worse, something harder to control.

I think one of the healthcare people suggested voices. And then I think I just kind of latched onto that, like 'yeah, it isn't me, it's this voice - it might be inside my head, but it's not a voice from me'.

Okay. And how did that change things? Or did that make an impact?

I think it made it worse for me, in a way. Because like they kind of say, you know, "This is just psychosis, and it's how it works." But I always thought 'well, I understand that it's still be subconscious brain doing it, like it is still me'. And then I'd kind of think 'well if my subconscious is trying to get me to do awful things to myself, that's kind of worse, like that's not even - it's not even a thought I can control, that's just my deep down what I want to do to myself, it's just so bad that I can't register that it's me thinking it'. And I think all along I knew that I, that I was the voice. But just didn't really want to kind of think about it that way. 

Lucy hasn’t received a diagnosis in the year since her first experience, while other young people she knows have. She feels a diagnosis would help her to feel more confident, allow her to know what she’s dealing with and what her chances of recovery are.

So I've been to hospital a few times for overdoses. And afterwards, when you see the mental health team in hospital, they always say, "What's your diagnosis?" And it frustrates me, because they're with the same team as my psychiatrist. And yet they're all coming, coming from different directions, in that some people put a lot of value on the diagnosis and other people don't. And I just think there should be like an across the board decision on 'do we accept diagnosis, or do we say we have no idea, so that they don't mean anything'. And people in the same team as me will have a diagnosis, and they'll kind of get us altogether at, you know, support groups and things. And some people are there that have been diagnosed, and they go confidently 'I have bipolar'. Whereas I'm a bit kind of in the dark. Like I don't really know what I've got. And they kind of just say "Well you've got psychosis." But I think that's a symptom, not a diagnosis. And I'd feel a little bit more confident if I could say "Well if I have that illness, like there's that much chance of getting better." Because even if they said schizophrenia, actually one in four people with schizophrenia will make a full recovery. But I'd rather know that, and know what kind of you're looking at. And then kind of just process it and deal with it. 

Lucy, who had her first psychotic experience less than a year before she spoke to us, finds it hard to spot the signs when she is deteriorating. By the time she reaches out for help she is in ‘crisis’ and distraction doesn’t work.

I think actually, if you had somebody that was kind of bullying you all the time, that lived with you and was always saying "Oh, you should just do this," you eventually would give in. And I think it's more like that than just a person saying "Why don't you cut yourself?" Like it's more of a, all the time, wearing you down. And they kind of - And you phone up the crisis line, and they'll kind of say "Oh, just try and distract yourself from it. So, maybe listen to music or watch a film." I think those things can work if you've got like a mild issue, but I think once it gets really severe and you're calling the crisis line, I think it - for me, listening to music doesn't really help, because I can't focus on that when the voice is just so kind of big in my head.

And does it sort of take time to get to that stage? Are you sort of aware of it getting to that stage, or?

It does - it kind of builds up a bit. But then it kind of very suddenly will get really awful. And I don't - I'm not very good, I guess, at working out when I need to get help before then, because I feel like I shouldn't go and ask for help when things are quite mild and I'm just noticing a bit of, you know, not feeling great and, and thinking bad thoughts. But actually I probably should get help then, and then maybe it wouldn't escalate into the position where I don't think I'm in control and I'm looking at everything and thinking how could I take that to harm myself. And, but it does, it just slips. And then suddenly like nothing they kind of suggest really works. And it always, always ends up with like a crisis, and - or an overdose, or - or harming myself quite badly in some way.

Lucy had been in hospital after she took an overdose. Afterwards she spoke for the first time about the thoughts in her head being “like a voice”.

So I took an overdose in July. When I was in hospital - when I came out, I was with the crisis team, and the crisis team kind of got a psychiatrist on board and then asked me a lot more questions than like the GP would have done. And they, they kind of - I talked about the thoughts in my head not being from me. It was almost like a voice. In that I didn't feel like I was in control, or thinking it myself. And they said - so they put me on antipsychotic medication. And then within a few months of that, I was referred to the community mental health team, who then referred me to the early intervention psychosis team.

When Lucy felt “numb” self-harming was a way to get some “emotional output”. She still self -harms and finds it difficult to ask for help.

I think a lot of the time I was feeling kind of like just checked-out a bit, like numb and empty. And I think I started self-harming just because it was better to feel like the self-harm pain. And just to kind of see some kind of emotional output, rather than just because I'd like kind of want to cry and just not be able to. And just kind of feel all like pent up inside, that I couldn't let things out. And then I think self-harming helped that for a while. But I think - I still do it now, and I think now it's kind of become like an addiction that I can't - Even if I wanted to, I can't stop it. Like I just kind of crave it, sometimes.

And does it sort of take time to get to that stage? Are you sort of aware of it getting to that stage, or?

It does - it kind of builds up a bit. But then it kind of very suddenly will get really awful. And I don't - I'm not very good, I guess, at working out when I need to get help before then, because I feel like I shouldn't go and ask for help when things are quite mild and I'm just noticing a bit of, you know, not feeling great and thinking bad thoughts. But actually I probably should get help then, and then maybe it wouldn't escalate into the position where I don't think I'm in control and I'm looking at everything and thinking how could I take that to harm myself. But it does, it just slips. And then suddenly like nothing they kind of suggest really works. And it always, always ends up with like a crisis, and - or an overdose, or - or harming myself quite badly in some way.

EIP have “struggled” to support Lucy. She was referred to them by CMHT, but EIP are referring her back again because they’re “not sure how to help”. She feels she is being “passed on”.

And has that been something - So now that you're with - is it just - It's just with EIP, is it?

Yeah.

Yeah. And do they sort of look after all, all elements of your experiences then?

They do. But I think they're struggling, because they are referring me back to the mental health team. Because they can't offer things for everything. And I think they're kind of feeling a bit stuck, like they're not really sure how to help.

And what are your sort of thoughts and feelings about that? About the support you need?

It does kind of feel like being passed on, over and over again. Because every couple of months I seem to change. And then there's a lot of, you know, assessments and meetings, and finding out - you know - meeting the new people, and waiting lists. And so I've recently - I got referred to the EIP team last autumn. And then this week I finally got my assessment with a psychotherapist to discuss what therapy I'd be getting And then she said, "Oh, there's not too much, of a wait on this first thing we're going to put you on - that's two months. And then once you've done that group kind of skills-based thing, then you can get - then we'll decide if you need proper therapy." But that'll be in four months time. And four months seems like quite a long time, when every day is a struggle. 

Have you got a sort of key contact person, or anyone that you feel able to talk to?

Yeah. So I've got a care coordinator and a support worker. And I don't find my care coordinator very easy to talk to, but my support worker's really good. But yeah, they're good but it will be changing when I go back to the other team, because they don't work on that team. So I'll have to have a new support worker assigned.

So it's moving from EIP to sort of mental health, adult mental health?

Yeah, it's the MHT, community mental health team.

Community mental health team.

Yeah.

And do you know any of those people from before, or?

Briefly. But I wasn't really with them for that long. So they kind of did all the assessments, and then said "You're not right for this team." So they passed me on. And that kind of feels like they didn't know what to do, and they passed me on. And now they don't know what to do, so they passed me back. And it's probably - To them, it's probably not quite - I'm sure in their meetings they don't discuss it in that way or think 'god, we don't know what to do, so we'll pass her back', but I think at my end it kind of feels like that. 

Lucy talks about going to hospital after taking an overdose.

The last time I was in hospital. I was in A&E two weeks ago, from an overdose. And the whole run-up for the last two weeks before that, I was saying I need to be in hospital. I think four times, the day before the overdose, I said I needed to be in hospital. And they kept saying "Oh, well maybe we'll wait until, until Monday. And maybe we'll talk to a doctor then and see what they think, and about whether it'd be good for you." And then I was, [laugh] I was in hospital because I ended up in A&E from trying to kill myself. 

And how did you get there?

A friend took me. So I was - I was sick at home and then kind of had a bit of a freak out, and I got really angry at my body for not doing what I was telling it to do. And then my friend that I called kind of yelling and swearing, and really upset too, called the crisis team. Because I'd given a couple of friends a few important phone numbers. And then the crisis team called and said "We're going to call you an ambulance, unless you get someone else to take you." And I said, "It's fine, I'll get - somebody will take me." So a friend came and took me to A&E. 

Can you tell us a little bit about what that was like, going to A&E at that crisis point? So you weren't having a psychotic experience then?

Not at that time, no. I think A&E can be quite a frustrating place. It's quite scary as well, when you know that you've kind of put yourself there. Because I think I always - Once you get there, they are really helpful and they're nice, and they don't kind of ask - you know, they don't kind of go, "Well, what do you think you were doing, making yourself end up in hospital," or anything. They're all very professional. But I think on the way there, I'm always thinking you know, they've just going to hate me, like I'm just wasting everyone's money and time, and resources of a hospital, by doing this. And it's happened - I've overdosed eight times. But only four of those times I've gone to hospital. But, yeah. I think the actual experience isn't as bad as, as the thinking about it beforehand. 

And does it - Would you say that the taking an overdose - those times where it happened - did the psychosis play any part in that, or?

Yeah. All of the times, except for last time, which was two weeks - last week. It was the voice in my head that was kind of just saying "Just take an overdose", all the time. And, but I took an overdose about a month ago, and it was just because I - I just said, I got to hospital and I was like - I just said, "I'm trying to shut my head up, like I'm not - I didn't try and do this for any reason other than to get the voice to stop telling me to kill myself." Because I took like small number of tablets that I knew maybe weren't good for me, but weren't going to kill me, just because I thought well if I - if I do something that the voice is telling me to do, the voice will stop, and I'll just be able to rest. And the problem is, that it does kind of work. So, giving in to whatever the voice tell you does always stop it. Only for a while. Like it'll always come back again. But I think in hospital they were quite worried, they said "Well, what's going to prevent you from doing it again? Because obviously it's worked for you this time, so what's the deterrent, really?" It's like the only definite way I've found just to kind of quiet down the instructions in my head.

There were times when Lucy wanted to be in hospital because she didn’t feel safe living alone, but staff thought she would be better at home.

I mean, my parents have said I could stay with them. But I don't really want to move back home. And at times when I felt really, really unsafe, I've asked to go into hospital. But they just kind of ignore, or say "Oh, maybe next week, we'll think about that." Or, you know, "Looking at your notes, we might want to admit you, but actually we've met you and we don't think you'd find it very easy in hospital, so we think you're better to stay at home." Which is quite difficult. Because I think sometimes, you know - I wouldn't ask to go there unless I was desperate, because no one wants to be in hospital. But I was desperate. And they don't really listen that much.

Lucy found that it was only when she stopped taking antipsychotic medication that the voices stopped.

And on a kind of day to day basis now, how do the symptoms kind of manifest?

It - At the moment, for about a month and a half, they've been almost gone. So I get the occasional like internal voice/thought that's not me. So, much, much better than it used to be. I found that as soon as I stopped taking the psychosis medication most of my symptoms went away [laugh]. Which I think is quite unusual. But can happen. So I think now I'm left with kind of just the - kind of the mood issues. And still struggle with things like concentration. But I think the - like the hallucinations have stopped completely now. And the external voices have stopped completely too. So, yeah.

Lucy experienced psychosis after a head injury. She was referred by her GP for general group therapy sessions for depression and anxiety, but the other people attending had relatively mild depression.

So at the time, I was with like the local kind of counselling service that everyone gets referred to whenever they go to a GP for like depression and anxiety. And it was quite, it was a really bad experience for me, because it was a group of people that had fairly moderate depression. And then every week they would get a little bit better. And every week I'd say, "This isn't working for me, I'm completely different to everyone else doing this, this group. And nothing's changing, and I'm not in control of my thoughts." And everyone else kind of knew that they were. And so I was getting worse and worse. And I was getting quite angry at the system for not, for not kind of recognising that I wasn't ill with the same thing that they had. Yeah, and. I think through that time. So I stopped working in June, but I didn't quit my job until September. So I guess around that time was when I worked out that it was kind of a permanent thing. And I started self-harming quite badly over the summer. To a point that I couldn't go out of the house unless I knew I had like a blade on me somewhere. Yeah. So I think that, that waiting time between asking for help and then help coming was the worst bit, really.

Lucy’s doctor gave her temporary ‘sick notes’ when she started experiencing psychosis. She found it “stressful” thinking she might have to go back to work, because she felt so unwell, and eventually she handed in her notice.

And in terms of kind of like work? How did they kind of respond? Because obviously you were working full time, you said?

Yeah. They were really, really good mostly, I think. I would - My doctor kept signing me off for two weeks at a time, and at the time I thought it wasn't that serious, so maybe - you know - every two weeks I would be able to go back. But I think that lasted for three months, with every week or two the GP going "Okay, let's just give it another week and see how you are." And I think work were getting quite frustrated, because you can't just lose an employee for that amount of time and not have some - not know whether you need to get someone to cover her, or. So they would kind of ask me, "Oh, well how long do you think it's going to be?" And then they'd start saying things like "Oh, so do they think this is going to help your recovery then, being off for this long?" And I would say "Well no, it's not that it's for my recovery, it's that I would physically not be able to do anything. Like if I had to come to work today, I could come but I wouldn't be able to think enough, or talk to a client, because I just wouldn't be able to deal with it." And that - And so every kind of couple of days when I knew it was coming up, that I had to go to a doctor and get a sick note, and then talk to work about it, I would get really, really stressed, and really, really worried. And that's why I quit my job in the end, because I just thought I can't deal with like the constantly thinking about it, and wondering how they're doing without me, and. 

Yeah. And kind of almost needing to show to the doctor that I wasn't well enough to go back to work, when actually looking back it was obvious to any person that saw me that I wasn't ready. But in my head, I was always panicking that they were going to go, "No, no - you should be back at work now, just go and do it." Because I knew I couldn't handle it.

Lucy describes a colleague at work helping her to go to her GP when she was experiencing psychosis and having suicidal thoughts.

You know, working at quite a high-paced stressful job and doing fine. And intelligent and stuff. And then overnight it seemed to other people, I just kind of lost it. I think I had no kind of perception of what, how - what I was saying, how it was going to affect other people. So I would say things, like horrible things that I'd think in my head. Normally you would never say that to other people. But I just saying anything, because I just didn't know that it would upset them.

So at what point did you think about kind of getting help from somewhere, or support?

In June, one of my colleagues took me to the GP. Kind of forced me into it, like they kind of stood outside until I went. And [laugh] made me sign all the forms and stuff [um], to register with one. And then the GP - at first, I kind of said, "Oh, I think I've got a problem with like low moods and suicidal thoughts." And then it was months before I got any kind of idea that it might be psychosis. I think July I got, was put on antipsychotic medication. So it was quite a while of just kind of them thinking 'oh, it's just a standard case of depression, we'll just give her antidepressants and she'll be fine within a few months of having it'.

Lucy has a large friendship group. Now she can’t work she has less money for socialising and doesn’t feel like going out. She prefers having a friend over to her house.

And I find big groups very difficult now. And my friendship group is really big. So it does kind of restrict a bit what I can do. Because actually a lot of the time what I want is for a friend to just come and sit with me. But what other people want to be doing is going out, and just kind of enjoying themselves, and. And also I think the lack of income kind of comes into it. Because if you're out for a meal, and then everyone else is there just enjoying yourselves, and you're thinking 'that's, you know, a fifth of my income this week if I have dinner with these people', it does kind of change how you feel about going out.

And then some days it's just too much effort to kind of get up and have a shower and get out of the house, and get to places on time. So I'm finding that people have to kind of force me along. So there's a couple of friends that really feel quite strongly that it's good for me to get out of the house and be around people, so I'll kind of say "Oh no, I don't think I'll come." And they'll go, "Are you sure?" And then I'll say "Yeah, yeah - I'm sure I don't want to come." And then they'll turn up at my house anyway, and be like "Well, you're coming." [Laugh]. So "I'm here now, you've got to come." 

Although Lucy thinks it is possible to “get on with life” with psychosis, she worries about people noticing her self-harm scars and feels less motivated to do things

Do you see a time in the future where things will change?

When I have better days, I kind of do. I think - I don't think it will go away completely. But I think - I think it's possible to kind of get on with life to a certain extent, and still have symptoms. But I, I do find it really difficult to, to imagine that things are going to turn out okay. It's just little things, like whatever happens there's always going to be scars on my arms. All over, actually. So it's quite difficult. I'm always thinking 'oh, if I went for a job interview - okay, so maybe I'd wear long sleeves to the job interview and then at what stage are they going to see my arms and realise that's happened'. And it's quite - thinking of life, always having to cover up. And always having like a gap - a year of my life that I wouldn't quite be able to explain to anyone, on my CV. And there's little things like that, that make it quite hard to look ahead. 

And thinking back to say two years ago, what's changed about you, as a person? And what's stayed the same?

Think I'm a lot less passionate about things now. So like two years ago I was really like eager for stuff in the church, and I was involved in everything, and I was running these aid trips to France, to help refugees out there. And going out giving stuff to homeless people every other week, to - sort of constantly organising running things. Really busy. And now, that's - it's not even - It's not so much tiredness, it's just not really caring enough to do anything about anything, really. It's just, yeah. Just a complete lack of motivation for getting on with stuff. I think I feel a lot less intelligent now than I used to. I was always like - I was always the smart one in my family, I was always the smart one in my friends, and that was quite a big thing I identified with, was being smart. And I think I've lost a lot of that. And it could be permanent. So, that's quite a hard thing to come to terms with.

Lucy didn’t think that ‘distress tolerance’ sounded like a good idea. She wanted to feel better, not to “settle for this being okay”.

So, sort of confidence, that kind of thing?

Yeah. Yeah.

And is there anyone there to sort of support you, to get that back? Has anyone talked about building confidence?

My support worker does a bit. But I think at the moment I'm just so constantly having crises that it's kind of just - I can't remember what that phrase is, where the - always just blowing out fires, rather than just dealing with -

Fire-fighting.

Yeah. But they - Yeah, I don't think there's been much work to try and deal with things on a long term thing, it's just getting me through like each week. 

And do people talk about recovery with you?

I felt like at the start they did, and they kind of talked about how people can get completely better. And now they kind of just talk about like distress tolerance, and I'm kind of like, "I don't want to tolerate this, I want to feel better." And they talk about, you know, learning skills to deal with it. And, yeah. In fact there's a, there's a little poster up in my local like kind of branch of the CMHT, where it says 'recovery is different things to everyone, and recovery isn't necessarily absence of symptoms, but just learning how to deal with them'. And to me, that's kind of a bit - I don't like that, because I think well these symptoms aren't really something that you should just learn to deal with. Like I don't want to kind of just settle for this being okay. Like I want to feel better. 

Discussing treatment options and allowing young people to be involved in decisions about their care can make a huge difference. Lucy says being asked her opinion made her feel the treatment was more specific to her.

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. 

When she has been unwell Lucy has texted friends telling them to ‘stay away’ and she understands it can be difficult for friends to know what to do. She thinks it helps if friends find ways to show that they care on a regular basis.

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.

Lucy had been working full time before her first experience of psychosis and had her own flat. Because of this she wasn’t entitled to housing benefit so had to rely on support from her parents, or face losing her home.

It was - It would have been worse for me, except that my parents have been able to support me. But I bought a house a year before I started experiencing psychosis, or a flat. And because of - Because I owned a flat, most kind of benefit options were kind of closed to me. Because if you're in rented accommodation you can get housing association help. But if you're in your own place, there's very little help available. So if my parents hadn't have been able to help me, I think I would have had to sell my flat. And then wouldn't have got benefits because I'd have had too much money from the deposit that I'd paid, to actually receive anything. So I would have, you know, put all the years and years of work and a bit of inheritance that I'd put into my flat, would have just gone straight out into just living expenses. 

So that would have been really difficult, except that my parents were able to help. But I found like the services designed to kind of teach you about benefits and things is not that great. So I went to No Limits, which is like a charity that helps people under 25 with issues. And I said to them, "I don't know how I'm going to pay my mortgage next month, because I can't work, my benefits haven't started yet." Or "I don't know what to apply for." And that kind of thing. And they gave me a leaflet on homelessness [laugh]. And I thought I still own a house, and you're already saying 'well, maybe you'll become homeless, so here's a leaflet about what to do if you do'. And I thought surely there's an intervention before that stage? Like you shouldn't be encouraging just ending up on the streets when there must be another way? And about - I think it was six months after I was off work, my benefits went up by - went up from like £57 a week to £125 a week. So it's kind of enough to live on now. But for those six months, they would have just - like I couldn't have possibly lived on that amount. 

And was that just about applying for the right thing in the right way, or?

I think it was to do with the - the rate of benefits just goes up once you've been off for a long time, I guess they think 'okay, you're a long term ill person, and we'll give you some more'. Which I assume is how it works, but. I didn't kind of know that. So when I got a letter through saying 'your benefits are now this much a month', I was like 'oh, that's nice' [laugh]. But like I had no idea. And I'd been like really panicking about how I was going to like live the rest of my life on £57 a week. You know, because maybe I'll never be able to get back to work. But, yeah. A few months after, it went up and it was okay.