The lived experience of recovery in borderline personality disorder: a qualitative study

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DOI: 10.1186/s40479-019-0107-2
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Abstract
Background: The concept of recovery in borderline personality disorder (BPD) is not well defined. Whilst clinical approaches emphasise symptom reduction and functioning, consumers advocate for a holistic approach. The consumer perspective on recovery and comparisons of individuals at varying stages have been minimally explored. Method: Fourteen narratives of a community sample of adult women with a self-reported diagnosis of BPD, were analysed using qualitative interpretative phenomenological analysis to understand recovery experiences. Individuals were at opposite ends of the recovery continuum (seven recovered and seven not recovered). Results: Recovery in BPD occurred across three stages and involved four processes. Stages included; 1) being stuck,2) diagnosis, and 3) improving experience. Processes included; 1) hope, 2) active engagement in the recovery journey, 3) engagement with treatment services, and 4) engaging in meaningful activities and relationships.Differences between individuals in the recovered and not recovered group were prevalent in the improving experience stage. Conclusion: Recovery in BPD is a non-linear, ongoing process, facilitated by the interaction between stages and processes. Whilst clinical aspects are targets of specialist interventions, greater emphasis on fostering individual motivation, hope, engagement in relationships, activities, and treatment, may be required within clinical practice fora holistic recovery approach
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R E S E A R C H A R T I C L E Open Access
The lived experience of recovery in
borderline personality disorder: a
qualitative study
Fiona Y. Y. Ng
1,2*
, Michelle L. Townsend
2,3
, Caitlin E. Miller
2,3
, Mahlie Jewell
4
and Brin F. S. Grenyer
2,3
Abstract
Background: The concept of recovery in borderline personality disorder (BPD) is not well defined. Whilst clinical
approaches emphasise symptom reduction and functioning, consumers advocate for a holistic approach. The
consumer perspective on recovery and comparisons of individuals at varying stages have been minimally explored.
Method: Fourteen narratives of a community sample of adult women with a self-reported diagnosis of BPD, were
analysed using qualitative interpretative phenomenological analysis to understand recovery experiences. Individuals
were at opposite ends of the recovery continuum (seven recovered and seven not recovered).
Results: Recovery in BPD occurred across three stages and involved four processes. Stages included; 1) being stuck,
2) diagnosis, and 3) improving experience. Processes included; 1) hope, 2) active engagement in the recovery
journey, 3) engagement with treatment services, and 4) engaging in meaningful activities and relationships.
Differences between individuals in the recovered and not recovered group were prevalent in the improving
experience stage.
Conclusion: Recovery in BPD is a non-linear, ongoing process, facilitated by the interaction between stages and
processes. Whilst clinical aspects are targets of specialist interventions, greater emphasis on fostering individual
motivation, hope, engagement in relationships, activities, and treatment, may be required within clinical practice for
a holistic recovery approach.
Keywords: Borderline personality disorder, Recovery, Lived experience, Qualitative
Background
Recovery in borderline personality disorder (BPD) has
predominantly been viewed in the context of symptom
improvement and no longer meeting diagnostic criteria.
Longitudinal studies have demonstrated that symptom
remission is a common occurrence, with remission rates
ranging between 33 and 99% [1]. Personal recovery how-
ever, adopts a holistic stance and views recovery as a
process rather than a fixed outcome [2,3]. Conceptual
frameworks of personal recovery have synthesised the
stages across the transtheoretical model of change, and
processes into the CHIME framework (connectedness,
hope, identity, meaning and empowerment) [4]. The
application of personal recovery to individuals with BPD
requires further exploration [5].
Qualitative studies examining the experience of individ-
uals with personality disorder describe recovery as involv-
ing the reconciliation of self and other representations,
fostered through interpersonal relationships and integra-
tion within the community [6,7]. These views were
similarly identified by Castillo and colleagues [8]who
described recovery as a hierarchical process, starting from
the development of healthy attachment patterns, progres-
sing to a state of transitional recovery. This process
encompassed stages including, the sense of belonging, and
development of hope, goals, identity and roles [8]. These
stages were similar to the personal goals by Katsakou and
colleagues [2], which included aspects associated with
regulating emotions and other symptoms. These findings
were further confirmed in a study of treatment goals of
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* Correspondence: fiona.ng@nottingham.ac.uk
1
School of Health Sciences, Institute of Mental Health, University of
Nottingham, Nottingham, UK
2
School of Psychology, University of Wollongong, Wollongong, Australia
Full list of author information is available at the end of the article
Ng et al. Borderline Personality Disorder and Emotion Dysregulation (2019) 6:10
https://doi.org/10.1186/s40479-019-0107-2
individuals seeking treatment for BPD, where goals were
identified to extend beyond the reduction of symptoms
and included improving relationships, developing a sense
a self and improving ones sense of wellbeing [9]. Whilst
these findings indicate the treatment targets of manualised
interventions may be narrow, there are innate difficulties
in understanding recovery in personality disorders [7],
given the similarities between clinical phenomenology and
domains of personal recovery. The current changes to the
conceptualisation of personality disorder from a categor-
ical to dimensional approach, focusing upon individual
traits, severity, and functioning, provides an opportunity
to more fully integrate individual perspectives into treat-
ment [10].
The perspectives of individuals accessing specialist
treatment have been well represented within the litera-
ture. While important, a broader approach to include
individuals who do not access specialist services, such as
who have difficulty accessing services or no longer
require services may provide a more representative view.
This coincides with calls to further understanding the
experiences of people who are at the opposite ends of
recovery [11]. Therefore, this study aims to understand
the experience and conceptualisation of recovery in
individuals with BPD who are at varying stages of the
recovery process. Comparisons between individuals in
the recovered and not recovered groups were made to
illustrate differences.
Method
Participants and inclusion
Individuals were initially recruited to take part in an
online survey, via mental health organisations and social
media, adapting methods used by previous studies of
experience in personality disorder [12]. The studys
inclusion criteria was based on the recognition in the
wider literature that recovery may occur across stages
and is fluctuating in nature (Andresen et al., 2003). A
longitudinal study of individuals with schizophrenia
identified that half the sample did not progress past the
first stage (overwhelmed by the disability), and no indi-
viduals attained the final stage of recovery (living be-
yond the disability) within the two-year follow-up
period [11]. Findings from a study examining recovery
in BPD similarly identified the final stage (recovered)to
be more uncertain [2]. Therefore, the perspectives of
individuals at the extreme ends may be important to
understand in order to capture what the recovery
spectrum in BPD may entail.
Following completion of an online survey, researchers
grouped individuals into one of four groups identified by
recovery and diagnostic status. Recovery status was
obtained through asking individuals to define recovery
in BPD and identification with their personal definition.
Diagnostic status was determined through the McLean
Screening Instrument for Borderline Personality
Disorder (MSI-BPD) [13]. The MSI-BPD is a 10-item
self-report screening measure, where a score of 7 or
greater indicates the high likelihood of meeting DSM-5
criteria for BPD. The MSI-BPD has good psychometric
properties with high sensitivity (0.81), specificity (0.85)
and reliability (alpha = 0.74) [13]. The narratives of indi-
viduals who self-identified with being recovered and no
longer met criteria for BPD (recovered group), and indi-
viduals who did not self-identify with being recovered
and met criteria for BPD (not recovered group) were
included in the study. Individuals were further matched
on age, gender, and treatment history. Narratives were
included into the study until thematic saturation was
reached. This resulted in the inclusion of 14 individual
narratives (n= 7 recovered group and n = 7 not recov-
ered group). The study was approved by the University
of Wollongong Social Sciences Human Research Ethics
Committee (HE16/215) and all individuals provided
informed consent.
Data analysis
Semi-structured interviews following a topic guide were
conducted. The guide provided general prompts for the
interviewer and was refined following consultation with
a consumer advisory committee (Additional file 1). The
interviewer asked individuals to describe their first expe-
riences with BPD, current life, views of recovery, and
experience of treatment and supports. Interviews were
audio recorded, transcribed verbatim and entered into
NVivo 11 for data analysis.
Interpretive phenomenological analysis (IPA) was used
as the overarching methodology to understand individ-
ualsexperience and the ascribed meaning associated
with the recovery journey in BPD [14]. Smaller sample
sizes are recommended to gain in-depth understanding
[14]. An inductive approach outlined by Smith and
colleagues [14] was used to understand the emergent
themes and the relationship between themes. Firstly,
researchers immersed themselves in the narrative by
reading transcripts, whilst free coding to gain an over-
arching understanding of the data. Secondly, free codes
were coded into emergent themes summarising excerpts
of individuals narratives. Emergent themes were then
clustered into superordinate themes to describe individ-
ualsexperiences. This process was supported by discus-
sions by the research team, where discrepancies between
the team were resolved via consensus. Two transcripts,
which represented over 10% of the data were coded by
two independent raters (FN and CM) (inter-rater reli-
ability = 91%). The remaining data was independently
coded by one researcher (FN). The names of individuals
have been de-identified to their participant number for
Ng et al. Borderline Personality Disorder and Emotion Dysregulation (2019) 6:10 Page 2 of 9
confidentiality purposes. Individuals in the recovered
group are denoted with Rand those who are not recov-
ered are denoted with NR. Once the coding was deter-
mined by the researchers, the findings were discussed
with a member of the consumer advisory committee,
whose feedback was integrated to strengthen the paper
(MJ).
Results
A total of 171 individuals provided contact details for
follow-up from the online survey, where 108 individuals
were contacted. Thirty-nine individuals completed the
telephone interview. Using the studys inclusion criteria,
14 individual narratives (7 recovered and 7 not recov-
ered) were included in the study. All individuals in this
study were female with an average age of 33.36 years
(SD = 10.26). The majority of individuals were from Aus-
tralasia, with one individual from the Middle East. There
were no significant differences on socio-demographic
characteristics between the two groups. Comparison of
socio-demographic characteristics of individuals are pro-
vided in Table 1.
Stages of recovery in borderline personality disorder
Recovery in BPD occurred across three core stages, in-
cluding; 1) being stuck, 2) diagnosis, and 3) improving
experience. Differences between individuals in the recov-
ered and not recovered groups were observed in the
final stage of recovery continuum. The movement be-
tween stages fluctuated, therefore narratives were
discussed from a current or retrospective stance. A
graphical representation of the stages and processes of
recovery in BPD is depicted in Fig. 1.
Being stuck
This stage was characteristic of all individuals when first
experiencing symptoms of BPD. Individuals did not have
a clear conceptualisation of their experiences and de-
scribed being stuckas a state of floundering, getting
bounced in and out of hospitalI was lacking in therapy
and not really engaging in services(JTR191-R). An indi-
viduals emotional intensity was identified to impact
upon daily living and was noted to extend beyond the
realms of normal experience, where emotions are so raw
and powerful, they drove everything. I had no insight
whatsoever into what I was doing. I didnt know who I
was, what I was doing or why. I reacted to everything in
an unhealthy way(JTR280-R). Reports of maladaptive
coping strategies such as self-harm or repeated suicide
attempts were prevalent at this stage.
Negative experiences from childhood and adolescence,
such as bullying or abuse, was reported to affect an indi-
viduals perception about self and others. For example
BPD can be rooted in childhood traumaI was taught
it was always my fault as a child. Being in a relationship
now with the same thing happen, my brain will assume,
it is my fault(JTR051 NR). The enduring nature was
also noted in interpersonal difficulties, such that even at
six years old, I had that instable personalityNot hav-
ing any kind of self-worth and switching from one friend
Table 1 Comparison of Socio-Demographic Participant Characteristics
Variable Statistic Total (N= 14) Recovered Group (n= 7) Not Recovered Group (n= 7) t (p) or χ
2
Age M (SD) 33.36 (10.26) 33.43 (11.43) 33.29 (9.88) 0.03 (0.98)
Range R = 1852 R = 1852 R = 2246
Education (years) M (SD) 14.29 (1.94) 14.29 (2.29) 14.29 (1.70) 0.00 (1.00)
Range R = 1116 R = 1116 R = 1116
Employment status
Engaged in paid work % (n) 42.9 (6) 42.9 (3) 42.9 (3) 1.14 (0.57)
Relationship Status
Single % (n) 64.3 (9) 57.1 (4) 71.4 (5) 0.31 (0.58)
In relationship % (n) 35.7 (5) 42.9 (3) 28.6 (2)
Treatment Length (years) M (SD) 12.68 (6.72) 9.93 (9.47) 15.43 (5.00) 1.63 (0.13)
Range R = 224 R = 615 R = 921
Age of Onset M (SD) 9.71 (3.58) 10.57 (3.55) 8.86 (3.67) 0.36 (0.73)
Range R = 415 R = 615 R = 414
Age of Diagnosis M (SD) 25.57 (10.14) 24.57 (9.47) 26.57 (11.44) 0.89 (0.39)
Range R = 1545 R = 1644 R = 1545
Gap between Onset and Diagnosis M (SD) 15.86 (10.88) 14.00 (10.79) 17.71 (11.50) 0.62 (0.55)
Range R = 638 R = 738 R = 634
Note. No significant differences between recovered and not recovered groups
Ng et al. Borderline Personality Disorder and Emotion Dysregulation (2019) 6:10 Page 3 of 9
to another depending on what my needs were and how
that person was feeling…’ (JTR239 R).
Unsuccessful attempts at seeking help for mental
health concerns was also characteristic during this stage.
Misdiagnosis of other mental health concerns, such as
depression, anxiety and bipolar disorder, were a common
experience. Individuals reported these diagnoses did not
encapsulate the severity of their experience, as it felt
much worse but they told me my problems are mild and
not an issue(JTR051 NR). The knowledge of health
professionals and the ability to access effective treat-
ments were viewed to be crucial for an individual to
move on from the being stuckphase.
Diagnosis
Receiving a diagnosis of BPD was identified to be a turn-
ing point in assisting individuals to conceptualise their
experiences and emotional intensity. Diagnosis provided
individuals a narrative to describe what was going on,
that I wasnt alone and other people had experienced
this as well(JTR011 R), giving individuals a sense of
validation and relief, which assisted with progression in
the recovery journey. The impact of delayed or
mis-diagnosis was highlighted in the length of time
taken to receive a diagnosis of BPD, as diagnosis assisted
some individuals to gain access to evidence based treat-
ment for BPD. Non-acceptance or disinterest in the
diagnosis was reported by a minority of individuals, I
didnt accept the borderline diagnosis. I wasnt interested
and no one was interested in talking to me about it
but I understood what bipolar was and thought that did
seem to fit(JTR239 R). Some participants highlighted
the immediate need for information about BPD to con-
textualise the diagnosis, as the worst thing is when
people are not given any information when they are
diagnosed with BPD.(JTR280 R). Whilst knowledge
was predominately acquired from engagement with
health services, some individuals identified their own ef-
forts to gain knowledge, I did a lot of reading once I got
the diagnosis. It really made sense(JTR011 R). How-
ever, the prevalence of stigma and discrimination as-
sociated with the diagnosis of BPD promoted negative
experiences, where Ive had some really traumatic ex-
periencesasaresultofhavingthediagnosisIno
longer seek help if Im in crisis, because I know that
Ill get treated badly and be more stressed than if I
didnt do anything...I feel like I donttrustthesystem
(JTR051 NR).
Improving experience
Developing greater awareness of emotions and of self
and others was described as a core stage and influencer
of recovery. Three domains were associated with this
stage including 1) Developing Greater Awareness of
Emotions and Thoughts, 2) Strengthening Sense of
Self, and 3) Understanding the Perspectives of Others.
These domains were not mutually exclusive, yet the
progression made in this stage differed between
individuals.
Individuals conceptualisation of recovery indicated that
there was skepticism surrounding the amelioration of
symptoms. Recovery was considered an ongoing journey
with elements of survival, resilience and self-management.
For example,it can be managedIdont think the symp-
toms will ever 100% disappear forever. Theyll always be
there to some degree in the background. I hope I get to a
point where it doesnt impact on your life in a negative
way(JTR051 NR). This was echoed by individuals who
identified with being recovered as, I got to a point where I
realised that all that suffering made me much stronger. I
Fig. 1 Stages and processes of recovery in borderline personality disorder
Ng et al. Borderline Personality Disorder and Emotion Dysregulation (2019) 6:10 Page 4 of 9
have more insight because I had to do the work to recover
(JTR280 R).
Developing greater awareness of emotions and thoughts
The identification of emotions and thoughts was consid-
ered a starting point in fostering understanding of
oneself and the use of coping strategies, such that Iwas
beginning to develop more awareness of my emotions,
but not so much control. Just the ability to not be
blindsided by them(JTR459 NR). However, the iden-
tification of emotions did not preclude individuals to
distress, where I dont necessarily act on my thoughts
anymore. My first reaction to something will be I should
self-harm, but even though Im not actually physically
doing it, having my thoughts consumed by it is distres-
sing(JTR083 NR).
Strengthening sense of self
All individuals acknowledged that developing ones sense
of self was a central component of the recovery journey.
Individuals who identified with being recovered provided
greater details of the nuances of developing a stronger
sense of self. This was conceptualised as a process of re-
framing how one understands or perceives oneself. This
process was noted to commence in conjunction with de-
veloping skills to recognise and tolerate emotions.
Individual narratives discussed the lack of identity
stemming from first experiences of BPD and their sense
of self being constructed upon symptom experience and
identification with the BPD diagnosis. For example;
Sometimes I feel like my whole identity has been based
around my traumaand when you suddenly start being
able to react differently to things, I kind of felt like a lot
of my identity was disappearing, because I no longer feel
as intense(JTR051 NR). Stigma arising from interac-
tions with others had the potential to reinforce negative
self-perceptions, such that I was very reluctant to actu-
ally disclose to people [my diagnosis] up until only really
a few years ago, because I disclosed previously without
thinking about it and then experienced unpleasant
responses.(JTR011 R).
Being aware of individual patterns and triggers pro-
vided opportunities to always challenge myself to become
better. Instead of avoiding things like I used to, I think
about how I can do it until Im not stressed out by it
anymore(JTR233 R). This allowed for skill practice
but also a subsequent sense of agency. Difficulties
moving away from the illness identity was articulated by
a minority of individuals in the recovered group. Despite
progress made in identifying emotions and skill usage,
individuals noted that my therapist had been telling me
that I was recovered and I didnt meet criteria, but I
didnt believe her. I think it was because I lacked an
identity. I still dont understand what identity isI held
onto that diagnosis for such a long time, that was who I
was(JTR239 R). The fear associated with developing
a greater sense of self exacerbated this as what if I use
the skills and do what I need to do to achieve recovery
and I still hate myself?(JTR280 R).
Understanding the perspectives of others
This theme was discussed by a minority of individuals in
the recovered group. Individuals described this as a
process of reflecting beyond ones own subjective experi-
ence to include the capacity of others and the relational
context. The impact of being able to understand the
perspectives of others in reconciling relationships was
highlighted in an individuals response, where I got to
experience the pain that I inflicted on my mother, by
projecting all my self-loathing onto her. My mum had
her own weaknessesbut I was too caught up in my own
narcissistic injuries before to conceptualise how much
pain Id caused her.(JTR191 R). This was similarly
discussed by another individual, where the perspectives
of others allowed for the calibration of her own percep-
tions of self. For example My husband always saw my
potential and knew what Im capable of, but I didnt see
that at the time. I just thought he was ridiculous and
was making fun of me, but I now know what he means
(JTR072 R).
Processes of recovery in borderline personality disorder
Four recovery processes in BPD were identified from
individuals narratives; 1) active engagement in the
recovery process, 2) hope, 3) treatment and, 4) meaning-
ful activities and relationships. These processes could be
overlapping and facilitate or hinder the recovery journey.
Some differences between individuals in the recovered
and not recovered groups were identified. These recov-
ery processes contributed to the movement through the
recovery stages and the growth within individuals.
Active engagement in the recovery process
The desire and willingness to engage in the recovery
process was crucial for progress in recovery to be made.
Yet these observations were often made from a retro-
spective standpoint, when individuals had already
accepted their diagnosis and take responsibility to learn
the skills and do it yourself, youre going to get to a finite
point, where its all going to be ok(JTR011 R). Motiv-
ational differences between individuals in the recovered
and not recovered groups were identified, such that
individuals in the recovered group placed emphasis on
intrinsic factors, whilst individuals in the not recovered
group emphasised extrinsic factors. A minority of
individuals identified that the mindset in which they
approached treatment may impact on willingness to
active engage in recovery such that a change-oriented
Ng et al. Borderline Personality Disorder and Emotion Dysregulation (2019) 6:10 Page 5 of 9
mindset was necessary. I was in treatment but I thought
why I was sitting there listening to other people talk
about their issues. I thought this isnt my problem and I
felt so angry, I didnt see the point, so I dropped out.
(JTR239 R).
Hope
Hope was an overarching concept, permeated when
experiences positively contrasted to individual percep-
tions or their worldview. Recovery was considered unex-
pected and promoted a new outlook which was not
previously considered by some individuals. States of
hopelessness particularly observed during the early
stages was prevalent in all individuals, such that I didnt
have any kind of hope. I didnt have anything to hold
onto…’ (JTR239 R). Hope could be generated through
vocational and relational engagement and the subse-
quent sense of agency gained from the use of skills or
reflection on progress. For some individuals in the not
recovered group, the maintenance of hope was associ-
ated with the ability to get treatment, I had a wonderful
psychologist who I got along really well with. But at the
moment its hard to keep my eye on the prize, per se
(JTR459 - NR).
Hope played a role in the maintenance of motivation,
as it contributed to gains in self-belief and the reduction
of self-doubt. That sense of just knowing the emotions
will end, this isnt a permanent thing... I used to feel like
it was just never going to end(JTR239 R). The shift in
perspective had a compounding effect on individuals
and their clinicians, as ‘…I suppose I wouldnt expect it
(recovery). I mean my clinicians were surprised by my
recovery(JTR151 R).
Engagement with treatment services
Seeking treatment was identified by all individuals as a
key component in the recovery process, where effective
treatment aligned with individual goals provided a sense
of hope and the development of skills. Whilst these
provided individuals a sense that this could be working.
Maybe things will be ok(JTR061 NR), services and
treatments were described as mixed and fragmented. All
individuals described at least one negative experience,
where difficulties accessing treatment hindered progress
on recovery. Individuals described greater difficulties
when at the start of the recovery continuum.
Incongruent relationships through a lack of therapeutic
alliance between clinician and individual also contributed
to a lack of progress made in recovery, such that Idont
think I progressed much with them (clinician) because we
didnt fit well(JTR051 NR). This contrasted to the pro-
gress made with clinicians who promoted collaborative
and trustworthy relationships, as these fostered stronger
relationships, as she would make an appointment with me
and I wouldnt turn up. She didnt get angryshe just kept
trying and waited until I was ready(JTR233 R).
Engaging in meaningful activities and relationships
Engaging in meaningful activities and relationships was
described as providing a sense of belonging and
connectedness, the opportunity to practice new skills,
reflect upon ones emotional reactions and sense of self.
Although individual differences influenced what was
considered meaningful, these commonly included
employment, education, and relationships with friends,
family, significant others and clinicians. Benefits such as
the independence gained from being employed and the
sense of affirmation and sense of purpose(JTR011-R)
was discussed.
For some individuals during the early experiences of
BPD, their experience of symptoms precluded their
participation in activities such that when when I was a
student and before I started working full-time, it was
much harder and my symptoms were more pronounced. I
had a lot more difficulty(JTR011-R). This also extended
into the relational domain, where some individuals
avoided relationships in fear of the negative effects on
symptoms, such that I havent had a relationship for the
last seven months, its easier when you dont have one
Im really scared of actually going into a relationship
again, because when that goes bad, Im going to go bad.
(JTR018 NR).
All individuals acknowledged the role activities and
relationships had for self-exploration and reflection. For
example, meditation was described by one individual as
a laboratory that helps you sit with yourself and watch
how the emotions just rise and fall away(JTR191 R).
Whilst others identified differences in self in differing
contexts, for example At work I would be fine, but I can
be a complete mess outside of work. I can organise 10
other people but then my brain just switches. As soon as
I dont have something to focus on, I focus on myself,
which is bad.(JTR018 NR). Noticing differences in
oneself provided opportunities to gain greater insight
into oneself.
Discussion
The present study aimed to gain a holistic understanding
of recovery in individuals with lived experience of BPD
at either end of the recovery continuum. Overall, recov-
ery was characterised by an interaction between the
stages and processes. The identification of recovery in
BPD as an ongoing journey is reflective of current litera-
ture on personal recovery in mental health [2,15].
The stages of recovery identified in the present study
align with the broad recovery stages mapped by Leamy
and colleagues [4]. However, stages identified were
framed by individuals in a clinical manner. Domains
Ng et al. Borderline Personality Disorder and Emotion Dysregulation (2019) 6:10 Page 6 of 9
associated with improving experience were reflective of
core psychopathology in BPD [16]. This mimics the
tasks identified in other qualitative studies examining
recovery in personality disorder [2,6,7]. Therefore, the
developed framework may be reflective of recovery
within the context of treatment. Individuals in this study
on average had 10 years of treatment, therefore the
importance of treatment as part of recovery is not
without standing. Yet, the literature proposes that there
are multiple routes to recovery, including engagement in
non-traditional mental health services [3], The possibility
of individual recovery through the use of other supports,
such as peer workers or recovery colleges, could be
further investigated within the context of personality
disorder. Despite this, only the perspectives of women
were included as part of the study. The perspectives of
men could be a focus for future research.
As individuals were required to have a diagnosis of
BPD to take part in the study, the being stuck and diag-
nosis stages were universally described. Diagnosis played
a role in shifting the trajectory of experience and provide
opportunity to formulate meaning and promote hope.
However, the gap between an individuals perceived age
of onset and age of diagnosis in this sample was approxi-
mately 15 years. This may be representative of a know-
ledge gap in health professionals and the need to upskill
clinicians in working with people with personality
disorder or stigma which may prevent timely diagnosis
[7,17,18]. This compounds with the desire of individ-
uals for information about BPD at diagnosis.
Differences between the recovered and not recovered
groups were most pronounced in the improving experi-
ence stage. The narratives of individuals in the recovered
group articulated experiences of understanding self and
others, compared to individuals in the not recovered
group who discussed working towards improving aware-
ness of emotions and thoughts. Whilst growth is exem-
plified as a stage in other models of personal recovery,
often involving self-management of symptoms [19],
narratives in this study indicate that the process of
growth began through gaining awareness of emotions.
Strengthening the sense of self was identified to be a
domain central to growth. There are differences between
what is currently conceptualised as identity in the per-
sonal recovery literature, which proposes that individuals
reformulate their sense of self [20,21], suggesting that
individuals have some sense of self, prior to their first
experiences of mental health concerns. In this study,
individuals describe a lack of identity from first experi-
ences of BPD. Adopting an illness identity has been as-
sociated with less favourable outcomes [22], whilst the
movement away from illness identity is supported by the
current personal recovery literature [4]. The emphasis
on diagnosis in the current findings suggests that
acceptance of the illness is required to a degree to pro-
gress in recovery in BPD. Over-identification however,
can also lead to stagnation in recovery. Greater under-
standing of illness identity in BPD is required and is par-
ticularly salient given identity disturbances is core to the
disorder. Identifying internal narratives may be a starting
point in promoting motivation and willingness to engage
in the recovery journey.
Engaging in relationships and meaningful activities is
known to be a priority for individuals with BPD [1].
Interestingly, the proportion of individuals engaged in
paid employment and in a relationship did not signifi-
cantly differ, despite individuals being at either end of
the recovery continuum. This indicates that recovery
status may have an influence on the quality of the rela-
tionship or the amount of work engaged in. Existing lon-
gitudinal studies have identified that approximately 50%
of individuals experience good recoveryfollowing 10
years of follow-up, indicating that individuals have expe-
rienced concurrent remission from BPD and have full
time vocational engagement [23,24]. In the present
study, less than half of the individuals in the recovered
group were engaged in a relationship or in paid work,
indicating that the current sample may have a more
severe presentation and experience greater psychosocial
difficulties compared participants in existing longitudinal
studies. Differences between the treatment context in in-
dividuals in the current sample and longitudinal studies
such as The McLean Study of Adult Development [24]
are worth noting. Individuals in the McLean study were
more functional and therefore likely to be employed
than those in the current sample. This may be due to
differences in capacity to pay for and access care, with
the McLean sample being mainly health insured patients
compared with our sample that were more reliant on
stretched public services for care.
The broad recruitment strategy adopted by the study
allowed for individuals to be recruited from more than
one treatment service or service catchment, allowing for
a wider range of views and experiences to be included
in the study. However, consistent with previous re-
search, the study adopted a retrospective approach.
Difficulties in comparing individuals were encoun-
tered by researchers, as recovery is not a static
process. For example, individuals in the not recov-
ered group may have previously experienced periods
in which they considered themselves as recovered
and could draw on these experiences. The narratives
of individuals may be subjected to some level of re-
sponse bias given the significant gap between indi-
viduals age of onset, diagnosis and current age. The
use of prospective longitudinal research to map re-
covery to obtain real time accounts may be a direc-
tion for future research. The adoption of blind data
Ng et al. Borderline Personality Disorder and Emotion Dysregulation (2019) 6:10 Page 7 of 9
collection and analysis process may also reduce the
likelihood of researcher bias.
Conclusion
This study identified stages and processes associated
with recovery in BPD through the perspectives of
individuals with lived experience. The findings extend
existing knowledge by contrasting the experiences of
individuals at either ends of the recovery continuum.
The inclusion of individuals in the recovered group,
provides a stronger indication of what the full recovery
spectrum may constitute. The findings however, repre-
sents recovery in the context of treatment. Therefore, it
is difficult to extend these findings to individuals who
seek support for BPD outside of traditional treatment
services. To incorporate a more holistic approach to
recovery in clinical practice, it is recommended that a
greater focus on individual motivation, treatment
engagement, relationships and hope is needed.
Additional file
Additional file 1: Interview Schedule. (DOCX 15 kb)
Acknowledgements
The authors would like to acknowledge the individuals with lived experience
who took part in the study.
Funding
FYYN was supported by an Australian Government Research Training
Scholarship. BFSG receives funding from the NSW Ministry of Health for
Project Air Strategy. The funders had no role in the design, recruitment,
collection, interpretation or writing of the manuscript.
Availability of data and materials
Data from the current study will not be made available, as participants did
not consent for their transcripts to be publically released. Extracts of
participant responses have been made available within the manuscript.
Authorscontributions
FYYN designed the study, recruited participants, conducted all interview
participants, conducted the formal data analysis, and wrote the first draft of
the manuscript. MLT contributed to the interpretation of the results. CM was
the secondary coder for qualitative data analysis. MJ contributed to the
interpretation of the results. BFSG contributed to the design of the study
and interpretation of the results. All authors read and approved the final
version of the manuscript.
Ethics approval and consent to participate
This study received ethics approval prior to the start of the study from the
University of Wollongong Social Sciences Human Research Ethics Committee
(HE16/215). All participants were informed of the aims and risks of the study
and provided informed consent.
Consent for publication
Not applicable.
Competing interests
The authors have no competing interests to declare.
PublishersNote
Springer Nature remains neutral with regard to jurisdictional claims in
published maps and institutional affiliations.
Author details
1
School of Health Sciences, Institute of Mental Health, University of
Nottingham, Nottingham, UK.
2
School of Psychology, University of
Wollongong, Wollongong, Australia.
3
Illawarra Health and Medical Research
Institute, University of Wollongong, Wollongong, Australia.
4
Project Air
Strategy Consumer and Carer Advisory Committee, Wollongong, Australia.
Received: 25 February 2019 Accepted: 14 May 2019
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Supplementary resources

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