Support with life decisions was very important for the people we spoke to. The ups and downs of living with severe mental health problems meant support was both essential but could also be difficult to obtain. Many people had experienced divorce, separation or a breakdown in family relationships and found friendships difficult to maintain. When people found it difficult to talk about their symptoms they could isolate themselves and perceived stigma and discrimination could make it difficult to reach out for help.
This Talking Point is about the support people received when making life decisions including moving home, finding work, and getting help with managing their symptoms. Some people spoke about how they needed someone to help or give an extra push to get them to commit to a change that ultimately helped them move towards personal recovery. Others felt it was important to remember that support isn’t always available and cautioned against becoming over-reliant, like Evan who said, ‘to become yourself you’ve got to be able to make your final decision’.
Quick Links
Getting help with being unwell
Working
Daily decisions and living independently
Finding somewhere to live
Evan explained that problems related to mental health create a lot of uncertainty and there was a need to be able to trust others.
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Very much so, very much so. It’s an area or territory if you like of uncertainty. When a person develops a mental illness he gets to come to a point where he’s uncertain of where to go or with decisions or making decisions. And, not only that, it’s also whether the medication will work or not as well – that’s an uncertainty.
There’s an uncertainty on whether I’m going to sustain a job, there’s uncertainty in whether it’s going happen, whether I’m going develop a relapse in the future. All these uncertainties create the need for trust to be developed through a practitioner and my family people. For them to maybe make decisions for me when I can’t make them, yeah.
Many people talked about how their family, and parents in particular, supported them and you can read more about that here: Family and friends. Getting support from family members could be very important because family are often in regular contact and able to offer a special kind of connection and reassurance. However, if family members were not coping or did not know how best to give support, this could place an added strain on people and relationships.
Brendan said his mother worries about him, but rather than this being a support, he found it added to his problems.
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My mum is probably the more, the most interested, if I can put it that way? But she’s, you know, she’s got her own mental health issues, they’re really undiagnosed. And I guess I’ve always not wanted to burden her and just with what’s happened just recently. I said to her, “Well partly I didn’t want to tell you mum, I didn’t want to make you worried”. And she said, “Oh, you know, but I, you know, I’m allowed to be worried”.
But then, you know, she rang me the other day and I was out, I was riding my bike, and I had the phone in my pocket, didn’t hear it, and she leaves me this worried message, “Oh where are you? Hope you haven’t done anything stupid”. You know, I rang her back and she didn’t answer the phone.
Then I spoke to her like two days later and I mentioned to her, “You know, what’s with this message mum?” She said, “Oh you know, I don’t mean to get worried” and I thought, ‘Yeah, you wonder why I don’t talk to you about some of this stuff, because, you know, your reaction’s so extreme, you know. I know you care, but I don’t want your worry because it just adds to my problem’.
Knowing that family members were also receiving support was important to some of the people we spoke to. This could mean help in coming to terms with the diagnosis a loved one had received, or practical assistance. When Maria was in hospital, translators were provided for her parents, which meant they could better understand what was happening.
Getting help with being unwell
When people first became unwell, not knowing what to expect or feeling let down was a common experience. When Jenny became unwell she couldn’t get medical help because she ‘didn’t know how to go about it’. She saw a psychiatrist but felt he ‘didn’t really help’.
When people were in ‘crisis’ it could also be difficult to know where to turn. When David was experiencing symptoms of depression in his pre-teens, he was too self-conscious because of perceived stigma to seek help. He attended a school where his parents both taught and he didn’t have the confidence to see the school counsellor in case his parents found out. David also said seeing a counsellor was stigmatised among his peers as a ‘sign of weakness’.
Niall used crisis support phone lines when he was feeling suicidal because having someone anonymous to speak to confidentially was a big help.
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But when I look back on those dark times I think that you’ve got to see that there’s a light at the end of the tunnel, that there’s some hope out there for you. And when you’re dealing with these difficult issues and trying to make people understand is one thing that’s very difficult. But that’s why these help lines are very good: beyondblue, Lifeline, suicide help line. When there’s been no one else that could understand what I was going through, I’ve phoned them up and they’ve been, they’ve been good.
They’ve given me advice, they’ve said, “Well, you’re resilient, you’ve got a lot to offer”. And they’ve built me up again and I’ve thought well, it’s actually helped me out of feeling very low and doing something silly or anything like that on many occasions.
And so they’ve seen me through the best of times and I’ve been very lucky I haven’t really had attempts on my life or anything like that.
Some people spoke about their relief when friends or family stepped in and made them get help.
When
Brendan was feeling very unwell he considered ending his life. A friend in whom he confided told him to get some help.
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And so I had this idea that if I did something really horrendous then I would push myself to a point where I’d have no choice but to take my own life. So I thought that if I murdered someone that then I could take my own life.
And so one night, I was sitting there and, you know, I’d worked out who the person was going to be and how I was going to do it, well sort of how I was going to do it. I didn’t really have any great plan. And I was sitting there for a long period of time in my son’s room, even while he was asleep and I was really frightened that I could have these thoughts. Because I’d never, you know, thought about doing anything like that before. Well not to any great extent anyway.
That, you know, somehow that this could be some kind of solution really worried me, that I would think like that. And so I spoke to a good friend and said, you know, I sort of dropped it on him. And, yeah, he was really good about it actually, you know, I think, I don’t know how I would have handled it if somebody had said it to me.
But he said, “Yeah, look, you know, you’ve got to get some help, you’ve got to talk about this, you know, because this isn’t good”. And I thought, ‘Yeah, yeah you’re right’. And I was, I think I was hoping that by saying this to him that something would happen, and it did – not initially.
I went with my brother to try and get admitted. I went to the hospital. I’m just trying to think how we initially went about it, whether we went to… I think we might have gone to the emergency, we didn’t really know how this all worked. So we waited for a while and then I got to speak with a nurse and I think I told her about what was going on.
Finding other people with similar experiences could be very reassuring. Some of those who attended support groups found them to be a place to socialise and gain valuable information and support to help them in their personal recovery. Support groups also provided practical assistance and you can read more about that here: Mental Health Community Support Services and Peer Support. However, groups weren’t for everyone. Brendan described how he had gone to a support group and completed a course on self-esteem but had stopped going because he felt he was doing better than some of the other people who attended and that their ‘stories seemed a lot different’ to his own.
Working
Many people we spoke to had paid employment at some time in their lives. They talked about the challenges of work when they felt anxious and some people mentioned their ongoing concerns about what would happen should they become unwell. Feeling supported could mean simply getting confirmation that it was okay to take time off when needed or receiving assistance to find a job that suited them (see Experiences of work). Jenny wasn’t enjoying her work in accounts but struggled to find a different job because she ‘didn’t have the confidence’ or self-esteem to do the ‘right things by myself to be getting a job’. She said her psychiatrist told her ‘you’ll never get another job, stick with what you’ve got’, which she didn’t find helpful. Eventually a friend who Jenny met when she attended a course found her a job at a women’s refuge.
Paddy’s psychiatrist helped him when he was anxious about going back to work because he thought he wasn’t well enough.
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But I often had to have, like even outside hospital times, I had to have time off work. Yeah. And always my shrink would, like I remember once he was very handy to have, because like I was generally mentally unwell some weeks or whatever and I said to him, “Look, I’m a bit anxious about going back to work on time” because I’d had the certificates for a few weeks and they just made sure I handed them in but – to my employers. I said, “I don’t know if I’m still unwell”. He just said, “Well, we’d better not send you to work then”. That was just nice of him, you know? So that’s good, yeah, he was, he’s very professional.
Daily decisions and living independently
Making daily decisions like what to eat, how to make the best use of finances, or even whether to shower or go out, was a challenge for some people. Support could be provided through training, practical assistance, or having aspects of their care taken over by others. Chris was living with his mother when he felt very depressed. He said that he didn’t know how to cook or look after himself because his mother had always done everything for him. Chris described how he attended a residential programme where the workers helped him get his ‘life back on track’. They taught him about personal hygiene, cooking and shopping. Chris described how the course helped him to feel less isolated and make friends. He said it helped him ‘get the desire, the will back, to exist, to live again’. Charlie had ‘lost the ability to handle money and to use the telephone’. She explained how she had received long term support from a ‘mobile support team’ worker who took her to the supermarket, out for walks in the park, and to her appointments. Gurvinder said he had always had problems paying rent and now has a state trustee, appointed by his social worker, who makes decisions over his money.
Taylor found going to the shopping centre difficult and although her psychologist had given her ‘methods’ for dealing with her social anxiety, she thought there was a need for someone to ‘hold your hand, to go with you’.
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The first psychologist, she was really good. She was very friendly, very understanding but with my symptoms I’m having trouble going back into shopping centres and things like that. So I think it’s a bit of social anxiety as well. So she didn’t really give me or help me in any way kind of get back into those type of things.
She just gave me like methods but not actually going and doing it physically with me. So I think when people have symptoms like that, I think you kind of need someone to hold your hand, to kind of go with you and be there with you. Having your partner do it it’s good but I think they’re too close to the situation so you kind of need someone that’s trained in that field to help you do it.
When you said she gave you methods, what did you mean by that?
Well, like how to concentrate on your breathing and just stuff like that and we tried cognitive therapy and just different things. The second psychologist tried stuff like that, positive thinking and all that but it hasn’t worked. It might work for some people but it didn’t work for me because I’m finding the support worker a much better option for me.
Tanai found that if she didn’t get out of the house regularly she developed agoraphobia. Going to a psychosocial rehab helped her learn how to socialise, buy her own groceries, and keep her home clean.
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I had come back from [city] and I was staying at my grandparents’ house and I’d kind of reached a really bad point. Like I was very depressed again and needed some kind of help. I needed to get out because I, I have a tendency to become agoraphobic, that’s something I’ve always really, really struggled with. Like if I don’t leave my house on a regular basis, I become a shut-in. I have to keep a particular routine of making myself go places and do things otherwise I forget that I’m capable of doing it and fall back into really, really old habits of fear and avoidance. And so I made the decision to go into the psychosocial rehab and in a sense it did help.
Like I learned how to socialise again and I learned how to look after myself. I learned how to do my own groceries, keep my home clean, look after pets. You know, all that kind of stuff.
Who presented the option to you that you could go into it?
That was given to me by a social worker who I was connected to through a therapist.
Integrated support for those who had spent time in the prison system was seen as important. While Brian was given choices and support when he left prison, Charlie said when she was released she received no support despite still feeling unwell and had nowhere to live. Charlie thought this could have been ‘better handled’.
Finding somewhere to live
Several people mentioned being homeless or having to ‘couch surf’ at some point in their lives (see Finances and housing). People relied on friends and family networks for help. When Simon’s mother gave him a week to ‘get out of the house’, his father found some friends who took him in. Allen said his uncle helped him find somewhere to stay when he left hospital because his parents wouldn’t take him in. Chris ‘bumped into’ a woman at a mental health conference who had supported him previously. He said she put in an application for accommodation for him. Other people talked about the difficulties they faced when they did not receive support to find appropriate accommodation.
When
Michelle was told to leave the mental health unit she had nowhere to go and no one to help her. She made phone calls and found a caravan park where she lived for nine months but her health deteriorated.
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And I was still hearing voices a lot and I stayed there for about a month because I had nowhere to live and I found the public system not very well linked in with services, you know. It was kind of strange like that. So I basically they said, “Look you can’t stay here forever. You have to find somewhere to live”. But there was no assistance at all. Like just maybe, “Oh well, try the caravan park”. And stuff like that, so anyway, I had to make all these phone calls and found what do they call it, a permanent caravan park? What do they call it, where you can stay for a long time rather than just a holiday one?
Yeah, I know what you mean.
Yeah, not too far from my parents’ house, so that’s where I went from there. My parents also gave away my cats at the time because my cats were with them. Like we’d taken them from the house to their house and, I don’t know, that was really traumatic too. They gave them away to the RSPCA and somehow I found out about it, maybe my mum said or whatever. So I had to then try and get them back because I didn’t want my cats given away.
What happened then? So I went into the caravan park and it was just a cabin. It was a pretty basic cabin and I stayed there for, I think, it was around nine months and then. And still wasn’t taking the medication. I was on the pain medication still, but not taking medication for the voices and yeah. So it just continued.
