“I’m in a more recovered recovery than before (…) It’s getting better, but not in the way I thought it would, at all. It’s always about how things aren’t going like I thought they would. Because maybe I have very high expectations or thoughts about how things should be…but let me, then...I’m thinking, why shouldn’t I expect a lot from life?” (Female, 30s)
Viktoria is one of the 20 people we interviewed for this study (see Table 2 for demographic and clinical information). She is a young adult who first experienced psychosis 10 years ago. Today, she has her own apartment, a social network, a job she likes and no longer experiences psychosis. From the outside she appears clinically recovered. In her own esteem, she is in the beginning of her personally defined recovery process because she is considering taking “a leap” to pursue a long-term educational goal she was initially advised against. She is asking both herself and those around her why she shouldn’t expect a lot from her life.
Table 2 Demographic and clinical characteristics of study sample (n=20)
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Participants
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Demographic
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Gender, female
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11
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Age (Mdn, range)
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46 (28-73)
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Norwegian origin
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19
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In relationship
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9
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Have children
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11
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Full-time work/study
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8
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Part-time work/study and disability pension
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2
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Retired, aged based pension
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3
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Full-time disability pension
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7
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Clinical
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Diagnosis, 10 years
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Schizophrenia spectrum
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14
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Bipolar spectrum
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6
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Current use of medication*
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14
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In current treatment
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9
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*anti-psychotic/mood-stabilizer
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All participants reported that they considered themselves in recovery according to their subjective definition (32). By criteria utilized in the quantitative studies (4,29), three were in clinical recovery only, ten in personal recovery only, and seven in both types of recovery. For most participants recovery was described as an enduring non-linear process of creating a good everyday life. Some expressed that they have been in their definition of recovery shortly after their first episode, and some that this process has taken a decade or more. A few in long-term clinical recovery described themselves as fully recovered and their lived experience belonging to the past. Over half of the participants defined recovery as being “symptom-free”, “stable”, or “well-functioning”, although few reported that this was sufficient for long-term recovery. Several also defined recovery in line with terms such as “acceptance” or “independence/empowerment”.
The overarching result was the participants personal agency and how they viewed themselves as the main facilitators of long-term recovery. Based on the thematic analysis, we generated five themes (see Figure 1) of important processes promoting long-term recovery in FEP (see supplementary material for additional representative quotes for each theme). 1. Doing recovery in everyday life 2. Re-evaluating risk, 3. Becoming a caregiver, 4. Negotiating normality, and 5. Owning and sharing your story.
Figure 1 Five themes of facilitators of long-term recovery in FEP
3.1 Theme 1: Doing recovery in everyday life
This theme illustrates that all participants have utilized their agency to arrange a good everyday life. The recovery strategies participants employed differed greatly and included: exercise, keeping routines, sleep, stress management, appreciating nature, spirituality, and self-monitoring (See Table 3 for selection of participants’ recovery strategies). However, beyond individual strategies, we found that almost all participants described recovery as something that they were actively doing in their day-to-day life.
We learned the most about everyday recovery from participants that spend their days at home. Dorthe had an engaging career when she first experienced psychosis. She shared that she used to be ashamed of watching daytime TV when she was no longer working, but she now uses TV to feel up-to-date in conversation. Her recovery process has entailed finding meaning outside employment, accepting herself and actively collecting what brings her joy:
“it’s about seeing what brings you recovery. And then follow those tracks. Grab a hold of what is positive and people that are good for you.” (Female, 50s)
Like Dorthe, underlying all participant accounts was agency and ownership over their own efforts for recovery, and this recovery largely occurred in their everyday lives.
3.2 Theme 2: Re-evaluating risk
This theme captures that in long-term recovery several participants have taken positive risks to follow what they expected out of life, but how far along they were in this process differed. Although most participants appeared content with their lives, about half seemed more future-oriented and less concerned with risk of relapse and stress in search of what brought them meaning. William described his creative career as a “meaning hook” that was “something to hold on to” after his first hospitalization. This career is also unpredictable and highly stressful:
“I am working on four different projects at the same time (…) it’s probably because I have crazy expectations of myself, and I always have.” (Male, 30s)
William stated that he has always been driven. However, several participants demonstrated the temporal aspect of this theme as they had more recently begun to reconsider their limitations, a term several participants utilized. Dag previously met all criteria for clinical recovery. However, he expressed that he was unhappy and, in his own words, drifting along on an “inflatable pink flamingo” of life because he thought he should “accept limitations”. He has recently left his stable employment and living situation to pursue a more subjectively meaningful path and is, by his own admission, finally in a personal recovery process:
“It’s been a pretty drastic improvement…I’ve actually begun to look at myself and all the unhealthy coping mechanisms through the years.” (Male, 30s)
A small group of participants stated that they had some goals or dreams they never followed, but that they are now considering “taking a leap” like Victoria who was introduced in the beginning. Like her, these participants expressed that they feared experiencing stress and related relapse, and that they did not trust their own judgement about minor life choices. Although she is happy with her life, Dorthe from the above theme is considering returning to the work force, but is unsure because her provider cautioned her against it in early recovery:
“I have been warned by my psychiatrist to think like that (...) I could get sick again if I entered the job market. It says so in my papers at least. In my discharge papers it said that I should avoid stress, so I would have a better prognosis (…)I can’t handle stress” (Female, 50s)
For several participants, it seemed that an important facet of long-term recovery was to develop from living a more limited life focused on avoiding stress and relapse, to gradually testing their limitations and engage in some risk in pursuit of meaning.
3.3 Theme 3: Becoming a caregiver
This theme illustrates a development in how participants related to their social support network. Many participants had been supported by family in early recovery, and most had a social network of people who were important to them, such as parents, partners, and friends. However, when reflecting on the role of social support in long-term recovery, most participants highlighted their role as a parent, partner or friend and support to others. Almost all participants had developed from being primarily cared for, to now also becoming caregivers for others, such as children, friends, or through social justice or volunteer work.
Participant Iben has an active social life, but when asked about the role of her friends in recovery, she responded: “friends are not therapists”. Instead, what appeared important for her long-term recovery was her self-professed “care-gene” and to take care of her aging parents who took care of her during her first episode many years ago. Many participants discussed that having children to care for also helped them take better care of themselves and provided a sense of purpose.
For several participants, offering care and support to others was therefore a turning point in their recovery. Emil has been taken care of by treatment services and family for a long time and has felt shame for receiving a disability pension, but helping friends and family makes him feel more included:
“Be a resource in your community, be a brother or sister, father or mother (…) I mean something to other people, I have value…I’m not on the outside” (Male, 30s)
In addition to providing meaning and purpose, taking care of others therefore seemed to have granted many an identity beyond that of a service-user or patient. This identity and positive role appeared to demonstrate for many participant that they were valuable citizens.
3.4 Theme 4: Negotiating normality
This theme captures an internal diversity in how participants view themselves in relation to social context, and what kind of lives they wished to live. Over half of the participants reflected on what is ordinary or normal, a word brought up by several. Most of these participants expressed that they wished to be seen as normal and catch up to peers in developmental milestones after their experiences with psychosis or mania left them feeling disconnected from others. Magnus struggled as a teenager, reported that he belonged to a rough crowd and eventually dropped out of high school. He expressed feeling behind his peers after spending some years in treatment and work-placement programs. As an adult, he has worked hard to achieve a life he described as “normal”, but due to his past he is aware that there are many ways to live life and many paths to recovery:
“an important part of it is to be, maybe it’s a bad word in psychiatry, but to be ‘normal’, seriously…I just want to be very average, actually. I just want an ordinary steady job, and a family and a house and a garden and a car and…(…) but if you want to be a bohemian, musician, that’s also a way to be better.” (Male, 20s)
This theme is titled negotiating normality because we also noticed a smaller group of participants who seemed to value a more alternative lifestyle and reject normality. For these participants figuring out who they were and how they wished to live their lives was a large part of their long-term recovery. One participant defined recovery as: “freeing yourself from social norms.” Another participant, Monica, described that she had frequently felt pushed by treatment providers to conform and live or act a certain way:
“Who gets to decide who has a good life, you know?” (Female, 50s)
For Geir, reflecting on his identity and what is “normal” or not has been a longer process. He became concerned with how he was perceived by others after his first psychotic episode, but described that it has been important for his recovery to worry less about what others think:
“After a while, I have stopped trying to figure out what is normal or not, people are just different.” (Male, 40s)
From participant accounts, concerns about normality or being ordinary appeared linked to social inclusion and a desire to belong. Participant Liv has struggled for most of her adult life and has often felt that she did not belong anywhere. She has made great changes to her life in recent years and has discovered how important social inclusion is for her recovery. Liv stated that filling out a questionnaire-item about belonging during the follow-up assessment made her realize that she finally felt included:
“I was so happy about that question: do you feel like part of society? Yes! (elated). Because I didn’t before…It’s lovely to be an ordinary person in society!” (Female, 60s)
For the participants, social inclusion meant many things, including the freedom to express their non-majority culture, emotions, or spirituality without being judged as psychotic or manic. This theme is therefore not just about identity or accepting who you are, but also about the importance of being accepted and included by others for long-term recovery in FEP.
3.5 Theme 5: Owning and sharing your story
This theme illustrates that almost all participants have created a cohesive narrative about their lived experience that they could share with others, as they did in the interviews themselves. It appeared that openness or sharing their story was crucial for their recovery. Several participants discussed strategic openness, when to be open and what to say to receive support or necessary accommodations, and that being open allowed them to connect to peers with the same experiences. In addition, some reflected on how they welcomed the increased openness about mental illness in society.
However, it appeared that a crucial prerequisite of this openness was feeling secure and accepting their experiences, but this was for many hindered by public stigma. Almost all participants with schizophrenia disliked their diagnostic label and worried that people would judge them if they disclosed it:
“I’ve never liked that diagnosis, that schizophrenia diagnosis (…) I’ve never had a clear sentence for how I’m going to say that I am sick(…)I have never really accepted it. I’ve struggled a lot with that. So, there’s something about owning your story when you’re supposed to talk about it.” (Female, 30s)
Participant Lars felt that the label of schizophrenia has affected how he views himself and is viewed by others:
“To get that label on you is also a burden …before I got that label, I wasn’t that sick (…) People get afraid, there’s a lot of talk about madness. (…) It’s not easy when you’ve had problems with psychosis and stuff, and you’re not able to be honest. Having two things to handle, an outer mask and inner turmoil…to let that go is important.” (Male, 40s)
A few participants with schizophrenia also rejected the stigma against their diagnosis and it seemed to have helped them accept themselves:
“Why should I care about that (schizophrenia diagnosis), I know I’m a good person in society, what more can you expect of me?” (Male, 40s)
As Lars demonstrates, owning and accepting one’s story appears important for recovery, because it is both taxing and isolating to feel that you must hide who you are due to misconceptions and prejudice.
Table 3 Participant recovery strategies
Quotes within theme 1: Doing recovery in everyday life
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“You get a lot of experience from struggling. Also recovery. I mean, you get recovery from all the experience you have with struggling(...) Recovery is finding good techniques for mastering life.(…) Less stress, try to be in the here and now. And don’t create worries that aren’t here yet, worry when the time comes to worry. (Female, 30s)
“try to have an active life and do what one is capable of.” (Female, 50s)
“I didn’t quit because I know that there are people walking around that are doing ok. It’s not the right strategy for everyone, but for me it works to bite down on the shin (idiom) and keep on until things get better.” (Male, 40s)
“I’ve always exercised (…) It means a lot for the mind…in my thoughts. It gives me more space and I feel better. Life gets calmer and you’re better equipped to handle thoughts, they can just come and go and you can handle it no matter what. Then there’s less stress.” (Female, 40s)
“I have a planner, and I try to schedule the week (…) I try to have an activity every day. Changing tires, emptying the dishwasher, vacuum, clean the bathroom. And find a rhythm, structure, structure, structure.” (Male, 30s)
“On with your shoes, on with your jacket, go out for a walk… What’s been the most helpful for the brain is to go out for a walk.” (Female, 60s)
“When I meditate and find that space, when I focus on what makes me happy…then the racing thoughts don’t start as easily(…) if you can create that space so the shame lets go then it’s not so bad to be in pain, then it’s not so bad that you can’t do everything you wanted.” (Female, 50s)
“I’ve started to notice what’s around me. The joy I feel on a fall morning is so deep that it’s hard to explain.” (Male, 40s)
“Recovery is that I can get up in the morning(…) It means that you’re keeping up with something. That you can manage a 50% job, or some program, or that you’re going somewhere and taking a class or whatever. That you’re headed somewhere, in a way. (…) I know I can work more than 50%, but I think 50 is nice for getting some peace and for my concentration…and that I need some rest between activities and because I still need to be considerate to myself every day.” (Female, 20s)
“The first medicine is to get enough sleep, right. To calm the mind and get some rest.” (Male, 40s)
“you have to let yourself collapse. If you have a barn that’s rotten through to the foundation you actually have to tear that shit down and build a new one.” (Male, 30s)
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