In the past, it was believed that recovery from
conditions diagnosed as schizophrenia, psychosis or bipolar disorder was rarely, if ever, possible. Treatment and care was centred on the clinical management of the ‘illness’. There is now an increasing focus on
personal recovery that underpins mental health-related policies and laws at a national and state or territory level in Australia. Mental health community support services and clinical services now see supporting people’s personal recovery as an important part of their work.
Clinical recovery is defined as having fewer or no symptoms. In contrast, personal recovery is understood to mean living a meaningful life as defined by the person themselves in the context of their experience of severe mental health problems. Personal recovery promotes the individual’s health and wellbeing, including defining personal recovery goals, building self-esteem, self-confidence, resilience, the ability to maintain relationships, and having a sense of purpose. Personal and clinical recovery are not mutually exclusive, but can go hand in hand.
This Talking Point is about what personal recovery meant for the people we spoke to. You can read elsewhere about the different ways people described living life in the context of a diagnosis of schizophrenia, psychosis and / or bipolar disorder: Self help strategies, Negotiating Daily Life, and Physical health and mental wellbeing.
Quick Links
What recovery meant
Support and social contact
Medication
Identity and looking to the future
Acceptance
Nicky said recovery is different for everybody. She thinks it is about making social connections, gaining insight and ‘accepting what’s happened’.
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I think everybody recovers, but everyone is different as well in how they recover and how much they recover, the level of recovery. It means, it means moving on with your life, it means moving forward. It means developing insight into your mental health.
It means gaining an understanding of how you fit into society, and you know, how you connect with others, and how you become socially connective. Because with a lot of people with mental illness, they don’t connect. It’s very important to connect to develop networks, and also access to other services is very important.
So I think it’s very, it’s vital for people to actually get out there and do it slowly at their own pace, you know. Just make little steps forward and connect and make friendships. And it’s all about trust and building relationships and with groups, and groups of people and that, yeah.
And also recovery is about also accepting, accepting what’s happened to you as well, because a lot of people don’t accept. So then when they don’t accept, they can’t move forward and try new things and discover new things, they sort of focus on the past a lot. So it’s important to, the acceptance factor is important I think.
And having good social networks around you, and family and friends and carers as well, to support you on the journey. And yeah, and to give you good advice on how to, you know, take things at your own pace, and you know, do it the way you feel capable of doing it I suppose, yeah.
What recovery meant
Most people we talked to considered themselves recovered at the time of the interview, but recovery was described as something personal and unique for each individual. It could mean simply being well at the time of the interview, like Vanessa who said, ‘You would say probably I am pretty well recovered, but it doesn’t take much for me to start to spiral down’. But for most, it meant a longer-term change in their relationship with their illness. According to Chris, ‘Recovery is a journey. Recovery does not have a destination. Recovery is seeing the light at the end of the tunnel and getting through that tunnel towards the light’.
Many of those who spoke about recovery had a strong sense that it meant being able to better manage symptoms or prevent them from becoming worse. This could mean structuring life in such a way as to avoid stress or learning techniques to deal with the symptoms themselves. Maria, who saw recovery as an ‘every day’ thing, described how she takes Monday and Tuesdays off and gives herself time to recharge. She said by doing this, she feels she can do things she couldn’t before.
Ann has trained her voices to treat her more kindly and accepts them.
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I mean I’m quite happy to talk about it and I don’t hear the voices as much as I used to, which could be due to medication. Or it could just be due to the fact that I’ve learnt over so many years how to deal with them and turn them into a more positive response.
But sometimes, particularly if I’m low, because all of the voices have names and I generally see sort of like a heat haze where the person would be. I don’t speak out loud to them. I’ve never done that since I was a child, but they all have different voices and names and different personalities. But they kind of when I’m particularly low would almost work as a personal cheer squad and try and sort of build me up a bit if that makes sense. So you know, it’s not always a distressing, negative thing. They can be quite positive.
Sometimes when I’m you know, doubting myself or feeling really anxious about something it can be a negative thing and it can turn to you know, a negative conversation. But more often than not it’s a distraction or a positive thing and I think that’s just because I’ve experienced it my whole life. I’ve trained it myself or trained them or something into treating me a little bit more kindly. I’ve trialled a few different medications to eradicate it but none of them, nothing’s worked. And if I never get rid of them it won’t actually really bother me. It’s just I’ve just come to accept that it’s part of who I am and it’s a bit different to some other people.
Some people we spoke to didn’t have a clear idea of what recovery meant for them. Quite a few struggled with the term itself, or were still discovering what recovery might look like for them personally. Paddy said recovery was ‘trying to focus on what enables you to get back to a bit of stability’, but added that he couldn’t ‘really pin it down’.
It could be hard to reconcile the term ‘recovery’ with the challenges of living with severe mental health problems and some felt the term caused difficulties by creating expectations for them.
Allen said he tries not to compare himself to others, and focuses on the small things he can achieve.
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I don’t know that I’ve really recovered to the quite extent that people say, “Oh well what do you do hold down a fulltime job, go on holidays to Europe or America or, you know, the East Indies or whatever”? And, you know, I don’t do all those things so I haven’t recovered to that level. But you’ve got to ask yourself is that in the criteria of what I set out to recover to.
People, and like the media, would say, “Oh to recover you’d need to have done X Y Z”. But to me, I sort of say, “Well, I need to have done what I set out to do”. So if I’ve done what I set out to do and maybe piece by piece, step by step, add a little incremental bits more to that recovery.
Like you know, for example, just getting things done around the home and the little things fixed and the little projects undertaken finished. Learning new skills, making new friends, enjoying yourself more, doing what you want to do with the people you want to do it with. That’s recovery to me. But I can’t help but think that people as they live don’t really fulfil their greatest capacities in recovery without a lot of sort of, content with good enough. And I think good enough can be a safe place to be because it’s easy to achieve and it’s not too taxing to do.
But rather than sort of saying, “I want to explore, you know, Mount Kilimanjaro or climb Mount Everest or something”, which I don’t anyway, I can just say, “Well I can look at that on a video or get a travel book or hear of someone’s who’s been there or, you know, speak to someone and listen to all of these tales”.
I mean my partner’s got a different view on recovery. I think she compares ourselves to other people a lot. I think this is a bit of a hindrance, comparing yourself to so-called other people whoever they are at the end of the day. Whereas I don’t really, well I probably do compare myself to other people but I try not to compare myself to other people.
I try to compare myself to where I am or people that are not quite as doing well as I am. Rather than worry about people who are doing better all the time. Because I think if you sort of worry about people that are doing better all the time you’ll always be unhappy in a way.
For
Anna, recovery was ‘elusive’. She thought it was better to talk about ‘living with and surviving’ mental health problems.
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Okay. The whole recovery thing, it’s spoken a lot about, certainly in the circles that I’ve been in. And for me it’s been very elusive. I haven’t recovered. It’s a hell of a long journey. I’d like to think that there is such a thing as recovery, but I’m not so sure in my case whether there ever will be. Because I’ve been told, that now that I have this stupid illness that it’s pretty much what I can expect for the rest of my life.
So it then becomes, well how does one best manage? So I think maybe in some instances the recovery thing is an end goal that cannot be reached, and might lead to extra frustration. But if we can just bring it back a little bit. Like we’re going from one extreme to another I think. If we can talk about managing and living with and surviving with, I think that’s more easily achieved. Because I think even the recovery thing put too much pressure on patients.
I think with the whole recovery talk, I know it’s a model, but I’ll just call it talk, there is this expectation that people will recover and that they can influence their own recovery and that they should be doing that. And that it’s only a transient condition and yeah, everything should be fine.
And I think it’s even with relatives and friends, the understanding’s not there that some mental illnesses are there for keeps. And it doesn’t matter what you try and how much you try to change your own thinking and all of that, it doesn’t actually halt the progression sometimes of, you know, your good times and your bad times.
And you know, it’s like, “Why aren’t you trying? Why haven’t you fixed this already?” And I actually had, she was a very good friend. She’s not anymore, and that’s another thing that I failed to mention before, that I’ve lost all my friendships because people say, “Can’t you be positive for a change?”
And with the media, it’s good that they’re having stories about mental illness, so that hopefully it reduces a stigma, but it also again perpetuates the fact that the person’s responsible for their own state and that they should get over it. And it’s not a case of getting over it. It’s just like, you don’t just get over diabetes, or you don’t get over cancer in some cases.
It’s something there that you just have to learn to manage, and I wish people would understand that. Because I’ve found that really, really actually quite hurtful and devastating, because I have lost all my social connections because people don’t understand that this is not just a two-year thing. It’s something that I’m most likely going to have to manage now for the rest of my life. And you know I try and manage the best I can, but it’s not always possible.
For some people the idea of recovery was difficult to think about because they still felt isolated or, like Allen, were dealing with constant change: ‘The ground beneath has been moving all the time’.
When people were still feeling isolated, managing life changes, struggling with symptoms or unable to ask for help, the idea of recovery could seem far away. As Helen said, sometimes it could be ‘just so hard to climb up out of that dark hole again’.
Brendan understood that recovery was about nurturing interests and relationships but wasn’t sure how that worked in reality unless you had someone to support you.
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I’d like to say that there’s a happy ending but I guess I’m still trying to work that bit out. But yeah, I think it feels like it’s been, well not feels like – it has been a fairly lonely road, that I’ve felt really isolated along the way. I think, not having a partner and being away from my son has made it really difficult at times, most of the time.
Yeah, it’s funny because as part of, you know, working with [mental health organisation], it was all about this idea of recovery and, you know, it encompasses everything that’s going on for you in your life really, and that there is this, not that it’s a possibility, but, you know, that you can get better. That things can improve. That it’s not just for some people who are able to get well. That everybody can get some kind of improvement in whatever circumstances they’re at. And in order for that to happen, it’s really about looking at everything that’s going on.
So sure it’s about the clinical side. You know, what treatment you might be receiving, you know, who you might be talking to about things. But also about, you know, looking at the stability of where you’re living. Looking about, you know, nurturing what interests that you have, looking at the relationships that you have and about, you know, if you’re happy with those and are you able to improve them.
So I guess it’s looking at, you know, everything that’s going on in your life and to be able to try and make some kind of, I guess, you know, just take stock of what you’ve got and where you’re at and then to try and, you know, to move that forward. I guess that’s, sort of, I don’t know… which all sounds great, but I don’t know how the reality of it works, unless you’ve got somebody there working with you to help you.
Like I think the programme that I was working in, I would’ve loved that to have been around, or to have been available for me. To have someone who was, you know, that you could talk to about that stuff and who was interested and who would talk through options with you. I think if there’s more programmes like that around that would be great.
Support and social contact
For many people having supportive family and friends was critical to recovery (see also Family and friends). Chris felt he was ‘actually able to develop and go to places [he] never thought possible’. He attributed his new outlook on life to having somewhere to live, feeling supported, and taking medication. He said that he enjoyed living with a friend, and knowing his parents were ‘just a phone call away’.
For
Simon recovery was about having friends to support you.
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I think everyone’s capable of recovering to a greater or lesser extent, depending on how much they have friends. The more people you have that support you, the more people that you know, the more people you talk to, trust, the better your support network is, the more you can recover. If you’re out there on the streets, with no one to talk to and delusional, what hope have you got?
You’ve got to have somebody prepared to say, “Go and take your medication. Look after yourself, I care about you, start caring about yourself too”.
Because mental health problems could lead to breakdowns in relationships and isolation, the development of nurturing relationships and supportive networks were an important sign of personal recovery for the people we talked to. Nicky thought that the development of social connections was very important for recovery generally.
As well as receiving support from friends and family some people spoke about the benefits of belonging to a church community.
Religion was an important part of
Evan’s recovery. He said prayer, and connecting with people gave him hope.
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My parents grew me up in a religious environment. And so I’ve been religious ever since and I think praying to someone who’s up above everyone is important. Because it’s validating, it’s having hope, it’s asking for things to happen, I think. And also the church environment allows social connection to happen, allows friends to develop, allows people to see people who have mental illness worse off than themselves as well. Or see people better off than themselves with a mental illness as well.
Either path is just as therapeutic because if you see people worse off than yourself then you would try to step in and help that person. If you see people better off than yourself that allows you one day that you may become like them too. So either path is therapeutic and so you see a diverse range of people in the church from all different illnesses, different mental illnesses, physical illnesses. And you socially connect with people there too. And the church is also, I mean pretty good with church because the priest that I connect with he’s a priest that knows me from a child, knows me before my mental illness.
And he’s a priest, a family priest. You know, Greek Orthodox priests get married, he has eight children I think or eight grandchildren so he understands and he’s had some children who’ve had some hardship as well. So he understands all those circumstances and he’s given me a leading role in the church as well, in being a committee member, in running the church and I enjoy that, I enjoy that. And my wife actually cleans the church on a voluntary capacity. She goes there every week to clean the church and sometimes I go and help her too. So church has been very therapeutic, it’s been communal, it’s been community focussed, it’s been an environment where, has led me to, I’d say, an accelerated recovery.
Medication
Quite a few people talked about the role of medication in their recovery. Michelle described medication as ‘definitely a part of [her] recovery’. For many people, medication was seen as one tool among many that helped. Helen, who at the time we met her was taking medication and seeing her psychologist, said ‘life is good’. She acknowledged that ‘no one’s ever 100 per cent’, but thought she was ‘getting close to it’. For Susana, ‘recovery means taking medication’, as well as being with people who understand you, and taking care of yourself. Ann said medication was only 30% of the ‘recovery work’ and that ‘the rest of it has to come from within’.
Maria has taken a mood stabilizer for 25 years and now also takes an antipsychotic. Although she has ups and downs she feels she has ‘more control’ and said medication has helped with her recovery.
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From the very beginning, I think they gave me lithium, it’s been 25 years, and I can’t remember not being on it. So been on – it’s been a good mood stabiliser for me all this time. So the lithium must have been working in terms of a stabilising my mood. I’ve been on countless other medications, I can’t even remember ZYPREXA (olanzapine) some worked for a short time, stopped working, go to the next one. Lithium has always been the stable one.
I went on SEROQUEL (quetiapine) which is making me feel really stable, I can work now. You have bad days, but not to the point of being in hospital. I haven’t been in one since 2008. So you know, I have more control, like I enjoy what I do, that helps a lot with my recovery, you know I have good friends.
Identity and looking to the future
While feeling unwell for some people meant seeing no future and feeling isolated, personal recovery was often associated with looking forward to the future, making plans and developing social connections. For Tanai, making plans for the future was key to her personal recovery. She said she gave herself a timeframe to try and avoid being unwell and it got longer and bigger ‘because there were more things to do’.
While finding an identity for oneself going forward was considered an important aspect of people’s personal recovery, several acknowledged that it could take time. As Nicky explained, ‘it takes a while to feel yourself again and to feel your own identity’.
Severe mental health problems and the personal recovery process could shape people’s sense of who they were and build resilience. Lisa described how being with other people with mental health problems had shaped her identity. She said, ‘I very strongly identified as someone who is mentally ill’. Some people we spoke to felt that their experience of living with a condition diagnosed as schizophrenia, psychosis or bipolar disorder had made them a stronger person. Although Niall considered his journey to have been a ‘relentless struggle’, he said he’d ‘learnt a lot along the way’. He felt that the journey had given him ‘inner strength as well as resilience in [his] recovery’.
Alice feels different now and thinks maybe her mental health problem was a ‘wake up call’ to make her more resilient.
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Oh I definitely feel very different to what I would have been back then, but you know I guess looking five years prior, I guess I would have felt different. I guess to me it’s just something that I took for granted, like your mental health, it kind of yeah… It sort of opened up a sense of vulnerability in me and that we’re all…
Again you know, I’m not naive enough to think it’s just me. I think we’re all vulnerable to an extent, so you know maybe I needed that so called wake up call. To kind of get me resilient to what the rest of life has to offer. It’s can you really go through life you know by taking your mental health for granted, or your emotional health for granted to that extreme.
Not all the people whom we spoke to wanted to associate their sense of who they were with their struggle with severe mental health problems. Tanai, for example, couldn’t ‘stand’ those people who identified with being recovered. She thought that it was as if their past ‘illness’ was ‘everything’, and that they had lost every other part of their identity ‘save for the sorry one of “I was sick”‘.
Ann described recovery as getting in touch with who you are now, rather than who you were before, and finding things that are meaningful to you.
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Recovery to me is hard to define. I think it’s an ongoing process of self-discovery. I don’t think it’s something that anyone can do for you. I think you can get support with it, but it needs to be sort of intrinsically motivated. For me it was about getting in touch with my values again. Rather than just trying to set meaningless goals it was about getting in touch with what actually feeds my soul and what makes me happy.
So like when I was saying about being stuck in the house and not leaving the front door. For me to go for a walk on my own had no meaning, it had no value to me, but for me to take my dogs for a walk has meaning and has value to me. So it’s about finding what makes you happy and what feeds you and following those things, rather than just setting goals of making sure I do the dishes every day because realistically, they can sit there.
But it’s more important to me that I get out and get some sunshine and spend some time with my animals or you know I’m really into photography. So spending time with my camera really makes me happy and feeds my soul. And it’s about getting in touch with those sorts of things again and discovering who you are and I think the biggest bit of recovery for me actually was not even using the word recovery.
I think recovery implies that you go back to the life that you once had and that could have actually been quite damaging. So it’s about redefining who you are and what you want from your life, because it might not be what you had before you got unwell. It might be something completely different and that’s okay and accepting that and moving forward, rather than trying to get back what you thought was what you wanted because it might not have been the right thing in the first place.
Acceptance
Quite a few people described how acceptance had led to a change in their relationship with their mental health problem, though it was acknowledged that this took time. For Taylor it was important ‘to accept what you’ve got’ but she said this took her ‘a while’. Chris, who heard voices, described how he spent five weeks in hospital trying to figure out what was ‘real’. He said it took two years for him to accept that the ‘voices were not a real person, a real entity’ but were just a part of his ‘imagination’.
Acceptance was deeply personal for the people that we spoke to. For some it meant realising that severe mental health problems were going to be part of their life, and that was ‘okay’. For others, it was about gaining a better understanding of their illness. In Tanai’s view, ‘you never get rid of it completely’. She felt recovery was more about accepting that her thoughts and feelings exist and ‘learning how to live around them’.
Carlo mentored others living with mental illness. He said ‘true happiness’ and ‘peace’ came through embracing the ‘difficult stuff’.
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I kind of mentor a lot of people who are depressed or going through depression or anxiety and you know, the first thing I say is, “It’s okay, it’s okay that you’re going through this experience. There is nothing wrong with you. It’s a human experience and try and allow yourself to feel that way”.
And a lot of the rehab work that I’ve done it also talks about allowing ourselves to really feel what’s happening and not avoid it. And it’s like this whole, a game that there is in the world or in society that well, we’re only going to chase this kind of happy feelings and the warm fuzzy stuff and ignore all the rest.
But it’s only like half the equation and so if we can embrace the difficult stuff as well, that’s where the kind of true happiness is and true peace with going through the experience.
Feeling as though they were not alone in their suffering or that depression and anxiety were ‘normal human emotions’ was helpful for some. Charlie found it comforting to realise that she wasn’t the only one suffering: ‘everybody has issues… and mental illness is just part of my path’.
Evan identified several important aspects of recovery – acceptance, self-responsibility, hope, and being part of the community.
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Well I guess in recovery there are people that are unique in their recovery. The definitions come right, left and centre about recovery and people talk about recovery. I think the main essence of recovery is to be hopeful. And also to never lose sight of one’s abilities and to be self-responsible for one’s actions and one’s abilities. And to continue on with life as a normal human being like you were, like you are. And to get on with life regardless of having a mental illness.
And I think another part of recovery’s accepting the fact that you’ve got a mental illness and getting on with life you know. I think the acceptance part is a big, big role. I’ve got my sister who’s got bipolar, she accepts it now but she won’t open up to the, she doesn’t open up to everyone about her mental illness. And I think with that she’s a little bit paranoid of who knows about her mental illness, who doesn’t. And so she’s still on recovery journey and she’s trying to get better.
But I’ve always told her and I’ve given her time to think about this, that opening up about her mental illness in general will create a caring community, will create a caring community towards her too. So I think that… Yeah they’re the essence of recovery. I think acceptance, self-responsibility, hope and just being a normal person in society, yeah.
