Psychosis (young people)
Working and psychosis
A few people we spoke to were employed, or were doing training. Some were working in the field of mental health, often in peer support, while others were working in another specialist area that interested them (for example Green Lettuce worked in IT and Joseph was a gardener). Many had done, or were considering, volunteering.
Andrew X is an elected councillor and does a lot of work around mental health. He finds it “therapeutic” and thinks his experiences of the mental health system have prepared him well for politics.
Andrew X is an elected councillor and does a lot of work around mental health. He finds it “therapeutic” and thinks his experiences of the mental health system have prepared him well for politics.
And you do so you've got your political work.
Yes, and I got, I got elected whilst still being in and out of [local area’s] Mental Health Unit. And don't ask how, but I'll always remember this. I was on the doorstep with someone and I was having a conversation with them about ‘this is what I'm standing for’ and you know, and ‘this what I'm passionate about’. And he looked at me and he sort of said, ''You're crazy.'' And I sort of took a step back and went, ''Yeah, I am.'' And then he shook my hand and said, ''You've got my vote.'' [Laughs]. And I think I became- mental health, being in mental health services prepared me for politics. 'Cause in mental health services you have to spin to get what you want and need. You know, you have to say certain things to certain people to get what you need, 'cause the system is so bureaucratic. You understand people a lot better as well when you're in mental health services. And I just, I don't know how, but it just really fit, really fit well. I suppose some people get like art, some people like music, you know. For me, politics is a way of expressing my experiences. And I'm okay at being articulate enough to do that. So, it just fit in well.
Most people wanted to work and said that being “active” was important, as keeping their mind busy could help them manage some psychotic experiences such as voice hearing: Joe explained “boredom is not good for me… doing something that I hate is better than sitting at home on my own in the quiet not doing anything. Because that way, quite literally, madness lies”. Lucy felt that her “identity was in work, and being good at [her] job”. But not everyone wanted to work. Chapman isn’t legally permitted to work because his application for asylum is still being processed, but says that anyway he would want to wait until he “gets better”.
Some recognised that their mental health experiences added to what they could offer at work.
Nikki is training to be a mental health nurse. She feels that her own mental health experiences mean she can really empathise with people who are unwell.
Nikki is training to be a mental health nurse. She feels that her own mental health experiences mean she can really empathise with people who are unwell.
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. Andrew X tells employers about the benefits of employing someone with a mental illness and the considerations they might need to make.
Andrew X tells employers about the benefits of employing someone with a mental illness and the considerations they might need to make.
And sometimes it's as simple as just like, you know, giving them some time out, being flexible with their working hours. You know, particularly if someone's on medication, afternoons are so much better than morning, because of what I spoke about earlier, you’re fighting the chemicals. And a lot of people, you know, work better towards the evening. So being flexible towards that. As I said, being able to talk also remembering that you're not their mental health nurse. So if they need support, encourage them to get that professional support and working with them to get it. You know, 'cause you are not gonna fix 'em overnight. But you've got such, as an employer you've got an opportunity to transform someone's life. You've got an opportunity to be a real change. And you've got an opportunity to just really capture and harness a creative and energetic person. But you need to just be a bit flexible. You need to be a bit understanding that it's not gonna be easy. But the rewards for you as an organisation that I would argue are gonna be quite substantial. It's not really, and you- as an employee it's not always gonna be perfect. But I think it just says a lot about your organisation if you're able to be responsive to someone's acute mental health needs. You'd be responsible if they were in a wheelchair. Be quite clear, if they're in a wheelchair what you'd need to do. And it's not gonna cost you a fortune to be flexible with your working hours to be flexible—and have those conversations beforehand. Have those honest conversations beforehand. Don't be afraid of that. And I think that's really valuable – be human about it.
Psychosis had started for a few people while they were in employment.
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.
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.
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.For Dominic, who was working during a bad psychotic experience, going back to work is daunting. He plans to do some peer work as a volunteer to gain confidence again.
For Dominic, who was working during a bad psychotic experience, going back to work is daunting. He plans to do some peer work as a volunteer to gain confidence again.
I was a volatile person. But now there's like a big stigma around it in my head, where if I go to work-, because if I go to work it's gonna, it's gonna be into something I wanna do and what if I fail? But it's not just a basic, what if I fail it's imagining every possibility of failure. And each one seems more likely than the last and it's terrifying. But the way I'm handling that is volunteering. I’m starting very soon when I'm gonna be helping other mental health experiences with just day to day life, getting out and socialising and helping them become a bit more productive and more confident. I am so excited about that. Also, also very scared, because even that I could fail at, and this is sort of my test run. If I can do this, all the pressures is just gonna be- then maybe work is, isn’t an impossibility any more, you know. But what I would say in terms of how it affects, how psychosis affects me, it's okay.
Finding employment after, or in the context of ongoing psychotic experiences, could be challenging. Some people experienced a long and difficult processes applying for jobs. Joe put in fifty applications before he finally got his job as a care worker. Some people had been given help. Green Lettuce had support from his “advisor” when he was looking for a job in the IT sector. Although he has spent “loads of time looking” he says there isn’t much in his area and he has now decided to set himself up as self-employed web designer.
Dominic receives help from his council’s Employment Support team and describes what they are able to do.
Dominic receives help from his council’s Employment Support team and describes what they are able to do.
Emily had bad experiences working in a hotel, shop and bank, where people didn’t understand her mental health needs. She says she would like to work in mental health, where she would be around people who understand.
Emily had bad experiences working in a hotel, shop and bank, where people didn’t understand her mental health needs. She says she would like to work in mental health, where she would be around people who understand.
And do you think the future with work how would you go about managing that, so would, would you talk about your mental health to the people that were employing you or working with you?
Yeah, definitely. I would always explain it now, because then at least they know and then if, I mean, you can tell how they respond and whether you want to work there or not if you say you've got mental health problems and they go, okay, you know, we can do this to help you and that then it's fine. If they sort of go, oh well, you know, what sort of problems and they don't really understand that you know it's probably not the best place for you to work. But ideally, I would like to work in mental health myself, because then, you know, you are around people who understand it and they are not gonna go, you were off sick yesterday.
When people found a job, there could be a difficult decision about whether and how to discuss their mental health with their new employer. Whether or not an employer knew about the person’s mental health experience and how they responded to it was critical in shaping people’s experiences of work.
Some people found it difficult to let others at work know just how unwell they felt because there were no obvious outward signs that they were unwell. Luke says mental health is “something that’s invisible” and Sameeha believes people think “you don’t look it, so how could you possibly be ill”. Luke thinks there is a general belief that if someone’s broken their leg and has to work from home for three weeks, it's fine. But if he can't get out of bed in the morning because he’s depressed, people don’t consider that to be a justifiable reason.
Working by herself in a hotel in housekeeping was fine for Emily but when she was asked to work on reception she worried about being able to concentrate because of her voices. When she took time off her co-workers thought she was just being lazy.
Working by herself in a hotel in housekeeping was fine for Emily but when she was asked to work on reception she worried about being able to concentrate because of her voices. When she took time off her co-workers thought she was just being lazy.
Joe told someone at work who he liked that he hears voices, and they made sure support was available while he was on his shifts in a cancer care unit. He thinks it’s good to be “brutally honest” rather than letting them find out some other way.
Joe told someone at work who he liked that he hears voices, and they made sure support was available while he was on his shifts in a cancer care unit. He thinks it’s good to be “brutally honest” rather than letting them find out some other way.
Just told them.
So, verbally?
Yeah. I just
At the beginning, or?
Yeah, I went and spoke to someone, because - Again, it's - If [sigh]. And this – I, and I realise the irony of this word, this does sound a bit paranoid. Saying if you - if you go into a job and say "I hear voices sometimes, I might have to take a day off with it occasionally,"
Right.
People are going to probably have a lot less of a problem with it, than if like someone finds out from something you've put on the internet –
Okay.
And say - and the rumour goes round the office and everyone says [whispering – “Did you hear about [so and so]?”]. Yeah. And, which I think possibly people are - might do, so.
Yeah. Although, yeah, they say - well, a lot of people hear voices [laugh].
Yeah.
But, yeah.
But you know, people hate - people hate about other people the things they see in themselves, so.
Right, okay. So, did you tell HR then, or? I mean, did you do it in a formal kind of way?
No, I just did it - went and told someone.
A manager or someone?
Yeah, someone I actually liked and trusted. And said "Okay, well -." And the same thing happened with the current job. I told someone, and they said "Okay, well these people need to know, because there need to be these people on the shift at one time." Yeah.
Yeah. Okay. Cool. So is that something you'd advise to other people? That it's worth letting your work know, and?
I think if you can deal with the fact that people know. I think one of the biggest problems with this is people somehow feel ashamed. I think it's with every medical condition, not just mental stuff. People think they're going to be - people think people [sigh] - People think other people are going to think they're weaker for it. When literally everyone on earth has something. And – If, if you, if you can get to a place in your own head where you can deal with people knowing, honesty is the best policy I think. Because if you are - like me - quite aggressively brutally honest about it, then people are not going to think it's as weird as TV would have them believe.Although her EIP worker advised her not to tell her employer about her experiences, Hannah wrote her diagnosis and medication on her medical questionnaire. Her managers were very supportive.
Although her EIP worker advised her not to tell her employer about her experiences, Hannah wrote her diagnosis and medication on her medical questionnaire. Her managers were very supportive.
That's amazing. How did you kind of go—people listening to all of it looking at the website might be worried about, do I tell work or how do I tell them.
Oh yeah. That's really interesting, because when I was speaking to my care coordinator with EIP they actually told me not to tell them. I was like, what do you mean? I have to tell them. What if something happens and then they let, they say I can't keep my job, 'cause they don't know what's happening. But they said, the stigma is still there. So you wouldn't want them to think that you're incapable so I can understand why people would be reluctant to tell people. But I think it was a good choice to tell them. So, I think, I got given a medical form, medical questionnaire and you have to put down if you have any conditions or anything or medication. So I just put, popped it down on there and so I didn't really talk to them too much about it.
And that just went on your file. And did anybody at work raise it or ask you, you know, about it?
Yeah, I got pulled aside by my manager to talk about it and they were just really great. Said, if there's anything they can do let them know. They are there to support me and they wanna make sure I'm okay.
And how much info did you put on that sheet. So did you put a lot or did you just say, psychosis.
Yeah, I just put psychosis and depression and medication that I'm on.
Okay. Well done you. Do sort of colleagues and friends at work, do they know about it or was it just the management that you told?
Just the management, yeah.Having a good relationship with your manager and not having to hide how you are feeling was important for Becky. She works full time and if she needs to take time off for therapy she knows no one is going to “judge” her.
Having a good relationship with your manager and not having to hide how you are feeling was important for Becky. She works full time and if she needs to take time off for therapy she knows no one is going to “judge” her.
Yes, completely,
Has that been—do you think it's important to be working as well?
I do think it is. I had a couple of months off. And, it's not helpful to sit. You've got more time to yourself. More time to try and get through the day and you end up just counting the minutes until you can go to bed again. It's no life. My manager and all of my sort of colleagues have been absolutely amazing and I really couldn't have asked for any more. But it's so important to have that understanding like if I need time off for therapy, I can have it. And I don’t have to feel like I have to hide who I am, because they can see it and they understand it. It is so helpful. If I want to go and cry at work, no-one's gonna judge me for it. They are not gonna think any less of me. 'Cause we all have bad times. And I think that's important like, you never know what somebody else is going through, so you've just gotta be, that's just kind, just in case somebody is having a bad day. Lucy describes a colleague at work helping her to go to her GP when she was experiencing psychosis and having suicidal thoughts.
Lucy describes a colleague at work helping her to go to her GP when she was experiencing psychosis and having suicidal thoughts.
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'.
Many people had volunteered as peer support workers and mentors for charities and mental health service providers. Fran works in a centre where they train mental health staff and Tariq volunteers at his local hospital where he “befriends” people who are unwell. Andrew Z volunteers with the EIP team that supports him with his own mental health at the local hospital and is helping to set up a mentoring scheme. Barry said volunteering had many benefits: gaining new skills, getting a reference for future work, and it could provide opportunities to make new friends.
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