Many people had their education or working lives disrupted by developing mental health problems. People described their experiences at school, which were very mixed. Stress caused by preparing for exams seemed to lead to a deterioration in people’s mental health; for others it was just the first time they had noticed something wasn’t quite right (see also ‘Onset of mental distress’).
Tom is an artist and musician, single and has no children. Ethnic background' White English
Well, I was doing I was at school doing my ‘O’ levels and then ‘A’ levels so I, you know, from the age of sixteen seventeen eighteen and then I’d left school at eighteen and had and between then and my diagnosis and well, I actually had contact with mental health services about six months or so before I was diagnosed. And so between leaving school at eighteen and having contact with mental health services there was a period of about two, two and a bit years. And life, well, the thing the thing about schizophrenia, which I suffer from, there’s a long period of previous to schizophrenia where before the sort the, you get the florid symptoms, which is the voices etcetera. You usually get usually go through quite a long period of depression or where things just aren’t quite right, you know, in your life. So I went from being a model student in my O’ levels from, that was sort of the high water mark when I was about sixteen. Going, I just went downhill there. So I was quite a bad student really in my A’ levels. I’d, non-attendance, played truant a lot and I was even late for one of my own A’ levels and did very little work of any kind simply because I couldn’t. I was, you know, because, you know, it I think it does take, you know, years beforehand, you know, things aren’t quite right, you know. So things were difficult before I had contact with mental health services, yeah.
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Annie is a student, single and has no children. Ethnic background' White British.
What was life like before you had any contact with mental health services?
Pretty normal really. Well very normal. I had a very normal childhood. Probably quite privileged in some ways and you know, nice, posh school [laughs]. You know, I had a sister, I was very close to Mum and Dad, brought up, you know, no divorce. Just normal. Academically succeeding. Yes. Very, very normal really. Very normal. Probably yes, yes, boringly normal [laughs].
I’m sure it wasn’t.
So what happened when you were in your teens?
Yes, well as I got to sort of the sixth form really things, and initially things were just sort of slipping a little bit. I kind of did four ‘A’ levels and then it was a drop down to three and then kind of was allowed to go home a bit earlier than others may be. Kind of just sort of, and not going to parties. I remember that being quite a bit thing. Not going to like, being invited to all these eighteenth birthday parties and not going. Because I just didn’t feel particularly well, sociable, myself really. So I kind of yes, I kind of just things were slipping really, if I’m honest and just sort of, but sort of not massive slips. Just lots of sort of, lots of little slips, if that makes any sense. You know, not kind of, not anything massive, but if you look back on it, lots of things were going, like my Saturday job, like the four ‘A’ levels down to three A levels. Like kind of work university I was thinking for, you know, aspirations were sort of slipping, you know, I was sort of heading for, you know, pretty good universities and therefore, you know, then starting to look at lesser universities and kind of not being sociable, that was the main thing as well, kind of giving up on going to parties and giving up sort of hanging out with my friends and stuff. So yes, and then it just gradually escalated really.
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Nada does voluntary work, is single and has no children. Ethnic background' British Indian
I don’t think things really improved at school or anything ,probably, you know, in a sense got worse and stuff but I made it through like somehow and I was a nightmare for my teachers I think I guess the pattern again, had already set in by that point and when I was sort of younger I was really quite hard working and stuff but by about 13/14 that just completely got shattered, you know, I just lost interest in sort of doing these things for myself or kind of motivation just went and I didn’t see the point and I was always so distracted and so absorbed and so worried and conscious about what was going to happen later or what was happening, that I wasn’t able to concentrate really at school or take very much in either, you know, you know, I don’t know my head was always elsewhere kind of thing, you know. But I guess when it came down to it I had a reasonably good memory so I would just kind of learn like just cram memorising stuff I suppose cram that in and stuff and somehow kind of like short term memory like you know, like I could sort of do it the night beforehand I would be able to remember it for the next day maybe but then it would go kind of thing and I’d off load it but it was just enough to have for me to kind of get by I suppose . I think that deteriorated with my excessive smoking and stuff but yes well right so
Whilst some people did well at school and didn’t experience many problems, several people spoke about being bullied at school or having unrecognised learning difficulties that caused them problems (see also ‘Views about causes and traumatic experiences’ and ‘Childhood and life before diagnosis’). Many people first developed more noticeable mental health difficulties whilst they were at sixth form or college (ages 16-18) or whilst at university. However many also felt that university was a happy time when they felt ‘freer’ or ‘more like themselves’. Some people found that their behaviour spiralled out of control without close family noticing.
Janey is a mental health trainer, married and living with her husband. Ethnic Background' White British.
I was very lucky, I mean I was very unlucky. I didn’t get the university places I wanted. Went through clearing and got in Sussex. And that was, that was brilliant, because everyone there, this is at the time when, seriously communist university. It had 43 conservatives on the Campus and we knew who they all were. And I could be as wacky as I wanted, nobody cared. Nobody really made me want, you know, there weren’t things that, expectations that I was having to live up. And I already sought to have failed my A levels by having to through clearing in the first place. So having done that for the first time in my life, failed everything, it then opened things out. I could be just what I wanted which was great. So I spent a lot of time playing politics, a lot of, a lot of time socialising and doing really crazy weird things. Hung out with the politicos. Went out with someone who was a cross dresser. So we both had mini skirts on all the time.
And got a biology degree in the end. I was ill, actually that’s the first time I can really remember, being psychiatrically ill in the way that I am these days, at the end of my first year at university. I had tried to kill myself. Two friends had decided that I needed to see the Campus doctor. So they phoned him, and he argu… he was arguing and arguing with me that either I came to the sick bay and took some medication, saw a psychiatrist the next day or that they would section me up to [name of hospital]. Which was one of the big psychiatric institutions at the time. And so I went into the sick bay. Saw the psychiatrist the next morning. I managed to persuade him that there was absolutely nothing wrong with me, even though I by this time, and I knew I was hearing voices. And got out again. So …
Some people didn’t work after finishing school as they didn’t feel well enough or there weren’t the jobs available. However, many other people had worked full-time before becoming unwell. Whilst some people felt that the stress of their jobs contributed to their feeling unwell, others felt unable to work because of the side-effects of medication such as sedation.
Ron is a trainer and consultant, having worked in the field of mental health for several years. He is married with seven children. Ethnic background' White British.
And I didn’t like relationships because people either abused you [laughs] or died on you so I just didn’t do relationships and even today I can count the number of friends on one hand, although I’ve got lots of people I know, the people that I let through that, personal space are very few and, people have to earn that so I guess before I was diagnosed I was, almost setting myself up for it, by not having that social interaction, not, not doing that, I lived for work. I started my life in a very Marxist family, quite left wing, quite a lot of social conscience, all those kind of things, and in the Eighties I became a child of Thatcher because that idea of, the not having any society worked for me, so that actually appealed to me her policies never appealed to me but the, the idea of the cult of the individual really appealed to me and I worked in the City of London, doing in the Finance Sector and earning quite a nice living , part of those that, that, I guess I was a bit of a Yuppie, and quite enjoyed it, and I was good at my job I did buying on Futures and things like that and I was quite successful and I was pretty good at guessing the market. So that, so my life was a whole load of contradictions, I had a, quite a successful career and yet at the same time had, nothing. I had the trappings of prosperity but not, any peace of mind I didn’t, I didn’t go out on Friday nights, I didn’t meet up with everybody after work or any of that kind of thing, I lived and breathed the job. So, so if anybody was setting them self up I guess it was myself at that stage
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Robert used to be a labourer, is living with his partner and had one child Ethnic background' White English
Robert' But I suppose looking back at it now. I mean to say, I don’t know, I suppose I’m, when did that happen, 95, ten it must be going back fifteen twenty years now. But I can look back and it now like, that’s probably where my problems started. Like with the confusion of everything like, you know, and it all got messed up in my mind as well, a lot of it.
What type of things got messed up?
Robert' Oh God everything. Some of the simplest things, man. You know, I’d get up in the morning like, you know and have your day planned out and truth of it I just couldn’t be arsed. I couldn’t be bothered, just to cope with everyday things. You know, you can go, I don’t know, getting a job or signing on and that. It’s just too much trouble. Just too much aggravation. I just couldn’t cope with it. And of course, I mean to say, you get a job and you get these niggly little things at work, you know, that people are meant to care about or worry about, you know, oh this isn’t done right, or that isn’t done right. And I just don’t, didn’t have the patience or the effort or the will to even bother to try. I lost a couple, I must admit I lost a couple of jobs because I just couldn’t, I just couldn’t do it. Like, you know. I had some bloke stood there, shouting at me, sort of so far away from me, like, you know, because I’m meant to be worried about what he’s doing at work like. You know, I just decked to be truthful. Petty garbage. Hmm. Got me into a lot of trouble. But now I look back on it and that’s probably the start of my mental health issues. Hindsight is a wonderful thing isn’t it?
It wasn’t until I talked to [name of psychiatrist] from the, what was she [name of partner] can you remember? What she was. What [name] Unit?
Robert' That’s it isn’t it? Which is a mental health thing in [city]. But I only got to see her a couple of times. And it wasn’t until I sat down and talked to her that I looked back on it and realised what had been going on. And I sort of put two and two together and worked things out. And now, I suppose once I, once I realised what was happening in my head. Once I accepted it, it made it a bit easier to deal with. Does that make sense?
Most people we talked to could work in the long run, despite being affected by severe mental distress. However the type of work that people did often changed after an episode of psychosis. For some people getting back to work felt important to their recovery. However, work was not always possible - or even desirable - for some people (see also ‘Recovery’). Several of the people we spoke to decided to work or volunteer in the mental health field in some way in order to help others.
Many people we spoke to now worked with service user/advocacy organisations such as ‘Rethink’ or the Highland User Group (HUG) and got a lot out of either doing paid work or volunteering. Ron now runs a consultancy company ‘Working to Recovery’ that trains people in mental health recovery.
Gary is a volunteer, is single and has no children. Ethnic background' White Scottish.
When I came down here last year, I got in touch with mental health people called [place name] which is just like in the river and we did a talk there, and there was [name] us like, and they said, “Would you like to come along to our meetings and stuff as a volunteer?” And we said, “Yes, fine, I’ve got a lot of time on my hands, Jesus.” So I volunteered like one day a week and sometimes I go round schools. And I talk on mental health issues.
We when we go round schools, like usually, there’s usually at least three of us, so we give like a wide a range of mental health issues, like we talk about our experiences etc. you know, but we also say, “Look …” Say there’s a class of 30, we often say, “Look almost a third of you are going to experience some form of mental health at some point.” And one thing I say to them, “Is look, I was in the Army and I know, I’ve seen active action. Don’t be scared. Don’t be scared like to come forward like and see a doctor.” So that’s one thing I say.
And how have you found it doing work with HUG?
Good. Good. Very good actually. it’s one of the most positive aspects of my life. Being able to like make up for so many years, like I was involved in this, like you know, I didn’t, I knew there was something wrong with me. I didn’t know what was wrong and but in the last couple of years, like now, I’m just so much more positive about my mental health and okay I’ve got a problem and my psychiatrist says, he told me straight, “You’re never going to be cured. But what we can do is help you manage it better if possible, but you’re never going to be cured.” So I know I’ve got this for life. So it’s very positive for me like to go around places like and say like now okay, it just is.
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Kirsty is a volunteer with Rethink and a local housing organisation; she is single with no children. Ethnic background' White British.
How did you get involved with Rethink?
I think it was just reading the newsletter and they said that they were interested, you know, in I think it was the way the government’s change things. They want things to be, not exactly user led, but for the, any sort of client, patient, tenant, whatever, to be involved in the services that they receive and that sort of thing. So .. power to the people, you know, and that. So I just responded to that. I responded to their request. I thought yes, I can do. Yes, I’ll give a go. And that. And I wasn’t always reliable and that. But quite a lot of the time I put a fair amount of effort in, and like I say, as I can tell it was appreciated. And certain the stuff I do now, the, the service involvement manager she’s extremely motivating. Yes.
And what does she motivate you to do?
What was it, take on extra tasks and all this sort of thing, which is like, I mean, I don’t always feel it within me, that my opinion is valid, you know, or that, you know, sometimes I think well I’m, you know, I’m out of place or whatever, you know, imposter almost. But, you know, I had a phone conversation with her a while back and she was like, “Yes, no, you know, you seem to be particularly good at this or whatever, and Christ, yes. I didn’t realise I had any talents left. You know, so yeah.
Well good on her.
Yes. A lot of it is the people that you come into contact with. I mean I worked in a charity shop for a couple of months a couple of years ago over the Christmas period, and I’d been out, I’ve never worked in clothing retail or anything like that. And I’ve been out of retail for, you know, so many years, fifteen years or whatever. And I know it’s only a charity shop, but I really didn’t think I could cut the mustard and that. So, I said yes, may be I’ll do a little bit, a day a week or something like this. And the manager there was so good. So good a manager, such a good character and everything. And attitude and that, that I was doing any hours that she was prepared to give me sort of thing, you know. And as long, you know, as long as I could get there, I was quite happy to do the work and it was good, yes, good for my confidence and self-worth and all that sort of thing, you know, yes.
Some people found that the job they had before they became unwell was too stressful or not rewarding enough. For instance, a few people had been in the army and said the mental stress of this kind of work was particularly difficult for them. Naveed said that his boss worked him very hard, knowing that he wanted to save money so his wife could join him from Pakistan. Cat hoped that there wouldn’t be increasing pressure for her to go back to work as she felt she couldn’t manage it.
Nevertheless, when people felt unable to work this sometimes contributed to negative feelings about their self-worth, and many did not want to depend on state benefits. Often they were signed off by a doctor when they were diagnosed, and for a few people this felt like the doctor was expressing pessimism about their prospects of recovery. Some people said they tried to go back to work and their normal routine ‘too early’ and became unwell again.
People who felt unable to do paid or voluntary work talked about the importance of therapeutic activities such as education, art, sculpture, or gardening to increase their well-being.
Gaining new skills and confidence
Some people who had left school without any qualifications, or who hadn’t been to university the first time around, often wanted to do a degree course or take part in further study.
Andrew is unemployed, works with the service user movements, single with no children. Ethnic background' White British
And I’ve managed to pass a BA Honours with the Open University and I did an MA at Brighton University in 1998. I participated in service user committees which were the order of the day when community care was introduced. We had user involvement, and part of the user involvement scheme of things was that you would have a user charter for day centres or places where care took place and you would have an elected user committee with an elected chair person. I was chair person of the user committee at our day centre for a while. I found that very empowering. Those kind of the developments came along at the same time as I was doing a module for the Open University for my BA, and that module was called ‘Democratic Government in Politics’. So it was very helpful to do the module on Democratic Government in Politics, when issues like legitimacy, accountability, and those kind of the things were the order of the day when community care was first implemented. The 1990 Community Care Act, its full title was the 1990 NHS and Community Care Act. That legislated community care and that act was fully implemented from 1992 onwards. And we had user committees and we had a relationship with the management and with our carers that was different from the relationship in the asylums. We were more equal partners and the best managers and there were some of them round here, would say that they got their legitimacy, and they got, and their accountability from their relationship, their partnership with the user committees and this was all democratically done and it helped me to be doing democratic politics with the Open University, the same time that user committees and things were being established.
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David does volunteer work, and is single with no children. Ethnic background' White British.
Going into education has really helped. It’s getting the support within my college and university may not be the best way forward and stuff because sometimes it’s pointless and it’s good. It’s definitely learning and be able to see things from different perspectives. Training courses as well. And at the moment doing NLP and I love it. It’s brilliant. It’s given me a whole new perspective and things. It’s like doing the Peer Support Worker training, mentor training, that’s helped me a lot as well. It’s given me a different perspective on things. And doing my degree in Applied Psychology gave me a huge perspective on both myself and people around me and the people in the world and I enjoyed things like sociology in that as well. It’s like human sciences. So they’re about people and when you can start looking at how people work and how things are constructed like society and how views and beliefs are constructive you can take a slightly different approach on where you are in yourself and may be come to understand why people don’t understand or may be they’re afraid and the reasons why they sort of distance themselves, and also some reasons why you might end up feeling the way you do feel.
However, doing further education wasn’t for everyone. Gary wanted to do an Open University degree but his psychiatrist didn’t think he was well enough to attend college, and another tried to do a degree when he felt quite ‘high’ and dropped out after a few weeks. Simon had done various different courses including gardening, sculpture, poetry and creative writing, and got a lot out of them.