People talked about the ‘ups and downs’ of daily life. Anna was unsure about what the future held because, she said, living with a serious mental health problem was ‘such a roller coaster’. Most people spoke about coping with their severe distress, or finding relief through sports, music, involvement with animals, religion or spirituality, recreational drugs, or other means (see Self-help strategies). At other times they could struggle with the demands of daily life and begin to feel unwell (see First becoming unwell). You can also read more about the support people had with everyday life decisions here: Support in life decisions.
Brendan talked about having ‘good periods’, but said he would then begin to feel unwell again.
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It’s easy to look, I look back at that time and sort of see it as a bad time, but things would go up and down, you know. I’d have good periods of time where I would work and where my mental health wasn’t an issue. I was in work and I was challenging myself and then things would go downhill and I would sort of lose all this sense of, that I could deal with things and that I could manage things. And so, you know, I would think about suicide and…
Yeah, so over this point in my life that we ended up, you know, we’d always wanted to have kids and we did have a child – a boy – and things were good for a while. She took a year off work and I was working and even though at times I was struggling with my mental health, I guess I felt a real sense of purpose and that I was, you know, like I had to do this to earn money, to support our new, to support the family.
And so I did that, would do that and, you know, that was all going fine and, you know, time passes, which it does, and I started to get unwell again. I wasn’t going to work, I was still seeing the same psychiatrist, was on medication still.
Although most people had worked in paid employment at some point in their lives, many found it was difficult to maintain continuous employment (see Experiences of Work). For some, this was because of the ‘stress of work’ but for others it was the unpredictability of their severe distress and how they felt as a result. That, for many, made getting or maintaining work difficult. Brendan enjoyed working as a drug and alcohol counsellor for people with mental health issues but found that it was difficult listening to people whose stories were similar to his own. When he noticed that he was starting to ‘slip a bit’ and felt that he couldn’t give people the support they needed, he decided to resign. Jenny struggled to get a job she enjoyed because she ‘would get lost on the way to the interview ‘or, alternatively, ‘didn’t have the confidence to go’. Luana found the workplace ‘triggered’ her feelings of paranoia and she felt uncomfortable ‘being around people in that close environment and having to perform to a certain standard’. Allen described being able to work part-time but said it was important not to ‘overdo it’, to have a long weekend off, and, for the time being, not work more than two days in a row.
Although
Evan has worked in many different industries, he never held a job for what considered to be a long time.
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There I was treated with medication – very sedative medication and then it was reduced to maintenance level. And then I got out in the community and gradually became a community person, if you like, with the other community members in the community. I tried to get back to work on numerous occasions, sustaining employment was the problem. I could get a job, there was no problem in getting work. The problem was sustaining a job for a long term period of time. And so I managed to get into a number of different industries, if you like, of employment.
I got into the finance industry, the retail industry, the real estate industry, the fashion industry, the funeral industry and also the, let me see what other industry? Oh so many industries I got into, different industries, diverse variety of employments I had. They were short term though, and that was the problem though. I couldn’t sustain employment for a long time.
Charlie has been employed in the past, but now sees her main job as looking after herself.
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So, you know, I’ve done bits and pieces of things. I’ve washed cars, I’ve done some clerical. I do little bits and pieces as it comes, you know. But in terms of working, even casual, it, it makes me so anxious. I can’t, yeah, I’m not up for it. I would if I could, but I’m not up for it. My job now is to keep myself well, so, and that’s what I do every day.
Could you tell me how you go about that?
Well, I know a shower makes you feel really good in the morning. That makes a difference to the day. Making sure I eat enough or not too much. I get out and about every day, I see friends. I see, you know, medical appointments and family and, yeah, all sorts of things every day.
I have a bit of go in the mornings because I get up and I do what I need to do. I clean, I do as much as I can and I’ve got a bit of drive just to get up and get out the door, and when I get back in the door I’m tired and I just cook a meal and watch TV.
But, a lot of my time is spent socialising and, you know, friends and family and keeping busy, occasional holiday, supported holiday, yeah.
Susana found that studying was better for her than working. She said particular types of work are not good for people’s mental health.
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Have there been periods of time where you’ve been in employment? Or has it been, or – obviously you’ve been studying.
It’s been sporadic, but yeah I’ve been studying more, I’ve been studying more than I have been working. So yeah, I found study more enjoyable and more pleasant, more positive, because I wouldn’t want to work in particular roles, in particular jobs, because they’re not very good to your health or self-esteem yeah.
Can you give me some examples?
Stuff like working in retail or hospitality and part time jobs, they’re not very, they might be good for financial gains but they don’t keep you healthy, and it’s very hard to find the right kind of job, yeah.
A few people who had found work as counsellors, or support workers said this has had been a great comfort for them. Simon said he enjoyed working as a counsellor for an ‘internet based counselling service’ that is an online chat facility. He also does charity work for an organisation that gives toys to children in refuges. Jenny started a charity fund for women fleeing domestic violence and described working as a consumer consultant in mental health. She feels able to use her ‘lived experience’ to support others.
Passionate about art,
Maria, trained to be an artist and now also does mental health advocacy. She enjoys both and says ‘life’s pretty good’.
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Yeah, so as a formal artist, I was rapt about that, being an artist. It’s no paid job. You’ve just go make your work and put them in a gallery, which I did, the first five years after I finished college in 1990. I majored in ceramics but around the 90s. I started to develop a photo collage technique and curate with a friend of mine. We would just put shows together every year, up to 30 – 40 artists and really enjoyed that.
I’ve been doing mental health advocacy since 2004. And I will continue to do that, because I really enjoyed doing it, because of education and resources. I can give to people I speak to, which is students, carers of people with a mental illness and I also trained. So those two, and trained as a facilitator to do a course for consumers on recovery.
And those three things through [mental health organisation], which I work on and I really enjoy. So life’s pretty good at the moment.
Michelle studied psychology and now works as a peer support worker. She described it as ‘an amazing milestone’.
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The future is quite exciting. I still have goals for myself. I would really like to finish my psychology studies and progress in my career. I mean, I’m just starting as a peer support worker and, you know that’s an amazing milestone for me as well to be working in mental health. Because I was trying to find work in mental health for about a year after finishing my diploma and just recently got work in mental health.
So, you know, it’s amazing to be able to be working in the field of your choice. So, I just see it in a very positive way that I’m more focused on my career and studies because I didn’t really have the time for that or didn’t really want to do it back when I had my family.
So yeah, and hopefully my health will stay stable. I mean I do have fears sometimes about, you know, what if I become resistant to treatment and things no longer work anymore for me, the medication doesn’t work as well? And that scares me, like the progress, progression of the illness.
Some people said that when they were experiencing severe distress they would make poor decisions about their health or struggle with basic housework, and their relationships could suffer. When she had stopped taking her medication, Helen, who was diagnosed with bipolar disorder, said she couldn’t look after herself, stopped socialising, and spent ’18 hours a day watching TV’. Many people we spoke to had divorced or separated from their partners. When Ann came out of her last stay in hospital her husband told her he ‘couldn’t cope’ with ‘living with someone with a mental illness’.
Anna cares for her eldest son, but finds that she struggles with daily household tasks. She described how she felt ‘incapable of doing the most basic things’ when she made the decision to have electroconvulsive therapy.
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I think the main thing for me has been really the experience with ECT. It’s like yes, one does try everything because it is a horrible state to be in. It’s not something I’d wish on my worst enemy, to feel so desperate and vulnerable and incapable of doing even the most basic tasks. Like I’d just get to the point where – it’s not that I don’t get out of bed. I do get out of bed because I still have to be a carer for my eldest son. But it’s that – I struggle with basic conversations. I struggle with talking to anyone. I struggle with the bills. I struggle with – just doing cooking, shopping, any of that. I just get to the point where I become hyper-sensitive.
And yeah I have tried as much as I can. For example, I did do a research, I was a research subject for the [treatment] through [research centre]. And that treatment really helped. So I always see, you know, I’m always looking to see what sort of research is available because I’m keen to not only improve my status but also to help that if there is a new treatment available other than the dreaded ECT and medication, that I’m there saying yes, there is something else out there. Please open your eyes and see what else is there.
But I think it’s really, really important to, I guess, recognise that there are things in the environment that do have an impact on us and how we’re able to manage and cope. And that needs to be considered I think first and foremost.
And it’s interesting that the current psychiatrist again, she’s actually looking at the impact that being a primary carer over so many years has had on me, and how that influences my ability to cope now. Because of the cumulative effect of that, and the frustration and the desperation that I’ve experienced in that role is important.
Lisa described how she was prone to ‘excessive’ behaviour when she was in a ‘manic’ phase.
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Can I ask, when you say that the behaviours were unusual but were like normal young adult behaviour, can you give some examples?
I suppose like just like drugs, drinking, like promiscuity, like and you know, excessive spending in a, like you’ve bought this and it’s normal. It’s normal nowadays. Like that’s what people do. So it was over the summer and I noticed… Actually this happened again like when summer came around, not recently but a couple of years ago. That people who have a diagnosis of bipolar disorder tend to have manic or have a manic episode in a sort of a seasonal kind of way.
So, I remember this one year I, it was fun when I was in it but just like the aftermath was horrific. Like I was broke, I had like no money to feed myself. I was like basically smoking two packs of cigarettes a day and I remember like crying in a gutter to a friend about how I couldn’t afford to eat but then there’s me, like smoking cigarettes.
I’m like, I can afford to buy cigarettes but I can’t afford to feed myself. And I went and got three tattoos in one day. So like just bizarre things. I jumped off the roof of my house and there was this party that I held and I remember like lying in the middle of the road and not really caring like, yeah whatever, you can run me over.
Several people we spoke to had experienced periods of homelessness. Some described short periods where they found themselves living in shelters or on the streets, whereas for others the period of homelessness was over a much longer period. As Gurvinder’s mental health deteriorated, he said he started to drink heavily. His mother made him leave the house and he ended up sleeping in a park for several nights before finding a homeless shelter where he stayed for six weeks. Ann was homeless for a short while when she was living in London and began to ‘self-medicate’ with alcohol.
Chris was homeless for many years and didn’t want to get out of bed or shower. Eventually he was able to take ‘back [his] dignity’.
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So it sounds like in that period before you’ve been doing so well, when you were homeless and you had a nurse that was instrumental in saying, “You need to take your medication”.
And I’ve also had mentors along the way. People have assisted me from when I first got admitted into a residential program, and basically I connected with a couple of the workers and they helped me so much, to get my life back on track.
I mean, I was a mess. I was depressed, I was miserable. I didn’t want to get out of bed, I wanted to stay in bed for 24 hours. I didn’t want to brush my hair or clean my teeth or have a shower. My personal hygiene was really bad. You know, it was just all these symptoms slammed to me at once.
But then eventually day by day, you know, I took back my dignity. I took back my pride and I was able to move forward.
Some people described how they struggled to find happiness in their day to day life. A few people talked about how they couldn’t understand why they didn’t seem to be happy even when things seemed to be going well for them. Brendan said ‘I was working, I was married and had a child, was living in my own house… how could I not be quite happy?’ Anna, who was most recently diagnosed with bipolar disorder, said she tries not to think about the future and doesn’t know if she will ‘survive another cycle’ of ‘whoopee times’ and ‘crushing lows’. A few people, however, were positive about the future and were making ‘plans’.
Ann now has a ‘supportive partner’. She would like to start a family but is worried about coming off medication.
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I met a new man, which is good. And he’s really supportive and then you know, around the time that I met my new man I started looking for work again and trying to get back into the workforce. And a peer support worker position became available at [mental health organisation] and I went for that and that’s where I work, which is just part time and I’m trying to get back into doing some study part time as well. But it’s nice to have such a supportive partner that I can tell everything to and he understands and he’ll push me in the right direction. If I’m feeling particularly down and I don’t want to leave the house, he’ll support me to take my dogs for a walk or get out and do stuff like that.
And he’ll, he doesn’t really – well if I wanted to lie on the couch all day he’d let me. But he would prefer it if he could support me to do something out and about in the community. So even if it’s just a 10 minute walk round the block we’ll do stuff like that. But I’m a lot more well than I have been, but it’s not a linear journey. It’s not like I’ve gone from being a sick kid to being a well adult. It’s not linear at all. I still have really shitty days every now and then but they’re outweighed by the great days. The great days are really, you know, I probably have one bad, one out of every 20 now, rather than having 20 bad days in a row.
So yeah, it’s been a long journey and it’s a continuing journey. I don’t think this is the end point. I think the end point would be the day that I’m 106 and I die. I think that it’s something that I’m going to have to live with and process. The biggest hurdle for me now is that I’m at the point where I’m happy with my life and my job and my study, but I’m not getting any younger and my partner and I would like to have kids. But that involves coming off of medications and that’s quite nerve-wracking. It’s a very nerve-wracking thought. But we’re just going to take it slowly and see how things go, but that’s the dream, that one day that’ll happen for us.