Recovery in Lived Experience of Personality Disorders
Recovery in Lived Experience of Personality Disorders
Through the process described above we produced a set of fifteen descriptive themes organised into three sections. The iterative process of writing and rewriting within the team – stage 6 process – resulted in a set of interpretive themes that cut across our emerging understanding of recovery. The final set of themes is illustrated in Table 2 :
In order to answer our questions about their understandings of recovery, all participants spoke in depth about their lived experience of personality disorders. It was clear that we would not be able to explore the concept of recovery without first articulating that lived experience of personality disorders. Given the lack of existing literature describing that experience, noted above, it seemed important to report that data here. We report detailed findings on supporting recovery in personality disorders services elsewhere, focussing in this paper on our aim of understanding recovery in the context of lived experience of personality disorders.
In articulating their lived experiences of personality disorders, interviewees seemed to us to be describing a continuous tension within the self between the experiences of an internal and an external world; a complexity of ambiguous, interrelating and conflicting feelings, thoughts and actions as the individual tries to live in and cope with both worlds. Interviewees reported feeling alienated by a hostile outside world and needing to isolate themselves within their internal world in order to feel safe, often at the cost of a punitive or harmful relationship with the self. This articulation of the lived experience of personality disorders is represented diagrammatically in Fig. 1 below and explored in the analysis that follows:
(Enlarge Image)
Figure 1.
The lived experience of personality disorders. Outward facing arrows indicate the polarising thoughts, feelings and actions reported by participants with respect to internally and externally experienced worlds. The intersection of the circles represents experiences of ambiguity, conflict and harm to the self
The Internal World. Interviewees told us they often experienced feelings of extreme isolation and detachment:
… very isolated, extremely isolated … I couldn't trust my own judgement, or anything like that … I get very detached. It's like I'm sort of up here looking down and 'what's happened?' (Int 5)
Interviewees recognised that this sometimes self-imposed isolation could be harmful and could lead to further feelings of alienation:
… way I see it is I isolate myself when I feel I have to, I'll go mad if I don't isolate myself and then when I isolate myself too long I feel like I am going mad anyway so I can't work out how I can survive properly … (Int 1)
Interviewees spoke about intense and polarised emotions, of rapid changes in mood, and of the unpredictability and chaos that this brought to their lives:
… it can change instantly how I'm feeling … I could be fine one minute and the next minute I would just go down, straight down … you're walking along sometimes, a trapdoor opens and you just fall through the trapdoor and you can't get back up again … (Int 3)
Interviewees spoke about feeling vulnerable, and of the panic and anxiety they experienced in their everyday lives as a result:
Well, I'm a very sort of scared person, very anxious, I panic at the slightest things sometimes … (Int 6)
Interviewees frequently referred to feeling unsure of their own sense of self; of whether or not they were 'normal':
I find I have a very uncertain sense of self, so it's hard to know, to have hope in yourself when you don't have a clear idea of who you are … (Int 4)
I think that to the day that I drop dead, whenever that is, I will still be, I don't know what normal is … (Int 1)
Interviewees also talked about not knowing what was wrong with them and of not knowing how to get on in the outside world as a result:
I didn't know what was going on. I just knew it wasn't right because my behaviour wasn't right … I spent a lot of time wondering what was wrong with me, thinking why can't I be happy or why can't I go and get a job … everything was why and I had no answers to the whys … (Int 2)
Interviewees described a negative and punitive relationship with the self, characterised by feelings of self-hatred, low self-esteem and self-criticism:
… feelings of complete inadequacy and self-loathing, self-hate and generally nothing positive … very self-critical, just blame myself for everything, just feel that I let everybody down and … it all snowballs, doesn't it? You know, 'I'm useless, I'm worthless' … (Int 3)
Often these self-critical feelings led to self-punishment, or self-destructive or high risk behaviours:
I punish myself and I hurt … my last serious attempt was last summer and I took 250 olanzapine and I stockpiled a whole lot of medication … was in intensive care for about five or six days … (Int 4)
I tend not to, when things are getting difficult, go down to the pub because … I know where that ends … I end up in a bit of a mess or … somewhere trying to score drugs … (Int 5)
The External World. Interviewees described how they perceived the external world as an unpredictable, and potentially harmful and hostile place:
I'm not happy where I live and I haven't been for a long time and I have disturbance from the neighbours and very paranoid about it … (Int 3)
… feeling that I'll be destroyed. I feel as though I live in a culture that is making me ill … (Int 1)
This perception seemed to us to be influenced by interviewees' internal worlds; external experience and internal state of mind seemed to relate in a vicious circle:
My perception of people involved in my care undergoes like a paradigm shift. The people who I once thought were caring and supportive become … tyrants who are trying to manipulate me and erode my freedom … human beings are all evil and corrupt and everyone's out to take advantage of me … (Int 4)
Most interviewees told us that they felt the only way of feeling safe was to isolate themselves from the external world:
When I get more paranoid, I isolate myself, I don't go out for weeks and months on end. I just barricade myself indoors, stay indoors … (Int 2)
However that decision to withdraw was often a dilemma, interviewees recognising that they were isolating themselves but feeling that they had little choice:
I know that anything that I don't invite into my life will have a negative impact on my mind so I choose not to do that and people can sort of sit there and go 'oh, well you're isolating yourself'. Well no, I'm actually protecting myself from a whole load of crap that's going to start going round in my head … (Int 5)
Interviewees described becoming practised at limiting their contact with the outside world as a coping strategy:
I only feel that I'm feeling better because … I don't have to engage with the world … I can go outside but then I can come home if I feel I can't cope. That sounds sort of very pathetic but actually it feels like the only way I can control my feelings … (Int 1)
Interviewees also pointed out that actual experience of stigma was behind their decisions to withdraw:
… if you imagine floating through life and not really being able to connect with anyone at all because you have to hide yourself, you have to put on a mask to show the world, that you're not mentally ill because it, there's such a stigma behind it (Int 5)
Interviewees told us about difficulties in relationships, and often conceived of how they interacted with others as a barrier to engagement with the outside world:
I think expectations … what other people might expect from you, like if you go out … instead of sitting in a corner you've got to participate in playing a game of darts or a game of pool but I'm quite happy in my corner with my drink of coke … you don't live up to their expectations then, that's probably why I haven't got any friends … (Int 6)
Interviewees spoke of a sense of failing in the outside world as a result of the difficulties and struggles they experienced with fitting in:
At the moment, someone asks what have you done with your life, you know, I have done absolutely nothing, I left school at twelve, drink, drugs, prison, come out, a locked ward, that's it. I can't say that to somebody that's been to university, has got a good job … I said once in an AA meeting about being in prison and someone went 'argh, that's disgusting', and that fucking kicked me in the teeth. (Int 2)
Diagnosis. We collected extensive data on interviewees' experiences of, and attitudes towards diagnosis. We report here examples that both reinforce the lived experience of personality disorders we have illustrated above, and conversely enable the processes of recovery described in the following section. Interviewees suggested that receiving a diagnosis of personality disorder could increase their isolation from the wider world because of the stigma from friends, family and medical professionals that resulted:
… my GP, her attitude changed completely when I got this diagnosis and she was much more guarded and wary of me … when I finally disclosed that I was BPD … my friends stopped returning my calls … (Int 4)
Ideas about untreatability present in the literature, which potentially impact on expectations for recovery, were also reflected in interviewee accounts:
… having a diagnosis of borderline personality disorder I'm constantly told by people that I'm not going to get any better … my doctor said: 'you won't get better after this' … (Int 5)
There was ambivalence towards receiving a diagnosis, with interviewees also reporting that the knowledge and information they received as a result helped them to understand aspects of their experience:
… before I found out my diagnosis I was floating around thinking 'what's wrong with me … This isn't just depression?' … as soon as I found out … I started reading up on it and it got me to a point where I can understand myself … helped me to accept myself, which then increases self-esteem, self-value … (Int 5)
We asked interviewees what recovery meant to them, and they answered very much in the context of the lived experience of personality disorders described above. Interviewees talked about recovery in terms of thinking, feeling and acting in different ways that suggested to us the potential for internal and external worlds to become, to a certain extent, reconciled. We suggest that this represents a process of recovering or, for some, discovering a sense of self where they could safely coexist in both worlds, without damage to the self or of having to retreat once again into the internal world. This understanding of recovery is represented in Fig. 2 below and described in the analysis that follows:
(Enlarge Image)
Figure 2.
Understandings of recovery in the context of lived experience of personality disorders. Inward facing arrows indicate the thoughts, feelings and actions reported by participants that suggest the potential to reconcile internally and externally experienced worlds. The intersection of the circles represents processes of recovering or discovering a sense of self that coexists in both internally and externally experienced worlds
Recovering or Discovering the Self – Reconciling the Internal and External Worlds. Interviewees talked about both a readiness to change – of being unable to carry on as before – and a sense of recognition or acceptance of 'the way they were' as necessary precursors to recovery:
I found that I was doing the same thing over and over again … unless you understand yourself I don't think that … you can recover. Really it's been a question of … being able to face myself and look at myself warts and all … 'what am I going to do about it?' … I've recognised that if I carried on thinking like that I'm just gonna keep tripping myself up and I'm never gonna have anything nice to say about myself. (Int 5)
The limitations of leading an isolated lifestyle were also acknowledged:
But I think spending too much time on my own, not going out, could be quite dangerous for me … (Int 2)
Interviewees did talk about recovery in terms of developing the skills and strategies necessary to exercise control over their lives, reflecting aspects of 'mainstream' mental health recovery. However we focus here on reporting the distinctiveness of what interviewees told us about their understandings of recovery in the context of lived experience of personality disorders. Much of this specific understanding of recovery was about finding ways of being – of thinking, feeling and acting – that enabled them to live in the outside world:
For me personally it means … sort of reintegration into the community and sort of mainstream society … to combat the feeling of alienation that I experience, maybe diminishing the frequency of self‐destructive behaviour, suicide attempts … hopefully stopping the self‐harming altogether … fewer inpatient admissions … establishing personal relationships, re-entering education and eventually finding paid employment I suppose would be the ultimate objective … (Int 4)
I've met over the past couple of years, seen people actually, not say recovering fully but actually gaining more confidence through contact with other people and actually getting out and doing things … (Int 3)
At the same time, interviewees recognised the problems that increased interaction with wider society could present them with:
… too many negative things … start to make me feel a bit unstable, so even though I'm trying to be stronger and I feel stronger maybe it wouldn't take that much to destabilise me … (Int 1)
Interviewees described the conscious choices that they had to make about how much interaction with the outside world they could cope with:
… it will require a certain amount of me hiding again but I don't have to hide from everyone … in order for me to be able to get back into normal society I'm going to have to step out of that and feel quite uncomfortable for a period of time while I adjust to it … (Int 5)
Interviewees acknowledged that the process of re-engaging, through work and wider interaction, would have to be a gradual process in order to cope with setbacks and to develop confidence:
I'm trying … to do some part time work … I couldn't go into a full-time job straightaway. It will have to be a little step at a time … I will need to build up my confidence. I've got a little bit but it will need to improve … (Int 6)
Recovery and Discovery – Doing Things Differently. Interviewees described future goals and aspirations focused on improved social interaction on a number of levels:
I'd like to re‐enter education and finish my degree 'cos I haven't quite finished that yet … maybe establish more interpersonal relationships, real friendships with people, and maybe a romantic relationship would be nice … (Int 4)
… if one could get that together and go out … just once or twice a week, go to the local pub … (Int 6)
Interviewees talked about a range of health and wellbeing changes to their lifestyle, and in particular the importance of physical activity as a means of engaging bodily with the wider world:
Healthy diet and exercise, socialising, having some sort of structure to your day, whether it's working an hour every two weeks or volunteering or, there's lots I'd want to do … (Int 3)
… just to get out and get on my bike … you can still be part of society and the world without having to communicate with people, so I find cycling really useful … (Int 2)
Recognising and avoiding situations associated with negative and destructive actions was very important to some interviewees:
… taking drink out of it and things like that and keeping myself out of potentially stressful situations sort of limits the impact of it … (Int 5)
All interviewees recognised the importance of enduring and trusting relationships, and identified positive changes they had made in terms of making and keeping friends:
I would put that down to the quality of friendships that I've made. I haven't made tons of friends or anything like that but I've made some really absolute diamond friendships … the thing that's really made a difference is being able to socialise … (Int 5)
One interviewee in particular spoke about the importance of having friendships with people who would not judge them:
I think people need friendship, they need somebody that they feel they can turn to that won't necessarily turn away from them in disgust or anything or judge them … (Int 1)
However interviewees also recognised that setbacks in recovery could result from feeling judged, rejected or not understood in their relationships:
I think if you're put in a situation where people would get to know me, I think that could have a negative effect on my recovery and not a positive one. (Int 2)
Recovery and Discovery – Feeling and Thinking Differently. In parallel, interviewees spoke of a range of internal changes – to their feelings, thoughts and sense of self – which they would like to achieve. These included being able to control and manage feelings and thoughts, and becoming more self-confident, self-assured and positive:
I'd like not to feel the way I do most of the time, there's always an underlying feeling of doom and gloom which I've just carried with me for years and years. I'd like that to not be as pronounced, not be as damaging to me, which it is, so, to change feelings definitely. There's a lot of confusion in my head, and I just get very confused, I find I can't organise thoughts and in turn I can't organise my life … (Int 3)
Some interviewees spoke about successful processes of changing the ways they thought and felt:
Usually it's only a few minutes because I have to kick in my coping mechanisms and talk to myself and say 'this is part of your illness, it'll pass in a minute', what thoughts are there that shouldn't be there or that aren't doing me any good so I have to, like, sit down, identify it, face it and then take steps to counteract it … (Int 5)
Other interviewees referred to a continuing sense of negativity, either undermining progress they had made towards recovery or inhibiting them from addressing issues of isolation:
… there's no positivity there, no sort of sense of even wanting to recover, it's just … can't be bothered, what's the point … I have a lot of fear involved that it's not going to work that I'm just not going to change, there is always that great fear … (Int 3)
Interviewees spoke about the need to balance the extreme and polarised feelings they experienced in order to maintain their recovery:
The only thing that changes is the fluctuation of my emotions so I have to bear that in mind as well and not get full of despair … so I have to sort of cushion it between getting too high and getting too low. I have to try and keep this sort of balance going which is really, really hard work … (Int 5)
Many interviewees talked about how the disconnection they experienced from their feelings inhibited their ability to make changes:
… you don't feel no achievement … they do encourage you, praise you but, with the way our minds are working we don't feel like we've done nothing … (Int 6)
Interviewees described the constant struggle to make progress as exhausting and potentially defeating:
I'm not weak but … some of these feelings are … so deeply ingrained in me that however much I try, and I am trying, I'm not sure that I can turn everything round because your history's your history, however much you try … (Int 1)
However interviewees also described what we understood to be a virtuous cycle in their recovery, where forming positive relationships could reinforce positive changes in their thoughts and feelings, and vice versa:
… a more sort of constant and solid idea of self and personal identity, it's not something you can do in isolation … by having good, positive relationships where you get feedback and they reinforce the sort of positive aspects of yourself then you're able to become more functional, more normal and integrate more easily into society … (Int 4)
I spent so many years not giving a damn about anybody … If I upset someone it would be like, that's your stuff not mine. I couldn't care less. Today I do think about other people and take other people's feelings into account … it makes me feel good when I help others … (Int 2)
Results
Through the process described above we produced a set of fifteen descriptive themes organised into three sections. The iterative process of writing and rewriting within the team – stage 6 process – resulted in a set of interpretive themes that cut across our emerging understanding of recovery. The final set of themes is illustrated in Table 2 :
In order to answer our questions about their understandings of recovery, all participants spoke in depth about their lived experience of personality disorders. It was clear that we would not be able to explore the concept of recovery without first articulating that lived experience of personality disorders. Given the lack of existing literature describing that experience, noted above, it seemed important to report that data here. We report detailed findings on supporting recovery in personality disorders services elsewhere, focussing in this paper on our aim of understanding recovery in the context of lived experience of personality disorders.
The Lived Experience of Personality Disorders
In articulating their lived experiences of personality disorders, interviewees seemed to us to be describing a continuous tension within the self between the experiences of an internal and an external world; a complexity of ambiguous, interrelating and conflicting feelings, thoughts and actions as the individual tries to live in and cope with both worlds. Interviewees reported feeling alienated by a hostile outside world and needing to isolate themselves within their internal world in order to feel safe, often at the cost of a punitive or harmful relationship with the self. This articulation of the lived experience of personality disorders is represented diagrammatically in Fig. 1 below and explored in the analysis that follows:
(Enlarge Image)
Figure 1.
The lived experience of personality disorders. Outward facing arrows indicate the polarising thoughts, feelings and actions reported by participants with respect to internally and externally experienced worlds. The intersection of the circles represents experiences of ambiguity, conflict and harm to the self
The Internal World. Interviewees told us they often experienced feelings of extreme isolation and detachment:
… very isolated, extremely isolated … I couldn't trust my own judgement, or anything like that … I get very detached. It's like I'm sort of up here looking down and 'what's happened?' (Int 5)
Interviewees recognised that this sometimes self-imposed isolation could be harmful and could lead to further feelings of alienation:
… way I see it is I isolate myself when I feel I have to, I'll go mad if I don't isolate myself and then when I isolate myself too long I feel like I am going mad anyway so I can't work out how I can survive properly … (Int 1)
Interviewees spoke about intense and polarised emotions, of rapid changes in mood, and of the unpredictability and chaos that this brought to their lives:
… it can change instantly how I'm feeling … I could be fine one minute and the next minute I would just go down, straight down … you're walking along sometimes, a trapdoor opens and you just fall through the trapdoor and you can't get back up again … (Int 3)
Interviewees spoke about feeling vulnerable, and of the panic and anxiety they experienced in their everyday lives as a result:
Well, I'm a very sort of scared person, very anxious, I panic at the slightest things sometimes … (Int 6)
Interviewees frequently referred to feeling unsure of their own sense of self; of whether or not they were 'normal':
I find I have a very uncertain sense of self, so it's hard to know, to have hope in yourself when you don't have a clear idea of who you are … (Int 4)
I think that to the day that I drop dead, whenever that is, I will still be, I don't know what normal is … (Int 1)
Interviewees also talked about not knowing what was wrong with them and of not knowing how to get on in the outside world as a result:
I didn't know what was going on. I just knew it wasn't right because my behaviour wasn't right … I spent a lot of time wondering what was wrong with me, thinking why can't I be happy or why can't I go and get a job … everything was why and I had no answers to the whys … (Int 2)
Interviewees described a negative and punitive relationship with the self, characterised by feelings of self-hatred, low self-esteem and self-criticism:
… feelings of complete inadequacy and self-loathing, self-hate and generally nothing positive … very self-critical, just blame myself for everything, just feel that I let everybody down and … it all snowballs, doesn't it? You know, 'I'm useless, I'm worthless' … (Int 3)
Often these self-critical feelings led to self-punishment, or self-destructive or high risk behaviours:
I punish myself and I hurt … my last serious attempt was last summer and I took 250 olanzapine and I stockpiled a whole lot of medication … was in intensive care for about five or six days … (Int 4)
I tend not to, when things are getting difficult, go down to the pub because … I know where that ends … I end up in a bit of a mess or … somewhere trying to score drugs … (Int 5)
The External World. Interviewees described how they perceived the external world as an unpredictable, and potentially harmful and hostile place:
I'm not happy where I live and I haven't been for a long time and I have disturbance from the neighbours and very paranoid about it … (Int 3)
… feeling that I'll be destroyed. I feel as though I live in a culture that is making me ill … (Int 1)
This perception seemed to us to be influenced by interviewees' internal worlds; external experience and internal state of mind seemed to relate in a vicious circle:
My perception of people involved in my care undergoes like a paradigm shift. The people who I once thought were caring and supportive become … tyrants who are trying to manipulate me and erode my freedom … human beings are all evil and corrupt and everyone's out to take advantage of me … (Int 4)
Most interviewees told us that they felt the only way of feeling safe was to isolate themselves from the external world:
When I get more paranoid, I isolate myself, I don't go out for weeks and months on end. I just barricade myself indoors, stay indoors … (Int 2)
However that decision to withdraw was often a dilemma, interviewees recognising that they were isolating themselves but feeling that they had little choice:
I know that anything that I don't invite into my life will have a negative impact on my mind so I choose not to do that and people can sort of sit there and go 'oh, well you're isolating yourself'. Well no, I'm actually protecting myself from a whole load of crap that's going to start going round in my head … (Int 5)
Interviewees described becoming practised at limiting their contact with the outside world as a coping strategy:
I only feel that I'm feeling better because … I don't have to engage with the world … I can go outside but then I can come home if I feel I can't cope. That sounds sort of very pathetic but actually it feels like the only way I can control my feelings … (Int 1)
Interviewees also pointed out that actual experience of stigma was behind their decisions to withdraw:
… if you imagine floating through life and not really being able to connect with anyone at all because you have to hide yourself, you have to put on a mask to show the world, that you're not mentally ill because it, there's such a stigma behind it (Int 5)
Interviewees told us about difficulties in relationships, and often conceived of how they interacted with others as a barrier to engagement with the outside world:
I think expectations … what other people might expect from you, like if you go out … instead of sitting in a corner you've got to participate in playing a game of darts or a game of pool but I'm quite happy in my corner with my drink of coke … you don't live up to their expectations then, that's probably why I haven't got any friends … (Int 6)
Interviewees spoke of a sense of failing in the outside world as a result of the difficulties and struggles they experienced with fitting in:
At the moment, someone asks what have you done with your life, you know, I have done absolutely nothing, I left school at twelve, drink, drugs, prison, come out, a locked ward, that's it. I can't say that to somebody that's been to university, has got a good job … I said once in an AA meeting about being in prison and someone went 'argh, that's disgusting', and that fucking kicked me in the teeth. (Int 2)
Diagnosis. We collected extensive data on interviewees' experiences of, and attitudes towards diagnosis. We report here examples that both reinforce the lived experience of personality disorders we have illustrated above, and conversely enable the processes of recovery described in the following section. Interviewees suggested that receiving a diagnosis of personality disorder could increase their isolation from the wider world because of the stigma from friends, family and medical professionals that resulted:
… my GP, her attitude changed completely when I got this diagnosis and she was much more guarded and wary of me … when I finally disclosed that I was BPD … my friends stopped returning my calls … (Int 4)
Ideas about untreatability present in the literature, which potentially impact on expectations for recovery, were also reflected in interviewee accounts:
… having a diagnosis of borderline personality disorder I'm constantly told by people that I'm not going to get any better … my doctor said: 'you won't get better after this' … (Int 5)
There was ambivalence towards receiving a diagnosis, with interviewees also reporting that the knowledge and information they received as a result helped them to understand aspects of their experience:
… before I found out my diagnosis I was floating around thinking 'what's wrong with me … This isn't just depression?' … as soon as I found out … I started reading up on it and it got me to a point where I can understand myself … helped me to accept myself, which then increases self-esteem, self-value … (Int 5)
Understandings of Recovery in the Context of Lived Experience of Personality Disorders
We asked interviewees what recovery meant to them, and they answered very much in the context of the lived experience of personality disorders described above. Interviewees talked about recovery in terms of thinking, feeling and acting in different ways that suggested to us the potential for internal and external worlds to become, to a certain extent, reconciled. We suggest that this represents a process of recovering or, for some, discovering a sense of self where they could safely coexist in both worlds, without damage to the self or of having to retreat once again into the internal world. This understanding of recovery is represented in Fig. 2 below and described in the analysis that follows:
(Enlarge Image)
Figure 2.
Understandings of recovery in the context of lived experience of personality disorders. Inward facing arrows indicate the thoughts, feelings and actions reported by participants that suggest the potential to reconcile internally and externally experienced worlds. The intersection of the circles represents processes of recovering or discovering a sense of self that coexists in both internally and externally experienced worlds
Recovering or Discovering the Self – Reconciling the Internal and External Worlds. Interviewees talked about both a readiness to change – of being unable to carry on as before – and a sense of recognition or acceptance of 'the way they were' as necessary precursors to recovery:
I found that I was doing the same thing over and over again … unless you understand yourself I don't think that … you can recover. Really it's been a question of … being able to face myself and look at myself warts and all … 'what am I going to do about it?' … I've recognised that if I carried on thinking like that I'm just gonna keep tripping myself up and I'm never gonna have anything nice to say about myself. (Int 5)
The limitations of leading an isolated lifestyle were also acknowledged:
But I think spending too much time on my own, not going out, could be quite dangerous for me … (Int 2)
Interviewees did talk about recovery in terms of developing the skills and strategies necessary to exercise control over their lives, reflecting aspects of 'mainstream' mental health recovery. However we focus here on reporting the distinctiveness of what interviewees told us about their understandings of recovery in the context of lived experience of personality disorders. Much of this specific understanding of recovery was about finding ways of being – of thinking, feeling and acting – that enabled them to live in the outside world:
For me personally it means … sort of reintegration into the community and sort of mainstream society … to combat the feeling of alienation that I experience, maybe diminishing the frequency of self‐destructive behaviour, suicide attempts … hopefully stopping the self‐harming altogether … fewer inpatient admissions … establishing personal relationships, re-entering education and eventually finding paid employment I suppose would be the ultimate objective … (Int 4)
I've met over the past couple of years, seen people actually, not say recovering fully but actually gaining more confidence through contact with other people and actually getting out and doing things … (Int 3)
At the same time, interviewees recognised the problems that increased interaction with wider society could present them with:
… too many negative things … start to make me feel a bit unstable, so even though I'm trying to be stronger and I feel stronger maybe it wouldn't take that much to destabilise me … (Int 1)
Interviewees described the conscious choices that they had to make about how much interaction with the outside world they could cope with:
… it will require a certain amount of me hiding again but I don't have to hide from everyone … in order for me to be able to get back into normal society I'm going to have to step out of that and feel quite uncomfortable for a period of time while I adjust to it … (Int 5)
Interviewees acknowledged that the process of re-engaging, through work and wider interaction, would have to be a gradual process in order to cope with setbacks and to develop confidence:
I'm trying … to do some part time work … I couldn't go into a full-time job straightaway. It will have to be a little step at a time … I will need to build up my confidence. I've got a little bit but it will need to improve … (Int 6)
Recovery and Discovery – Doing Things Differently. Interviewees described future goals and aspirations focused on improved social interaction on a number of levels:
I'd like to re‐enter education and finish my degree 'cos I haven't quite finished that yet … maybe establish more interpersonal relationships, real friendships with people, and maybe a romantic relationship would be nice … (Int 4)
… if one could get that together and go out … just once or twice a week, go to the local pub … (Int 6)
Interviewees talked about a range of health and wellbeing changes to their lifestyle, and in particular the importance of physical activity as a means of engaging bodily with the wider world:
Healthy diet and exercise, socialising, having some sort of structure to your day, whether it's working an hour every two weeks or volunteering or, there's lots I'd want to do … (Int 3)
… just to get out and get on my bike … you can still be part of society and the world without having to communicate with people, so I find cycling really useful … (Int 2)
Recognising and avoiding situations associated with negative and destructive actions was very important to some interviewees:
… taking drink out of it and things like that and keeping myself out of potentially stressful situations sort of limits the impact of it … (Int 5)
All interviewees recognised the importance of enduring and trusting relationships, and identified positive changes they had made in terms of making and keeping friends:
I would put that down to the quality of friendships that I've made. I haven't made tons of friends or anything like that but I've made some really absolute diamond friendships … the thing that's really made a difference is being able to socialise … (Int 5)
One interviewee in particular spoke about the importance of having friendships with people who would not judge them:
I think people need friendship, they need somebody that they feel they can turn to that won't necessarily turn away from them in disgust or anything or judge them … (Int 1)
However interviewees also recognised that setbacks in recovery could result from feeling judged, rejected or not understood in their relationships:
I think if you're put in a situation where people would get to know me, I think that could have a negative effect on my recovery and not a positive one. (Int 2)
Recovery and Discovery – Feeling and Thinking Differently. In parallel, interviewees spoke of a range of internal changes – to their feelings, thoughts and sense of self – which they would like to achieve. These included being able to control and manage feelings and thoughts, and becoming more self-confident, self-assured and positive:
I'd like not to feel the way I do most of the time, there's always an underlying feeling of doom and gloom which I've just carried with me for years and years. I'd like that to not be as pronounced, not be as damaging to me, which it is, so, to change feelings definitely. There's a lot of confusion in my head, and I just get very confused, I find I can't organise thoughts and in turn I can't organise my life … (Int 3)
Some interviewees spoke about successful processes of changing the ways they thought and felt:
Usually it's only a few minutes because I have to kick in my coping mechanisms and talk to myself and say 'this is part of your illness, it'll pass in a minute', what thoughts are there that shouldn't be there or that aren't doing me any good so I have to, like, sit down, identify it, face it and then take steps to counteract it … (Int 5)
Other interviewees referred to a continuing sense of negativity, either undermining progress they had made towards recovery or inhibiting them from addressing issues of isolation:
… there's no positivity there, no sort of sense of even wanting to recover, it's just … can't be bothered, what's the point … I have a lot of fear involved that it's not going to work that I'm just not going to change, there is always that great fear … (Int 3)
Interviewees spoke about the need to balance the extreme and polarised feelings they experienced in order to maintain their recovery:
The only thing that changes is the fluctuation of my emotions so I have to bear that in mind as well and not get full of despair … so I have to sort of cushion it between getting too high and getting too low. I have to try and keep this sort of balance going which is really, really hard work … (Int 5)
Many interviewees talked about how the disconnection they experienced from their feelings inhibited their ability to make changes:
… you don't feel no achievement … they do encourage you, praise you but, with the way our minds are working we don't feel like we've done nothing … (Int 6)
Interviewees described the constant struggle to make progress as exhausting and potentially defeating:
I'm not weak but … some of these feelings are … so deeply ingrained in me that however much I try, and I am trying, I'm not sure that I can turn everything round because your history's your history, however much you try … (Int 1)
However interviewees also described what we understood to be a virtuous cycle in their recovery, where forming positive relationships could reinforce positive changes in their thoughts and feelings, and vice versa:
… a more sort of constant and solid idea of self and personal identity, it's not something you can do in isolation … by having good, positive relationships where you get feedback and they reinforce the sort of positive aspects of yourself then you're able to become more functional, more normal and integrate more easily into society … (Int 4)
I spent so many years not giving a damn about anybody … If I upset someone it would be like, that's your stuff not mine. I couldn't care less. Today I do think about other people and take other people's feelings into account … it makes me feel good when I help others … (Int 2)