A narrative exploration of identity in adults with de novo scoliosis

Abstract

Adult de novo scoliosis is a chronic health condition characterised by a curvature in the ageing spine. It can cause debilitating back pain and significant visible differences. Yet there has been very limited research on the psychological effects of this condition, particularly around identity. Therefore, we undertook semi-structured interviews to explore the ways in which individuals with scoliosis understood their identity. Findings from narrative analysis highlight the ways in which individuals negotiate their identity in relation to their social roles, their ability to control their condition and things around them, the extent to which their condition is visible and the extent to which they experienced physical pain from their condition. This article concludes by highlighting the relationship between identity and scoliosis and offers practical implications and suggestions for future research.

Introduction

Adult de novo scoliosis (referred to as scoliosis from this point onwards) is the deformity of a previously straight spine within a skeletally mature patient. It presents due to an accelerated deterioration of the spine in middle age with facet and progressive disc degeneration. The curvature can initially be minimal deeming it an ‘invisible’ condition, however, due to its progressive nature, the curve can become more accentuated and noticeable, transitioning it into a ‘visible’ condition. It is typically diagnosed over the age of 50, can lead to chronic back pain and often results in significant changes to an individual’s lifestyle (National Health Service [NHS], 2017; Scoliosis Association UK, 2018).

Scoliosis is one of the most common conditions in the ageing spine and is set to increase with the ageing population (Kobayashi et al., 2006; NHS England, 2013). Individuals with scoliosis have increased mortality rates, excessive debilitating pain and impaired psychosocial functioning (Lonstein, 2006). These threats to life, mobility and functioning can challenge an individual’s identity, meaning they can struggle to understand and make sense of their world, others and their changing self (Heine et al., 2006).

When conceptualising identity, a symbolic interactionist perspective was adopted. This suggests self-concept is made up of a series of identities that fall into three categories – situational, personal and social. Having multiple identities allows different aspects of self to become more or less salient depending on the circumstances (Hewitt, 2007). This study focuses on personal identity or the ways in which individuals wish to define themselves (however as seen below this is influenced by situational and social identities). Charmaz (1991) described this desired sense of self as a ‘preferred identity’ and is something that individuals hope, aim and plan for. In this study it was conceptualised that participants’ preferred identity was their original, ‘healthy’ identity. However, this can be threatened by chronic illness assaults towards the body and result in the formation of an illness identity (Charmaz, 1991).

Whilst there is currently no literature investigating identity in scoliosis, theoretical and empirical evidence may be drawn from other areas that share some similarities with Scoliosis: visible difference and chronic back difficulties (pain and biological changes). Both of which can have significant impacts on identity (Jørgensen and Roaldsen, 2017).

The visibility of a condition can very much influence ones sense of self, as in keeping with the symbolic interactionist perspective it can determine how one defines, relates or differentiates from others (Hewitt, 1992). Often the presentation of visible difference in many societies is greeted with a negative narrative shaped by stigmatisation and results in psychological distress, reduce self-esteem and limit quality of life for the individual (Rumsey et al., 2003, 2004). Goffman (1963) theorised that the stigma associated with physical difference can present in two different forms. The ‘discredited’ individual who presents with visible signs of being different and can experience explicit judgement/assumptions from others, and the ‘discreditable’ individual who has the difference, but it is not visible and so may not experience as much societal judgement but will have to manage different risks such as the fear of being discovered and the lack of potential support that may present when disclosing. (Chaudoir et al., 2013; Goffman, 1963 ).

As mentioned the visibility of a condition can greatly influence self-identity however the influence of difference on identity for scoliosis patients remains unclear as the experience of increasing visible difference (something associated with Scoliosis) has yet to be explored.

Chronic back difficulties are usually accompanied with a lot of pain which can threaten an individual’s preferred sense of self (Smith and Osborn, 2007). Patients have reported ‘detaching’ from the painful parts of their body and described them as ‘not me’ in an effort to preserve preferred identities and reject the ‘sick role’ (Osborn and Smith, 2006). This desire to separate self from pain is likely to have been influenced by society which labels ‘illness’ with negative connotations such as ‘normal’ and ‘good life’ (Turner, 2000).

Biological changes to the spine can contribute to significant back difficulties and have been understood to shape individuals’ identity with findings from spinal injury patients highlighting a loss from their former self-identity (Hammell, 2007). However, Yoshida (1993) suggested that the process which spinal patients go through regarding their change in self-identity is pendular in that they can swing back and forth from their former self and their newly acquired ‘disabled’ self which may be due to the speed at which they experience change and is different to scoliosis patient who experience a slow degeneration of their spine. Findings from those who are living with degenerative diseases (osteoporosis) discovered that if they can take a more understanding stance of their condition they are more capable of ‘dancing’ with their condition rather than battle it and consequently experience less distress (Hovey and Craig, 2012). However Scoliosis is not directly analogous to osteoporosis and, therefore, assuming the scoliosis journey is entirely the same as osteoporosis would be too reductionist. For example, osteoporosis reduces the strength of all the bones in the body, not just the spine, which increases the likelihood of fractures and bone breaks. Therefore, although the osteoporosis literature provides some insight into the potential effects of a degenerative condition, and how this could impact on identity, it cannot be fully extrapolated to scoliosis.

Whilst there is useful literature outside of scoliosis that provides some insight into the potential influences of this condition on identity and wellbeing, little is known about the specific psychosocial experiences of individuals living with scoliosis. Particularly in relation to the degenerative, painful and visible aspects of their condition and how this influences their identity. It is in this context that this article makes an original contribution to the literature by exploring identity in adults with scoliosis from a narrative perspective.

Methods

Design

A qualitative methodology was adopted for this study as it allows rich, in-depth idiographic data to be gathered from participants to explore not only what is happening but how this is understood and perceived by those with lived experience (Alasuutari, 2010). This was particularly relevant for this topic given there is very little participant-led exploratory research in the field of scoliosis.

A narrative approach was implemented as this can provide insight into the process of identity construction by participants (Riessman, 2008), the aim of this study. Narrative research requires participants to recount narratives about who they are and what they have been through to capture the chain of experiences that make up a larger phenomenon from their perspective (Creswell, 2007; Stephens and Breheny, 2013).

It is particularly applicable when individuals face a disruption to their understanding of self, for example, due to chronic illness as this is when narratives naturally become more pronounced and so has become a popular method in health research (Riessman, 2003). As individuals attempt to make meaning from their lived experiences by organising everyday interpretations into story format so they can reinstate a sense of order (Stephens and Breheny, 2013).

Given there is no set method to follow within qualitative research it means there are many different ways to think about the same data (Patton, 2002). Therefore, the findings presented below are from just one of many different ways in which the data could be understood with other approaches likely creating alternative meanings (Earthy and Cronin, 2008).

Ethics

The study received a favourable ethical opinion by NHS HRA.

Participants

Narrative research ordinarily involves small samples including single case studies as the focus is to construct rich detailed narratives within context (Esin, 2011) therefore no minimum number of participants was set. Between one and five individuals was considered an ideal range of participants as previous narrative studies have included this range of participants (Earthy and Cronin, 2008; Keats, 2009).

To help ensure appropriate participants were recruited an inclusion and exclusion criteria was designed. Participants were included if: they had a formal diagnosis of adult de novo scoliosis (also known as degenerative scoliosis), were over the age of 50, had no cognitive impairments and had capacity to provide informed consent.

Participants were recruited through a UK hospital using purposive sampling techniques as the study required a sample with specific attributes, including age, cognitive ability and diagnosis. Fifteen potential participants were given the participant information sheet with six individuals contacting the lead researcher. Two of these individuals decided to withdraw at this stage, the remaining four met the inclusion criteria and consented to participate. Of these four, three were female and one male, with their age ranging from 53 to 77.

Data collection

Data was collected through one-to-one semi-structured interviews aimed at eliciting participants stories (Hollway and Jefferson, 2000). The process was designed to be organic and ideally uninterrupted by the interviewer to allow participants to tell their story without any external influence (Jovchelovitch and Bauer, 2000). The interview followed the format proposed by Jovchelovitch and Bauer (2000) based on Schütze (1983a) biographical narrative interview. This began with an open-ended question (‘Tell me about your experience of having adult de novo scoliosis’), to increase the likelihood of narrativization (Riessman, 1993). Once participants came to a natural ending, the researcher framed questions around the topics previously mentioned by the interviewee and matched relevant literature. This was done using the same language used by the participant (Jovchelovitch and Bauer, 2000) with the aim of to enriching the interviews so detailed accounts were produced (Willig, 2008). No specific interview duration was set to allow participants to express their narratives in full, on average interviews lasted 50 minutes. Due to time constraints no second or third interviews could not be conducted.

Data analysis

Data was subjected to narrative analysis as defined by Jovchelovitch and Bauer (2000) based on the systemised Schütze (1977, 1983a, 1983b) approach. This form of analysis was chosen as it complements the narrative interviewing techniques used in this study which, as mentioned, is also based on Jovchelovitch and Bauer (2000) work. This technique has been used in other research investigating identity development (Ben et al., 2015; Szczepanik and Siebert, 2016; Fernandes et al., 2017).

Jovchelovitch and Bauer (2000) propose six steps for analysing narratives based on Schütze (1977, 1983a, 1983b) work. Firstly, a detailed and high-quality transcription of the verbal material is produced (step one). From this, the data is separated into indexical (a concrete reference to ‘who did what, when, where and why’) and non-indexical material (statements that express values, judgements and any other form of generalised ‘life wisdom’) (step two). This allows for all the indexical information to be ordered into a timeline or ‘trajectory’ (step three), and the non-indexical data is used to form theories in relation to the narratives which represent the self-understanding of the informant’s identity (and any changes that have arisen) by including usual and unusual reflections/opinions, concepts (step four). Comparisons are then made across the participants’ trajectories (step five) so similarities are established (step six).

What follows will be a presentation of the findings. A discussion of the existing literature will be incorperated to help increase the credibility and relevance of findings by orientating the interpretation of the data within the wider context for the reader (Anderson, 2010; Braun and Clarke, 2013; Smith, 2003).

Findings

Interpretations of participants’ accounts suggest a temporary salience and complex interactions between the preferred ‘healthy identities’ and less desirable ‘illness identities’. It was understood that these different identities could become more or less dominant depending on how they experienced, managed, interpreted and related to their scoliosis. What follows is four similarities (Social roles, Control, Visible Difference and Pain) that emerged from participants accounts about their scoliosis.

Changing social ROLES

All the female participants in this study spoke about their identity as a mother influencing how they related to their scoliosis. Being a parent brings a sense of responsibility to provide care to loved ones; consequently, participants’ own needs may be sacrificed. As the following participant comments:

‘And because Jesse has so many issues, you know she is my priority [. . .] if I have to suffer myself a bit just to make sure that she’s more comfortable than that’s what I do’. (Jill)

In the above, Jill draws on a narrative that presents her implicit parental identity through her need to prioritise her daughter’s wellbeing. She contrasts Jesse’s ‘many issues’ with her own ‘bit’ of suffering. This might be understood as an attempt to minimise the significance of her scoliosis and to present a preferred version of herself that is well or at least able to care for her daughter (Williams and Koocher, 1998). This may serve the function of providing Jill with psychological distance from her scoliosis in a similar light to the ways in which parents caring for a child with cancer often place their own physical health as secondary (Klassen et al., 2008). However, this interplay between being a parent and being unwell is difficult to manage due to the impact of scoliosis. For example, later on in her account when discussing her caring role Jill explains:

‘I wanted to be a good mum, and I don’t know, for whatever reason, you know all of these reasons, I have been good enough [Jill begins to cry]’ (Jill)

In this part of her account, Jill described wanting to be a good mother but was questioning if she has successfully achieved this and seemingly comes to a position of being ‘good enough’ but becomes visibly distressed. This excerpt can be understood as Jill accepting the reality that her illness has an impact (increasing the salience of her illness identity) whilst continuing to consider it a hindrance to achieving other important social roles, reflecting the complexities in identity formation and change. Similar accounts have been found in HIV-positive mothers whom attempted to minimise the impact of their condition in the hope they could continue caring for their children but were faced with regular threats (due to their illness) that meant they could no longer provide the same level of support which was distressing (Wilson, 2007).

Pam also refers to the worry she has for her children (who are adult children – meaning the care Pam provides is not as direct).

‘I worry about certain aspects, my children’s lives although they’re doing, you know, they’ve got great lives. But you know, you worry about their futures as well it’s all this stuff’ (Pam)

Interestingly Pam describes worrying about her children’s futures rather than speaking explicitly about her own future. Again, like Jill this could be understood as Pam gaining some psychological distance from her scoliosis by focusing on her children as this protects her preferred healthy identity by enabling her role as a mother to remain salient.

Sophie also has older children, nevertheless, it has been interpreted that she prioritised the wellbeing of her two children above her own life, with her disclosing the function of a suicide attempt was to eliminate any burden on her children whilst ensuring they were financially supported.

‘I took a load of tablets [. . .] my theory was if it wasn’t, it wasn’t going to get better and therefore that the family would be better with my money to deal with the other problems and not with me’. (Sophie)

This has been understood as Sophie expressing her distress about her children caring for her – as it would require her sacrificing the role of caring mother. So instead, she chooses to forgo her own needs to ensure her children are cared for. Sophie’s rational for her suicide attempt is not uncommon, previous research has found ‘feeling like a burden’ to others is a strong theme in suicide notes (Foster, 2003).

Holding the role of a ‘professional’ was an influential social role within participants preferred healthy identities and contributed to how participants related to their scoliosis.

Similar to Sophie’s pragmatic approach to providing care for her children (by attempting to take her own life) she spoke practically about her role as a professional providing care in emotionally charged, life-threatening circumstances.

‘I would have to deal whatever problem was on the other end of phone and so I made the decision and gave the advice or call the ambulance. um and in 20 years, nobody died’ (Sophie)

In this extract, Sophie is constructing an image of a person with a long career of being responsible for making urgent life-saving decisions. This could be understood as an attempt to retain, at least in the interview, a self-concept of power and agency. People within the medical profession are often positioned in this way within society due to their extensive training, knowledge and level of responsibility (Furst and Furst, 1998). Bringing this into her narrative suggests this is an identity that Sophie still associates with and maybe a way she retains an aspect of wellness in her identity. Carrying forward these familiar aspects of professional self has been evidenced to protect valued social identities and therefore maintain a preferred, healthier sense of self (Reynolds, 2003). Having held a position that is imbued with power and agency, adopting the sick role maybe something very challenging for Sophie. It is not uncommon for health care professionals to struggle when it comes to adjusting to an illness identity as it involves handing responsibility of their care over to another which does not align with their original powerful position (Jayne and Wilson, 2003).

This struggle comes to the fore later on in the interview with Sophie when she indicates a sense of being defeated despite her best efforts:

‘I have worked long enough in the NHS [. . .] on all sorts of different counts to know how you have to keep going and keep plugging away and I did all that and I still couldn’t get it to work for me’. (Sophie)

Here, Sophie communicated the ways in which the power she previously valued is challenged possible due to the shift in her position from professional to patient. The account highlights that even with her professional status she cannot achieve what she needs due to the powerless and submissive construction of the patient (Jayne and Wilson, 2003).

Interestingly Jill talks about how she has protected her professional role through being a mother.

‘An because I don’t work that’s, you know, when I was working, I did work really hard and you know [. . .] Um and, you know, now I’m a mum, and that’s my job. I want. I want to be the best mum I can’ (Jill).

Here, it is understood that Jill has transferred her professional identity from her previous employment (which she has to quit due to her scoliosis) onto her mothering role. She describes motherhood as her ‘job’, suggesting for Jill the two roles are very much interwoven. This could act as a form of protection from the losses she could have experienced from her professional identity becoming less salient (responsibility, problem solving, caring for others, sense of achievement). Although protective it may amplify her distress when she perceives herself as not ‘the best’ mother – as it is a loss of two social roles – mother and professional.

This conflict between participants wanting to maintain key aspects of their preferred social roles (which helps and requires them to uphold a healthy identity) against increasing evidence to suggest they are ill (forcing an illness identity to the foreground) has been interpreted as a fluctuating narrative where holding a healthy sense of self and an ill sense of self varies depending on circumstances.

The need for control

A debilitating chronic condition can result in a lost sense of control which can increase patient’s psychological distress (Harvey and Miller, 2000). A common defence mechanism proposed by psychoanalytic theory that chronically ill patients often adopt to manage this threatening external reality is denial (Salander and Windahl, 1999). To achieve denial, the impact of scoliosis has to be attributed to something else. For Pam, this may be age.

‘It’s difficult to distinguish between, you know, the reasons for that whether that is because I just looked like a slightly hunched old lady or just because I am quite an old lady do you know what I mean?’ (Pam)

This potential use of control in the form of denial appears to be generally effective at managing and maintaining Pam’s healthy identity as she has been able to associate any changes she experiences as part of normal ageing. However, there are glimmers of this denial being less effective when Pam states ‘Well I know it isn’t specifically age’. This could be interpreted as her briefly adopting a position of acceptance in relation to her illness. However, this may be too painful for Pam to maintain as it requires her to relinquish control and confront her external reality that her scoliosis is (negatively) impacting her so she likely reverts to holding a position of denial (Salander and Windahl, 1999).

Consequently, it could be understood that Pam may be experiencing a fluctuation in the perceived control she has over her scoliosis which is potentially influencing the salience of her different identities (healthy or ill). It is suggested that if Pam can successfully maintain a sense of control over her condition, using denial, she may be able to continue considering it manageable and her preferred (healthy) identity likely remains dominant. However, when she relinquishes this illusion of control and is more acknowledging and accepting of the impact of the condition, her illness identity potentially becomes more profound (Salander and Windahl, 1999).

Denial was also a significant part of Jake’s narrative. During the interview, it was interpreted he was communicating that his sense of safety was threatened due to his limited mobility (caused by his scoliosis) but is something he is motivated to regain.

‘If I could get the legs right, I’ll be all right, I’ll be able to run. And if I can out run someone who is chasing me or someone who came at me with a knife’. (Jake)

This is potentially because having the ability to keep oneself physically safe can create a perceived sense of control (Vlaeyen, 2015). Therefore, this statement by Jake could be understood as his desire for safety as it may allow him a sense of control which can facilitate a healthier sense of self. However, as this is unlikely given the permanency of his condition, Jake, similar to Pam, potentially uses denial to still achieve some sense of control by rejecting his external reality, to maintain his preferred healthy identity (Salander and Windahl, 1999). It has been interpreted that Jake might do this by dissociating from his condition as seen when he describes having ‘never heard of’ scoliosis. This potentially flexible use of control is likely causing Jake’s understanding of his scoliosis to vary and creates a fluid self-identity. For example, in conversation with Jake he refers to ‘before’ when he was ‘fit’ (illness identity more salient) but then returns to denying it and stating his age ‘that’s the problem’ (healthy identity more prominent).

For Jill, her feelings of a lack of control over the physical impacts of scoliosis manifested in the expression of excessive control over other areas of her life. As she comments:

‘I think I’ve got OCD on stuff in the house because they’re the things that I can control. And someone said once to me. You worry about what level the blinds are in the house because you can control that. Whereas you can’t control the other things that are happening’ (Jill)

This extract could be read as Jill communicating how out of control she feels with her Scoliosis. This experience has been interpreted as distressing for Jill so she tries to regain a sense of control elsewhere in her life (house work). However, her attempts to feel in control have become so extreme she describes them as pathological (obsessive compulsive disorder) which suggests just how far out of control her Scoliosis makes her feel.

In a similar light, Pam stated she hasn’t ‘let it affect me very much’ which could be understood as her communicating the control she believes she has over her scoliosis. However, this perceived ability to manage and determine her scoliosis trajectory is fragile and later in the interview she reflects ‘it has affected me more than I had realised’ highlighting Pam’s awareness that her scoliosis has impacted her in ways she cannot control.

Increasing visible difference

It was understood that participants potentially considered their differences caused by scoliosis as undesirable and so engaged in compensatory behaviours. These have been interpreted as possible attempts to reduce the visibility of their differences to help ensure their preferred healthy sense of self remains salient through portraying a healthy image of self to others. If these were unsuccessful, and the difference became visible, this potentially was distressing for participants as not only did this change their individual identity constructions but also how others perceived them. For example, as Jill comments:

‘I don’t stand how I should or I do stand to compensate, so I stand incorrectly’ (Jill)

This quote from Jill can be understood as her desire to conceal her differences. This may have derived from Jill’s social context where those with visible differences are likely considered discredited members of society and are disregarded based on their appearance (Goffman, 1963). Therefore, Jill is possibly choosing to continue to portray a healthy self-image and remain an active member of society by concealing her visible difference. Jake, goes further and compares himself to others of a similar age.

‘They’ve actually said to me you don’t look your age um and when I see other people my age. I mean they really are they look old. They’re worse off than me walking they’ve shrunk a lot as well’. (Jake)

This can be understood as Jake potentially minimising his difference by comparing himself to others who he perceives as ‘worse off’ than him. This would suggest that although Jake may have some visible differences (and an increasing illness identity) he manages these by identifying others with greater visible difference and noting how much younger, more mobile, and taller he is, all of which are facilitating a healthier identity as they are all likely to be desirable characteristics in Jake’s social context.

However, this potentially makes it threatening for Jill and other participants when their differences become more visible (due to the degenerative nature of scoliosis) to others.

‘Um and people are noticing it now you know, you’re walking with a limp, you know I say it was probably my scoliosis. [. . .] it’s not ideal’ (Jill)

Through reference to her social disclosure of having scoliosis as being ‘not ideal’ the tension between Jill’s physical condition and her sense of identity is apparent as she has to socially acknowledge her illness identity to others opening herself up to the possible shame and stigma associated with it (Goffman, 1963). This tension is similar for individuals with hand injuries who experience significant distress about social rejection due to a physical difference that is hard to conceal (Thompson and Kent, 2001). However, the visibility (or lack thereof) of difference also raised other challenges including interactions with health care professionals. For example, Sophie describes how her ‘healthy’ appearance was problematic when it came to receiving treatment:

‘The immediate problem is as I have walked in, I’m upright. I’m dressed. I’ve done my hair and therefore I’m okay. So nobody is looking at me and immediately thinking this woman has got a problem’ (Sophie)

Sophie is communicating the difficulties she experienced when trying to evidence her scoliosis to others without any visible difference. This lack of legitimisation from professionals can act as a barrier to accepting the sick role for patients and increase mental distress (Glenton, 2003). Therefore, when Sophie did have scans that evidenced her scoliosis it was a relief for her as it confirmed she was not malingering or a hypochondriac, common concerns for those with invisible conditions (Glenton, 2003).

Overall, participants appear to perceive their visible differences as socially undesirable and so they may be choosing to engage in compensatory behaviours to conceal them. This allows them to distance themselves from their condition and remain focused on a healthier sense of self. However, as their differences become more prominent and less able to be concealed participants are occasionally faced with acknowledging their scoliosis (to themselves and others) which likely forces them to attend to the augmenting salience of their illness identity. However, to add further complexity to the identity struggles, in some circumstances lack of visible difference was problematic as it resulted in a perceived lack of acknowledgement by professionals.

The continuum of pain

Throughout our Participants’ accounts, pain was a central concept that fluctuated in terms of experiences and consequently their identity. For example, where they expressed the ability to manage their pain or reported not experiencing pain, they could understand their identity outside of scoliosis (healthier identity). However, when this pain became overwhelming their identity as someone with scoliosis was prominent (illness identity). As Sophie highlights:

‘you find out all the ways to do these things and to manage so that it’s not I’m not throwing it in people’s face that I am suffering from pain’. (Sophie)

It appears that independent pain management was important to Sophie as it served as a function to not only help her conceal her difficulties from others but also potentially facilitate a sense of control (Karos et al., 2018), both of which, contribute to a preferred ‘healthy’ sense of self (Larsson and Wijk, 2007). However, as part of the same interview, Sophie also communicated an alternative narrative about pain, one in which it was unmanageable.

‘how you manage the pain. I was an expert about that I just felt I had too much pain to manage, that was really my line’ (Sophie)

Whilst Sophie previously associated with her ‘expert’ position in pain management, the degenerative nature of scoliosis brought ‘too much pain to manage’ and crossed a ‘line’. Thus, she experienced a loss of autonomy and control around her wellbeing due to the scoliosis, forcing her illness identity to become more salient. The correlation between Sophie’s illness identity and pain reflects the work by Pincus and Morley’s (2001) who suggested that when pain escalates so does the perception of illness which affects sense of self.

For those in the earlier stages of the condition when pain may be more minimal/non-existent it was interpreted that participants were more able to dissociate from it and gain psychological distance from their scoliosis and illness identity. As Jake comments:

‘Obviously it’s not going to get better. [..] Um if it was a pain where you could take painkillers or something but it’s not. The legs are just not working like they used to. And it’s not painful. Not painful at all’. (Jake)

At the beginning of this statement Jake confirms he is in pain (to such a degree he would consider medical intervention – painkillers) and acknowledges a permanent decline in his health. This acknowledgement could indicate his illness identity becoming more salient (Pincus and Morley, 2001). However, in the second part of this quote Jake quickly changes his perspective (when he uses the word ‘just’) to potentially minimise the impact of the pain. This could be his use of denial, as discussed above, to return to preferred healthier sense of self. Research shows how effective denying pain can be when rejecting an illness identity, as pain signals to the body it is under threat. So, without it, it is more difficult for individuals to identify as unwell (Pincus and Morley, 2001).

Discussion

This study has explored the narratives that participants have created about their scoliosis and how these individuals negotiate their identity in relation to their condition.

Our analysis highlighted the ways in which individuals negotiate their identity in relation to their social roles, their ability to control their condition and things around them, the extent to which their condition was made visible and how they experienced physical pain. Findings from this study align with previous health research that found chronic, visible, deteriorating conditions can lead to the reframing of social roles, psychological and behavioural changes (the need for perceived control, concealment, denial and pain management) all of which can influence the salience of different identities an individual may hold (Wilson, 2007; Irvine et al., 2009).

It also evidences the importance of narrative research as a method of exploring human experience. Particularly Earthy and Cronin’s (2008) data which argues contingent narratives (narratives to make sense of a health condition), and moral narratives (those that acknowledge a changed self) are often combined within participants accounts of illness. Drawing on this existing research the present article offers expansion on previous knowledge but also an original contribution to the research base by examining the personal narratives of individuals with scoliosis, something previously unexplored.

Clinical implications

Findings based on participants’ narratives are important to acknowledge and take forward into clinical practice as it helps ensure the patient’s ‘voice’ is meaningfully heard, something that has yet to be done in the field of scoliosis (Gaille, 2019). Interpretation of narratives indicated several threats to participants’ identity. These threats were understood to be escalating participants’ psychological distress. For example, Jill experienced difficulties with control that she likened to OCD and Sophie expressed challenges with power and not successfully getting her needs met. One approach that has a strong evidence base for improving suffering in physical health conditions is Acceptance and Commitment Therapy (ACT) (Feros et al., 2013). Based on this papers findings, ACT could also be considered an appropriate therapeutic approach for scoliosis due to its theoretical underpinnings of distress (not living in line with values, cognitive fusion, experiential avoidance) matching several of the distressing themes highlighted in this study (Harris, 2019). For example, supporting participants to identify the core values that under-lie their social roles then explore alternative ways of achieving these values could help alleviate the distress associated with the loss/decline of their current responsibilities/roles (Robb, 2007). Cognitive diffusion could help participants gain psychological space from the distressing beliefs, thoughts and meaning they have attributed to their visible differences (Assaz et al., 2018). Radical acceptance could help patients manage their uncontrollable pain and perceived loss of control through the ‘control struggle’ to create space for actions, decisions, behaviours that are achievable (Harris, 2019).

This would increase patient’s psychological flexibility (improved ability to adapt to situational demands, shift mindsets/behaviours when strategies compromise functioning and maintain balance across different life domains) which could allow patients to ‘dance’ with their condition rather than battle it (Hovey and Craig, 2012). Therefore reducing the additional suffering attached to resistance and rigidity to health/illness (and associated identities).

Incorporation of strategies from narrative therapy could be of benefit if it is felt participants struggle with their sense of self as this work is designed to help cultivate a feeling of personal identity. This would be of particular benefit to individuals who have experienced trauma in relation to their scoliosis (McAdams and Janis, 2004). Whilst compassion focused therapy can be an effective approach for those who are managing distress associated with shame that has potentially arisen due to changes in appearance and/or ability to meet social obligations (Gilbert, 2011).

Strengths and limitations

The impact and importance of this study is evident by the limited identity research around scoliosis. This study has attempted to address this gap in literature from the perspective of those with lived experience. Although findings may not have such a broad socio-cultural impact it has still provided important insights into the challenges faced by scoliosis patients. This has created recommendations for clinical practice which otherwise could have been overlooked. It is also reflective of previous research addressing identity and chronic illness which aims for ‘vertical generalisation’ (Hovey and Craig, 2012; Johnson, 1997).

This study was limited in terms of its gender representation with only one male participant which is not a reflection of the gender balance in scoliosis prevalence (Silva and Lenke, 2010). However, this could be partly due to males often not accessing services (White, 2001) and more generally a reflection of the constructions of being a ‘man’ in contemporary society (Courtenay, 2000).

Using the symbolic interactionist perspective to conceptualise identity was beneficial as it incorporates aspects of social influence and fluctuating identities depending on situation/experience. However, it must be considered that this framework was developed by Mead and Cooper, two white American males and so could be limited when applying this approach to individuals from other cultures, race, gender.

Although beneficial to conceptualise stigma using Goffman’s model, this is based on society 80 years ago. In this time the understanding and acceptance of difference has significantly changed due to advancements in education, connectivity (through mediums such as the internet) and increased advocacy for the voice of the service user. Therefore it may not be representative of a modern culture.

Finally, it must also be acknowledged that the interpretation and presentation of the data in this article is only one of many possible interpretations that could be made (Riessman, 1993).

Future research

This exploratory study has helped address an important gap in the literature by providing an initial understanding of identity for those living with scoliosis. It has also highlighted areas that would benefit from further research for example exploring gender differences in scoliosis including accessing of treatment to understand if there are discrepancies in who is accessing scoliosis care. Work to understand how accounts of scoliosis evolve as the condition advances could be very insightful. This could help provide recommendations for those with more significant differences/physical limitations. Ideally these could be through co-design research where service users have a meaningful role within the research design process for example involve patients with finalising interview questions.