Traumatic brain injuries (TBI) occur through an external force to the head that alters brain function or changes brain pathology (Pavlovic et al. 2019). The leading causes for TBI are falls, pedestrian and traffic accidents, sporting injuries, military conflict, interpersonal violence and alcohol and other drug-related injuries (Maas et al. 2022). The total global cases of TBI are not fully known, but it is estimated that 69 million people sustain a TBI each year (Dewan et al. 2018). TBI survivors may experience long-term symptoms including persistent difficulties with attention, sleep, mood instability, fatigue, migraine and chronic pain, which can develop immediately or years after their injury (Pavlovic et al. 2019; Stocchetti and Zanier 2016). These symptoms may impact an individual’s sense of self and their ability to socialise and attend events, visit friends and family, connect with their community and capacity to work (Alston, Jones and Curtin 2012; Howlett, Nelson and Stein 2022; Stocchetti and Zanier 2016).
Drawing on data from semi-structured interviews and diaries, this article explores how 30 people living with TBI experience pressure to meet the social expectations of others, which can be difficult (or unachievable) without emotional work (Goodley 2014; Hochschild 1983; Reeve 2019). Using Hochschild’s (1983) emotional management framework and building on Goffman’s (1959) dramaturgical approach, we examine how participants may experience pressure to ‘perform’ and adhere to ‘feeling rules’ to maintain their old and new relationships. We demonstrate how this can significantly impact people living with TBI, as emotional regulation can be difficult due to their injury. We highlight how ‘feeling rules’ align with ableist expectations about how individuals should ‘look’ and ‘behave’. Our findings indicate that providing opportunities for people with TBI to express their emotionality in their relationships without judgement, enables them to feel valued and supported after injury and to resist ableist norms of social engagement.
Background: Traumatic Brain Injury, Emotions and Disability
TBI may cause temporary, long-term and fluctuating changes to an individual’s physical, emotional and mental health and wellbeing (Stocchetti and Zanier 2016). Many people with TBI do not show any external ‘evidence’ of their injury (especially those without physical changes), which makes the TBI ‘invisible’ to others (Chamberlain 2006, 407). For people living with invisible disabilities, ‘the quality of their lives may be no less profoundly or adversely impacted […] than is the quality of life of those whose disabilities are more obvious’, with all people with disabilities having to engage in a society that privileges non-disability (Davis 2005, 154). In addition, ‘invisibility’ does not lessen the severity or seriousness of the chronicity and personal impacts of TBI symptoms, including the pressure to meet social norms and expectations.
Maintaining the same rules of behaviour and lifestyle of their life prior to TBI, and to align with non-disabled social expectations, is no simple task. Yet, many people with TBI do so with great perseverance. Emotional changes after TBI can include moodiness, increased irritability, lability, dysregulation (McDonald and Genova 2021) disinhibition and emotional reactivity, which can make managing emotions extremely challenging (Salas et al. 2016). People with TBI may also have difficulty in assessing the tone of voice, bodily movement and facial expressions of other people (Murphy et al. 2022). This means their ability to identify emotions and to respond to social situations ‘correctly’, according to social norms, can be complicated. Not adhering to normative social demands may contribute to social stigma (Goffman 1959) and the exclusion that some people with TBI are known to experience (Alston, Jones and Curtin 2012). Qualitative studies on people with TBIs have examined identity after TBI (Chamberlain 2006; Harvey 2017), friendships (Salas et al. 2016) or gendered perspectives (Alston, Jones and Curtin 2012). There are also studies that include people with TBI as one ‘type’ of lived experience across a broader sample of people with disabilities (Kattari, Olzman and Hanna 2018), rather than as a distinctive sample.
Our article shares similarities to affect studies and the concept of ‘melancholia’ (social constraints which limit emotional freedom of disabled people that can reinforce internalised ableism – see Watermeyer 2017), which is well established in disability studies (see Goodley et al. 2018). We contribute to such understandings by using the concept of emotional management to demonstrate the emotional work that people with TBIs engage with after TBI; the significant efforts they invest in regulating, monitoring and adapting their emotions across personal and social contexts. This allows us to appreciate the diversity of ways that emotions are managed and felt by people with TBIs that can include, but cannot be reduced to, ableism. In doing so, we explore how people with TBI navigate their TBI symptoms in nuanced social experiences and interactions after TBI, which remains inadequately explored.
Emotional management
Emotional management offers a way to explore how emotions are shaped to meet interactional expectations in different social contexts (Hochschild 1979), and which impact every aspect of life (work, family life and friendships). This perspective pairs social norms and emotional expression as a learnt process of socialisation (as opposed to emotions being ‘natural’) that influences what kinds of feelings can be expressed, experienced and interpreted (Theodosius 2006). One element of emotion management are feeling rules, which instil a sense of emotional obligation in an individual (‘I should feel or express this’), with the individual then ‘acting’ to present these emotions in any given social situation or context (Goffman 1959). In essence, feeling rules guide people on how to feel, when and where to feel, for how long and how intense these emotions ‘should be’ (Hochschild 1983). These feeling rules include what emotion is ‘right’ or ‘wrong’ to experience or ‘exchange’ with others (such as expressing worry, guilt, sadness, shame or joy). However, emotions are far from this simple; they vary between social contexts, has and carry distinct obligations that demand different types of feeling rules (to be discussed later). These feeling rules are enacted through actions that can be conceptualised as surface acting and deep acting.
‘Surface acting’ involves an illusion of feeling through an imitation of the required emotional display relevant to the social context. In the service industry, Hochschild (1983) notes that emotional displays are an expected and required facet of the job. This might be evidenced by an employee’s curated smile and comforting gestures that, in the case of surface acting, are externalised but are not felt internally – the individual does not feel the happiness behind the smile. What matters is that the audience (staff or customers) believes the performance. Therefore, when surface acting, an individual presents an idealised version of themselves to others, but it does not require innate emotional investment (Goffman 1959) and may involve disguising how they really feel.
In contrast to surface acting is ‘deep acting’, where an individual shapes their emotions to feel and ‘fit’ the social situation (Hochschild 1979). That is, while surface acting is the external presentation of emotion, deep acting includes emotional immersion, investment and energy to ‘feel’ the externalised emotions. As Hochschild (1979) explains, deep acting externally projects what an individual feels (what is internally felt and externally expressed are the same), which contrasts to surface acting that involves an expression of the desired emotion(s) only.
While the concepts of surface acting and deep acting are typically applied to examining feeling rules in paid work (e.g., Hochschild 1983; Hochschild 1979; Wingfield 2010), here we apply them to understand how people with TBI navigate emotion management in everyday interactions that are not confined to the workplace, which can help deepen our understandings of ableism in practice.
Feeling rules and Ableism
While Hochschild is not specific on who wields power in the social performance and display of emotions, they suggest that feeling rules reflect and benefit the socio-cultural dominant order; those with privilege and authority (Hochschild 1983). As feelings rules dictate what emotions are normative within different social contexts, they can potentially reinforce stigma, marginalisation and inequality (Goffman 1959), and perpetuate ableism.
Ableism is the unjust ‘differential treatment of disabled people relative to non-disabled people’, which emerges from non-disabled body-minds being privileged over disabled body-minds (Campbell and Stramondo 2023, 60). Ableism assigns a ‘trajectory of perfection’ that defines what a ‘healthy’ body-mind is, what emotions are ‘normal’ to express, or how to correctly ‘behave’ (Campbell 2013; Campbell 2009). Ableist beliefs are extremely harmful, and have historically informed law, governance and policy that, in turn, have actively excluded, stigmatised, disempowered and misunderstood the lived experiences of disability (Campbell 2013; Campbell 2009; Goodley, Liddiard and Runswick-Cole 2018). Feeling rules are part of social norms that sustain ableist trajectories that erase (or reduce the value of) human difference (Campbell 2013). That is, feeling rules can result in disabled people experiencing social enforcement of ‘appropriate’ ways to think, feel and behave, with non-compliance resulting in potential social marginalisation and discrimination (Goffman 1963; Goodley 2014). Feeling rules thus can pose multiple challenges for people with TBI including maintaining employment, relationships and social support.
Data and Methods
Our broader study explored the everyday lives of 44 Australians affected by TBI. This included diaries and/or semi-structured interviews with people who have sustained a TBI (n = 30), and semi-structured interviews with family members and carers (n = 14). For the purposes of this article, we draw upon the data from 30 people living with TBI. This includes interview data from 29 people and diary data from 5 people (with four of these people also consenting to an interview). Amongst this cohort of 30 participants are 1 non-binary person, 10 men and 19 women, who are aged between 21 and 69 and reside across 6 states in Australia, with an average of 16.5 years since their initial/first injury.
To recruit participants, we distributed the project information sheet and consent forms to brain injury associations, community and sporting organisations and via social media. Once we received a potential participant’s written or verbal consent, we organised a pre-screening meeting. The pre-screening process allowed the participants to seek clarification about the project, and for the researchers to assess any possible presence of ongoing trauma related to their TBI using a Trauma Screening Questionnaire (TSQ). The TSQ is designed to be used by researchers outside of psychiatry to mitigate potential or avoid further exacerbating existing trauma responses (Brewin et al. 2002). Participants were asked a series of yes/no questions and if participants scored highly on the TSQ (i.e., 6 or more on a 10-point scale), they were unable to be involved in the project. Only one person was unable to participate based on their TSQ score and were reminded of the counselling and support services that they could access.
Semi-structured interviews allowed the authors to explore topics of interest to us, while being flexible to the participant’s responses (Gray 2018). Participants could share any issues related to living with TBI that they wanted to share which were not covered by the interview questions. This method gave participants some level of autonomy, including raising topics or issues related to their TBI that may have been missed otherwise.
Throughout the interviews, participant sensory needs and sensitivities were considered, such as repeating questions or rephrasing them to support auditory and information processing difficulties. Participants had breaks when challenged with memory recall or emotional overwhelm (McDonald and Genova 2021). Interviews took 1 hour (though some were shorter or longer) and were digitally recorded and transcribed by PC and AB. Participants’ private information was de-identified, and we use pseudonyms to protect participant confidentiality. Participants were offered the opportunity to check their transcripts, though none chose to do so. Due to how TBI can impact memory and information processing (McDonald and Genova 2021), we acknowledge transcription checking can be a difficult task for participants.
Diaries were an alternative option for participants to complete instead of, or in addition to, an interview. The diary method gave participants the choice to respond to questions or write about events as they occurred or when it was most convenient for them. This was a useful alternative form of participation if the dialogical structure of an interview was too challenging (e.g., difficulties with verbal expression). Diaries supplied a ‘participant-led lens’ into the subjective experience of living with a TBI through an opportunity for introspection and self-reflection (Broom et al. 2014, 715). Participants were provided guided questions that were like the interviews, but with a specific focus on recent events:
What did you find helpful or useful today? Why?
What did you find challenging today? Why?
Is there anything else you would like to share about your day?
What would you like people to know about your day-to-day life of living with traumatic brain injury?
It was emphasised that participants could ignore these questions and write about whatever they felt was relevant to share. Five participants selected to complete an electronic diary, four of whom were also interviewed. Participant engagement with their diary varied. For example, one participant made one diary entry per week for three weeks, while another provided a total of 107 entries over a 3-month period. Throughout this article, diary entries are numbered alongside the participant’s pseudonym, while interview data features the participant’s pseudonym only.
After receiving the participant diaries, we catalogued, categorised and analysed the diary entries through thematic coding (the same analytical approach used for interview transcripts). The thematic coding process was a manual and collaborative effort between PC and AB, who discussed and refined the themes. This involved immersion in the transcripts and diary entries for several months, where we identified patterns of meaning across the interviews and diaries separately and collectively. This process was investigational and messy, where we began to identify initial themes throughout (and after) the data collection period. Themes and sub-themes were continuously revisited during immersion (Green et al. 2007), with theoretical concepts identified a posteriori. For example, during our analysis, we noted how navigating relationships after TBI involved feeling rules and emotional management (theme 1) and ‘levels’ of acting (surface and deep acting) (theme 2), with some participants experiencing relational acceptance (theme 3). The research was approved by the University of Tasmania Human Research Ethics Committee (reference number H0027039).
Results
In describing their life before TBI, participants recalled social events and conversations as casual and effortless. In contrast, life after injury came with social adjustments that impact all their social relationships and activities. For many participants, the unpredictability of TBI posed challenges. The fear and frustration of being unheard and misunderstood by others meant some participants would avoid social events, hide their symptoms, or found strategies to ‘fit’ in (Valeras 2010). The ‘invisible’ nature of some TBI injuries meant the participants were often strategic about disclosing their symptoms.
Feeling rules and emotional management
The accepted norms governing social interactions and relationships can become unnatural and difficult to navigate for people with TBI, requiring a level of emotional management to ‘fit in’ with normative conventions. Such emotional regulation can be exceptionally difficult due to the physiological changes that may occur in the brain after injury, as noted previously. People with TBI can have difficulty with feeling rules given the potential challenges they may face in identifying and responding to other’s emotions, facial expressions and tone of voice (Murphy et al. 2022). For example, Holly notes how she shouts comments in ‘social circles randomly in a disinhibited manner which are not polite’ (Holly, diary entry #2). Lily describes difficulties in her workplace relationships due to her ‘expressing her disability’. By this, Lily is referring to the way her TBI magnifies her emotions, where feelings that were once small and manageable have become ‘huge’ and difficult to manage. She experiences some shame in relation to her emotions, as feeling rules frame the ‘right’ and ‘wrong’ ways of emotional expressions:
I feel so isolated in how emotional I am. I don’t know anybody else like this [….]. Nobody wants to be faced with somebody who cries, and I cry all the bloody time (Lily).
Lily’s concern about her crying arose during her interview, as she cried even though she did not feel upset. Crying as a TBI symptom is associated with the pseudobulbar effect – it is not necessarily associated with sadness or depression but is part of feeling or expressing emotions in (what are considered to be) socially inappropriate or exaggerated ways that may not reflect the individual’s emotional state (Engelman, Hammond and Malec 2014). This sits in contrast to accepted emotional norms, where crying is loaded with social meaning including where, when, how and why to cry. Being conscious of this, Lily notes how she ‘should’ interact with others and how to ‘feel’, yet when Lily finds it difficult (or even impossible) to regulate her emotions, she experiences embarrassment due to a lack of inhibition; she cannot restrain her emotions to avoid stigma (Goffman 1963).
Emily – who has had several TBIs – struggles with explosive anger and often finds herself ‘losing her temper’ or having ‘outbursts’. In times of conflict, she fears her emotions will become uncontrollable and damage her friendships. In awareness of feeling rules, Emily said there are ‘right’ and ‘wrong’ ways to express anger and respond to feelings of frustration: ‘I just lose, lose it all of a sudden, I don’t mean to […] words blurt out of my mouth. And it’s like, totally inappropriate and totally wrong’ (Emily). When feeling frustrated, she will remove herself from group settings to avoid being seen as ‘rude’:
I’ve got to [leave, or] I’ll say something really mean that I shouldn’t say and ruin whatever relationship there is. And [then] I’m the one that ends up looking bad. So as much as I might feel like I’ve justified in what I’m saying, I know it’s wrong. (Emily)
What Holly, Lily and Emily’s experiences highlight is how people living with TBI are aware of how their TBI symptoms complicate feeling rules which define (in)appropriate ways to ‘act’. For Holly and Emily, the demands of social etiquette dictate a feeling rule – when it is ‘reasonable’ or socially unacceptable to feel and express anger. This is deeply social and political, where not everyone is ‘allowed’ to express anger even in the same social setting (see Wingfield 2010). Holly, Lily and Emily’s discomfort is illustrative of disabled people’s experiences more broadly (including ‘melancholia’), related to social prohibitions in feeling or expressing anger (see Watermeyer and Swarts 2008; Watermeyer 2017). However, the desire to avoid social spaces and interactions shows the personal cost of emotional management, where it can impact people’s sense of self and wellbeing (Hochschild 1983), and their opportunities to meaningfully connect to others.
The fear of expressing an ‘inappropriate’ emotion can be a form of self-surveillance, with participants monitoring and regulating themselves in line with social expectations. This can mean removing oneself from social situations (as per Emily, above) or disengaging with the situation by staying silent, as Alex and Ruby recall:
A few people said to me ‘you’re quiet today’. There’s a good reason I’m quiet because if I didn’t monitor my thoughts and emotions I could have said or done something that I’d regret. (Alex, diary entry #49)
But people think I’m too timid or too shy or that I don’t want to speak to them. And it’s none of that. It is that I don’t want to say the wrong thing. I don’t want to hurt people […]. I can’t turn up and be [Ruby] with a disability. (Ruby)
Emily, Alex and Ruby act in ways that will meet normative social expectations. They disengage socially so that they ‘save face’ by ensuring that their actions do not offend and hurt others (Goffman 1967). Furthermore, Ruby is aware that expressing herself as she is now (‘Ruby with a disability’), has not been beneficial for her relationships, so she stays silent. In addition to his diary entry above, Alex further wrote that he actively chooses ‘a positive attitude as opposed to going with how I was thinking and feeling’ (Alex, diary entry #61). These moments of social self-regulation were reflective across participants who felt pressured to ‘keep up’ or align with social demands and etiquettes. Considering the difficulties they encounter in their relationships, it is understandable that people with ‘invisible disabilities’ such as TBI may feel compelled to do ‘whatever it takes’ to hold onto or create a version of themselves without TBI (Kattari, Olzman and Hanna 2018).
Surface and deep acting
In the previous section, it was explored how the participants were aware of feeling rules and how these rules establish relational obligations in different parts of their life. For people with TBI, they may change and shape their emotions to ‘fit’ what they consider necessary for a ‘good relationship’ (McQueen 2023) including feigning interest in conversations or (trying to) manage their feelings in social interactions. This can involve surface acting. Holly, who earlier noted her struggles with regulating emotions, places great efforts into trying to ‘feel’ a sense of closeness with others. This proves difficult however, due to changes in her memory and her struggles with social skills including the interactional norms in conversations. Holly consciously ‘acts’ engaged with others through smiling, nodding and mirroring the conversational partner:
In my actions, I’m trying. And I’m making sure to keep in touch with people and I’m making sure to call people. The person [sic] who I know I can talk to. But […] it’s an act like, emotionally. (Holly)
I am trying so hard to smile, to mimic the other people’s facial expressions, to nod at the right times. (Holly, diary entry #11)
The social pressure to hide their feelings through surface acting and to align with feeling rules, is burdensome for many of the participants. Their experiences reveal how they may surface act and mimic emotions that they know are appropriate for the situation, but which may be at odds with their internal emotions. Participants frequently recall times when they put in effort to ‘try to feel’ a certain way, so they could ‘fit into’ their social relationships that existed prior to their injury. Notably, they put in this effort even if it was uncomfortable or unsuccessful (Hochschild 1979). Zayne wrote that his daily life includes managing his symptoms without people noticing, which includes masking his feelings:
Whilst looking at me it might look like everything is okay, often I am not okay in terms of how I am feeling. I often feel spaced out, dizzy or frustrated for no reason at all and this has only occurred after becoming concussed. (Zayne, diary entry #1)
The effort invested by Zayne and other participants in surface acting allows them to present themselves as someone without emotional, social and functional difficulties, essentially ‘mirroring’ the lives of non-disabled people (Alston, Jones and Curtin 2012; Campbell 2008; Campbell 2013; Valeras 2010). Concealing their experiences of TBI, however, may inadvertently contribute to misunderstandings on the ongoing, everyday impacts of disability and TBI (Campbell 2013; Valeras 2010), and thus may not help them to feel understood or supported even if they describe this process of surface acting in a positive light.
Another way that the participants deal with social situations through surface acting is to present a ‘fake’ version of themselves or a ‘persona’. Hannah shared how in the earlier stages of her TBI, she performed or ‘acted’ the same as everyone else: ‘I was able to fool everybody else, including myself, into thinking that I was, you know, for the most part, functioning like everybody else’. While these efforts by Hannah could be seen as surface acting by disguising how she feels, it is notable that she had a strong emotional investment to present as someone unaffected by TBI; a desire to embody and feel the externalised emotions she was displaying. Hannah’s experience thus relates to how people may ‘perform’ to ultimately become the ‘someone’ that their performance projects, seeking to translate their surface acting into deep acting (Hochschild 1979). This was also recalled by Zayne, who described in detail how he constructs a version of himself without the ongoing effects of TBI:
I put a lot of pressure on myself to maintain like a constant, [Zayne] persona […] A [Zayne] personality—this is, this is who I am. But it’s, it’s a lot of work to maintain that, especially when I’m having a bad day […], there’s a lot of work that goes into trying to stay yourself whilst you’re going through those bad periods. Like, my symptoms could have a bad flare up and I’ll be, I’ll be dizzy, or have thumping headache and it’s still the ability to try and get out there, put a smile on your face and, and be happy. […] Symptoms sometimes just come on without warning and there’s nothing we can really do about it […]. I’m not sure if “persona” is the right word, but like as in trying to be me without being constantly moody and grumpy and upset and not wanting to go out. So almost like putting on a brave face to be able to go out and socialise and to not be excluded and forgotten. (Zayne)
Zayne’s ‘persona’ is multifaceted. His sense of self is not who he is when experiencing his TBI symptoms, which he seeks to minimise so that it does not threaten to overwhelm who he is and his everyday life. Zayne’s performance is an internal and relational process; he believes that his ‘persona’ needs to present as emotionally consistent. To achieve this, Zayne stirs up feelings he wishes he had (happiness) and tries to weaken or block the ones he dislikes (grumpiness and moodiness), in the hope that through shaping his emotions, the outcome will be achieving his sense of self (who he believes he is) and avoid social exclusion. As such, Zayne’s effort to maintain a ‘persona’ means disguising his TBI symptoms from others. Whilst Zayne does not question what social forces could contribute to ‘putting on a brave face’ (whether, i.e., melancholia – Watermeyer 2017; or feeling rules), this does reflect ableist expectations (that being non-disabled is desirable). However, we respect that internalised ableism is not how Zayne (or Alex who follows) understand their experiences or the choices they make.
Similarly to Zayne, Alex describes using deep acting to create a carefully curated ‘persona’ that works across his relationships and social interactions:
I create in almost every environment, including my marriage, the characteristics, and the aspects of a person who I think I should be in that environment…I very often have to rehearse what I’m going to say. […] I’ve got to play it through my mind. Before I do or say [anything], I plan to make sure that it’s ethical, appropriate, and reflects my beliefs and values. So, I’m representing myself in a way that I would like […]. Of course, if you’re going to a dinner party or something we do, you know, we put on our social graces and so on and so forth. But we do that automatically, whereas now, how I am as [Alex] is designed, rehearsed, and practiced […] I can’t rely on my thoughts and my feelings to plan my behaviour (Alex).
Alex’s experiences are notable for many reasons. First, Alex actively prepares and adapts himself for different social situations and interactions, demonstrating how his performances are contextually knowledgeable and responsive. Second, Alex explains that in these interactions, he wants to reflect his ‘beliefs and values’. In this way, Alex’s feelings or behaviours in social situations are self-modified (similarly to Zayne) to meet who he is or who he wants to be. His fear that he may stray from this carefully controlled performance results in his active awareness and maintenance of his emotions, and the translation of these into his desired social performances and interactions. Alex notes that others (more generally) do this too by drawing on an example of a dinner party, but his acting requires much more investment and energy. This relates to the third point of interest from Alex’s interview – the way that he continuously and actively works to rehearse and sustain his performance in different parts of his life, shows the significant emotional work that he invests in contextually informed performance management while also referencing a time before his TBI where he experienced emotional and behavioural predictability. And like Zayne, these efforts invested by Alex demonstrate the significant amount of personal effort expended to meet a desired self and performance.
The ‘persona’ participants described is, for them, a necessity to move and interact with the world in a way that aligns with who and what they were prior to injury, or who they believe they are or want to be. For our participants, surface and deep acting functions to present a desired version of themselves, one who can interact seamlessly with others and with social acceptance.
Relational acceptance
Not all participants used emotional management, surface acting or deep acting. For a few participants, their relationships with key people grew stronger after TBI. For example, Shay said she became closer with her mum since her TBI because they could understand each other’s experiences of living with fatigue. Lily felt she could now relate to her sister who was born with learning difficulties, noting a shared experience of alienation from friends and family.
Some participants also created their own feeling rules. For these participants, surface or deep acting were temporary, used only in certain contexts or as a ‘first step’ in self-acceptance following acquiring their TBI. For example, before her injury, Lily was socially extroverted, and she uses this memory as motivation to solidify her new identity as someone living with disability. After hospitalisation and a stint of unemployment, she took up volunteering to avoid social isolation:
I needed to learn how to interact with the public again. Because I had been so divorced from the public for so many years [recovering from TBI]. I loved people and I needed to learn how to deal with people again […]. So yeah, I volunteered in the shop […] then became involved with [activism] (Lily).
During this time and her eventual return to work, Lily did not hide her TBI and became an advocate for disability rights. In this context, Lily has the freedom to be herself, but in other contexts she can struggle (as discussed earlier). As such, alongside the participants’ efforts in emotional management, surface acting and deep acting, there are examples of where participants assert their identity and have emotional support. This enables them to experience confidence in social interactions and friendships.
When discussing the way his family relationships have changed, Cody had a strong desire to subvert feeling rules:
People with a brain injury should be given a bit more license to not be that interested in certain topics. Because you can pretend to be excited [but] I just kind of don’t feel that excited […]. It’s not a moral failing or social faux pas, it’s more of a – [pause] – in my reality, the world is a lot larger and more complex than it was pre-head injury (Cody).
Cody acknowledges the pressure of normative feeling rules but emphasises how they are incompatible with his life after injury. For Cody, his meaningful relationships are grounded in acceptance, not the demands of feeling rules with the associated need for (constant) emotional management. These types of relationships do not require the need to ‘act’ or exchange the ‘right’ emotions (as per a feeling rule) nor require the effort of translating surface acting into deep acting. Rather, these environments and relationships are supportive, allowing people with TBI to be recognised and valued as they are.
Whether participants explicitly associated living with a TBI with having a disability, varied. For those who identify as having a disability, they do not refer to using a persona but rather how they adapt to their ‘new’ reality of living with TBI. This includes not hiding their symptoms or disability for social acceptance. Some shared that they have become more ‘themselves’ after their injury through being more in tune with their emotions and are resultingly assertive and extroverted. For example, Isla states: ‘I don’t seem to have that shyness that I used to have. Which I’m not unhappy about’. Similarly, Cody has become better with identifying and setting boundaries in his relationships, with his ‘impulsivity’ allowing him the freedom to finish conversations he feels bored with: ‘I was talking to someone the other day and I’m like, “Okay, I don’t wanna talk about this anymore. I am setting a boundary, this is depressing me”’.
When reflecting on their relationships, the strongest and most consistent friendships for participants are those where they feel the freedom and support to express themselves. Zayne said his long-term friends understand the nature of his ongoing TBI symptoms. Ruby said the acceptance, kindness, support and flexibility from friends helped her the most in her recovery. Astrid describes how her friends are considerate when she needs to cancel her social plans due to her TBI symptoms. These participant experiences are a reminder that relationships are a shared process, and the responsibility for maintaining friendships does not rest on one person but involves cooperation and consideration. Similarly, others expressed gratitude for friends and family who have been supportive of them and are willing to be adaptable and flexible:
My family and the friends—that are truly my friends—their love, to me, hasn’t changed, no matter how […] moody and argumentative I have been. Because your mood is really affected [after TBI] (Jenny).
When friends and family express willingness to learn about TBI symptomology and disability, the participants feel accepted and are less likely to recall encountering the demands of ableist feeling rules and a desire to hide their symptoms. These relationships positively shape how they see themselves and their social world and supports their own self-acceptance and identity after acquiring a TBI. For example, when Ellie tells people of her chronic pain and TBI symptoms, she does not want this to discourage people or change how she socialises:
Just because most things are in some way harder or painful to do now hasn’t reduced my desire to engage in them at all. So don’t stop inviting me to things because I have a TBI. Sure it might mean I need to leave early, it might mean I have my earplugs in […]. I will probably be recovering from a social event for at least a week but unless the event was boring, I’m probably still glad I went! (Ellie #1)
Family and friends who embrace how participants interact with them socially, and seemingly without judgement, means the participants are less likely to feel pressure to comply with feeling rules (and may disregard them entirely). Through their interviews and diary extracts, the participants demonstrate that relational acceptance may minimise self-criticism and self-surveillance, and can open opportunities to better support for people with TBI.
Discussion
In this article, we have provided insight into how people with TBI engage with emotional management by exploring how they express or disguise their emotions in their social relationships and social interactions. As people with TBI can experience difficulties with their emotional regulation following a TBI, this can cause increased emotional self-surveillance, alter how they relate to and be supported by others, and can result in social withdrawal and isolation. Deeply aware of the feeling rules and emotional management, the participants may invest significant effort to regulate their emotions to fit with normative expectations across different social contexts which can eschew disabled ways of being and doing. In contrast, some participants found acceptance for how their TBI impacts them and their emotions among family and friends, or were able to empathise more greatly with others in their lives who had experienced various challenges.
The degree to which people living with TBI experience acceptance and support after TBI can challenge their relationships, family dynamics and friendships. Participants shared their difficulties with managing social interactions due to their emotions that, for some, contributes to their desire for social isolation. To meet personal and social expectations of how to feel, what to feel, when to feel and how to express that feeling, many participants use both ‘surface’ and ‘deep acting’. Significantly, social isolation and limited social engagement can impact employment, one’s place in community, sense of self and quality of life for people with TBI (Salas et al. 2016). While some participants may need to regulate their emotions to avoid harm (e.g., due to violent expressions), social relationships that are not governed by normative (ableist) feeling rules can help people with TBI to experience social inclusion and acceptance. This was seen in the examples from Zayne, Astrid, Ruby and Jenny, who emphasised how small accommodations by friends and family, allowed them to express themselves without fear of judgment, to be understood and supported.
It is important to note, however, that it is not always the emotional changes themselves that are challenging for our participants per se, but how people react and respond to them. Much in the same way that feeling rules are learnt through socialisation, people with TBI become socialised to increase their internal self-surveillance and emotional ‘regulation’ in a way that does not feel normal but which allows them to maintain an active social life, essentially experiencing a form of emotional marginalisation (see Eickers 2023). People with disabilities may hide or mask their symptoms, emotional difficulties, or ways of being and doing, to be socially accepted. Yet through such activities, they risk internal and social isolation by not being truly known or fully accepted by themselves or others (Campbell 2013; Watermeyer and Swartz 2008). In addition, emotional (dys)regulation should not just be considered a ‘symptom’, but a valid response from people with disabilities to emotional and social marginalisation (Watermeyer and Swartz 2008). Nevertheless, we cannot deny that some people with TBIs may express their emotions in ways that can threaten the safety of others and necessitates emotional self-management, and we also respect the participant’s agency in determining what emotions they want to feel and express.
The strengths of this research lie with our participants; their willingness to share deep insights into their lived experiences with TBI in interviews and diaries, which would not be able to capture through quantitative approaches. In addition, the use of diaries provided participants a flexible method to engage in a reflective practice by recording significant events and insights as they occurred, and choosing to share what they believed to be the most relevant information. However, the consent process involved proficient reading, and writing comprehension and communication skills, which limited the range of participants who might be able to participate. Limitations aside, our sample included a range of ages, scale of severity of TBI symptoms (as reported by participants), and a range of complex needs and recovery experiences, which we captured through roughly 25 h of interviews plus five diaries. Furthermore, while the use of the TSQ strengthened the project’s trauma informed approach, using a TSQ is not without limitations including that the questions are easily open to interpretation (see Frissa et al. 2016). Nevertheless, this process helped to support the participants and the researchers in providing safety in this project.
Our findings indicate that participants can experience feeling rules as ableist (though they do not use this phrase explicitly), as they must strategically navigate other people’s emotional expectations in fear of damaging relationships or to avoid experiencing stigma, exclusion and marginalisation. This builds on existing work (such as ‘melancholia’) on how disabled people can experience social prohibition, stigma and exclusion for expressing their disability or their emotions (see Watermeyer 2017; Watermeyer and Swartz 2008). It also fills a significant gap in existing research on the lived experiences of TBIs, through an in-depth exploration of how emotional management can be socially challenging for, and place significant pressure on, people with TBIs. In doing so, we remain cautious of reducing our participant’s experiences to melancholia and internalised ableism in respect of their own agency. We further acknowledge that while emotional regulation can be difficult following a TBI, emotional displays should not be dismissed as (only) a TBI symptom – they may reflect a lack of acceptance, social isolation and marginalisation and a response to limiting and disabling ableist expectations. Those wanting to create a supportive environment for those living with TBI, should provide space for individual self-expression, independent of the dominant feeling rules and social norms. This would involve acknowledging a full range of emotional expression (or lack thereof) and developing an understanding on how an individual living with TBI experiences social situations. Emotional regulation through external social pressure contributes to people with TBIs hiding their emotions and emotional difficulties, as much as it disguises their intense joy, overwhelming happiness and pleasure, for the sake of other’s comfort.
Data Accessibility Statement
The authors confirm that the data supporting the findings of this study are available within the article. The data that have been used are confidential.
Acknowledgements
We thank Dr Fiona Proudfoot for her assistance in the early stages of this project. We thank the participants for their time and contributions to this study.
Competing Interests
The authors have no competing interests to declare.
Author Contributions
PC led the theoretical focus of this article, and AB and PC contributed to data collection, data analysis and manuscript development. All authors contributed, reviewed and approved the final manuscript.