A perceived injustice? Querying the ‘social’ in the biopsychosocial approach to vulvodynia

Abstract

Vulvodynia is a poorly understood chronic pain condition that has attracted a range of investigations aimed at identifying biological, psychological and social factors potentially contributing to its aetiology and maintenance. Recently, there has been a call by pain science researchers to classify vulvodynia as a central sensitisation syndrome without relevant nociception, warranting a biopsychosocial as opposed to strictly biomedical approach to care. Framed through autoethnographic storytelling, this article troubles the current biopsychosocial approach to vulvodynia in research and practice, particularly the emphasis on psychometric testing, positive affect and makeover logics of personal transformation, as well as the disavowal and pathologisation of patient critique. It does so by drawing upon disability studies research, challenging the neoliberal logics of purportedly biopsychosocial approaches as well as feminist scholarship implicating gendered forms of power in creating challenges for those with vulvodynia, as opposed to maladaptive psychology or poor critical literacy. The article argues for structural competency and a medical humanities component in chronic pain education and advocates for a greater feminist and disability-informed presence in vulvodynia research and activism.

Introduction

Vulvodynia, often defined as chronic vulvar pain lasting more than 3 months without an identifiable aetiology (Bornstein et al., 2016), has long been neglected within medical research and practice. Over the last 40 years, however, a burgeoning number of studies have appeared dedicated to classifying the condition and its subtypes, identifying factors contributing to its development and maintenance, its quality-of-life burden and potential treatments. Most researchers currently consider biological, psychological and relational factors to play a role in the development and/or exacerbation of the condition, though it is not known how these factors interrelate (Bergeron et al., 2020). While an interdisciplinary approach to management is often seen as best practice (Bornstein et al., 2016), people with vulvodynia also report confusion in determining which type of healthcare provider they should see (Lountzi and Durand, 2024).

A critical factor in this confusion is that researchers and clinicians differ as to whether they perceive tissue irregularities or maladaptive neuroplasticity as the key driver of symptoms and target for intervention, even when clinical presentation is similar. Recently, there has been a push from the pain sciences to conceptualise vulvodynia as a central sensitisation disorder or form of ‘complex pain without relevant nociception’, similar to Complex Regional Pain Syndrome (Torres-Cueco and Nohales-Alfonso, 2021). Importantly, this thesis lacks consensus, as some researchers continue to argue for relevant nociception in subtypes of vestibulodynia (a localised form of the condition) in particular. Furthermore, Torres-Cueco and Nohales-Alfonso’s advocated strategies – pain education, desensitisation and gradual exposure to ‘feared’ activities – have been more greatly studied in musculoskeletal pain than in persistent pelvic pain conditions (Mardon et al., 2024). While these strategies are already available to people with vulvodynia through pain management programmes, chronic pain apps and some individual healthcare providers, there is currently limited evidence to support the authors’ contention that these methods are capable of ‘significantly eliminating pain and disability’ associated with the condition. Nevertheless, this argument has critical implications for how vulvodynia is understood, researched and treated.

This article engages with Torres-Cueco and Nohales-Alfonso’s call to treat vulvodynia from a biopsychosocial perspective that considers the biological, psychological and social aspects of complex pain. While a more holistic understanding of vulvodynia experience beyond the biological is welcome, this call needs to be placed in dialogue with criticisms of the biopsychosocial approach as often fragmented in its application, falling back on mind-body dualism and relegating sociocultural context to a ‘passive background setting’ (Cormack et al., 2022: 2282). More strongly, disability researchers have argued that the biopsychosocial approach is often complicit with neoliberal logics of healthcare that champion personal responsibility, free will and motivation as integral to health, while downplaying biological factors and structural inequities that shape health experience, access to care and resources (Hunt, 2024). A truly biopsychosocial approach to vulvodynia, I argue, involves challenging the conditions in which vulvodynia emerges and is lived, continuing the critical legacy of early feminist work in this space.

As someone who lives with vulvodynia, I have had my own encounter with the biopsychosocial approach through a pain management programme, which began with a 2-hour meeting with a doctor, a physiotherapist and a clinical psychologist. Prior to this meeting, I was invited to complete a series of quantitative questionnaires on my pain and its impacts on my life, aimed at determining whether I ‘catastrophise’ about my pain or exhibit ‘maladaptive’ coping behaviours. Within the meeting, the clinicians informed me that their approach to care considers the ‘whole person’. They then asked me a series of questions, including how my pain started, the symptoms and activities it interferes with, as well as attempting to get a read of my personality. Am I depressed? Anxious? How well do I regulate my emotions? Do I get along with my friends and family? While responding to these questions, I also pointed to the role of structural inequities in my pain journey. I explained that the failure of the healthcare system to diagnose the condition and provide any pain relief options for almost a decade deprived me of agency within clinical settings and exacerbated psychological stress, a finding echoed by others with vulvodynia in broader qualitative literature (Shallcross et al., 2019). I explained that gendered forms of power, including the privileging of male sexuality, the cultural invisibility of pelvic pain and a ‘postfeminist’ culture championing sexual autonomy (Gill, 2007), contributed to difficulties in my younger years. Notably, postfeminist ideals have been implicated in contributing to a negative sense of self for those suffering with dyspareunia (Braksmajer et al., 2022), with affected women engaging in forms of sexual labour (disciplinary, performative and avoidant) in relation to heteronormative sexual scripts (Cacchioni, 2015). Eventually, I requested a copy of my report before agreeing to take part in a group pain management programme (PMP) that included participants with a range of conditions characterised by chronic pain, such as migraines, arthritis and endometriosis.

When I received my report, I felt that my implications of institutional power and other sociocultural factors in my vulvodynia journey were minimised, while my physical symptoms and psychological history were transcribed in careful detail. These feelings intensified when I took part in the PMP itself. While purportedly biopsychosocial in design, the course was highly individualistic in focus, taking a cognitive behavioural therapy approach to reframing maladaptive thought patterns while advocating self-management strategies relating to exercise, sleep and stress alleviation. The PMP’s singular week on pain as a social experience had a unidirectional focus on how people with chronic pain communicate with those who support them and the impacts of our pain on others, rather than the role of social structures in elevating risk for chronic pain or in creating barriers to social inclusion.

Modes of psychological thought that were drawn upon were curiously apolitical and socially decontextualised, for example cute and colourful evolutionary psychology graphics on the ‘reptilian brain’ to explain survival responses. Given that, in Aotearoa New Zealand (where I currently reside), chronic pain disproportionately affects Māori, disabled people and those living in socioeconomic deprivation (Ministry of Health, 2023–2024), the emphasis on the ‘primitive brain’ in PMPs and pain science materials over structural stressors is a disconcerting feature. Furthermore, my PMP endorsed corporate-style metaphors that championed individual choice and transcendence over chronic pain, such as ‘be the boss of your pain, don’t let your pain be the boss of you!’ despite some group members experiencing significant and long-standing impairment. Feeling frustrated, I began to query this individualistic focus and what I felt was a corresponding erasure of contextual influences on pain experience. At times, the clinicians responded through deflection, gently redirecting my focus back to self-management strategies. At other times, they responded that they were aware that contextual factors may shape the pain experience; however, as the individual could not control these factors, there was little point in integrating them into the course.

Autoethnography

My thesis here is predicated on a feminist autoethnography of experience and reading a body of literature that is produced about people with vulvodynia for a broader community of scholars, yet is not really for us in the sense of imagining us as an intended readership or sufficiently inclusive of our stories and viewpoints. As autoethnographic methods have grown in popularity, there have been subsequent moves to divide these approaches into ‘types’, and I have accordingly been requested in peer review to situate this essay as an analytic autoethnography (Anderson, 2006). This recommendation has provided a fruitful opportunity for reflection in that my writing clearly contains an allegiance to traditional academic style, and perhaps a level of guardedness that one is less likely to find in an evocative autoethnography with its emphasis on creative experimentation and affective introspection. This may be indicative of a residual desire to withhold emotion, given that charges of emotional irrationality continue to be weaponised against those of us with so-called ‘contested’ conditions. Yet, I am also uncertain about the separation of the analytic from the emotional in its potential to reproduce the dichotomised logics that have long made trouble for women and marginalised people seeking healthcare. I consider my journey – and my writing and reading process – to be simultaneously emotional and analytical, even if this does not always translate on the page.

Due to methodological hierarchies in medical research, existing autoethnographies of vulvodynia are siloed in the field. Nevertheless, autoethnographers have made valuable contributions exploring how medicine makes contestable truth claims about the body; how vulvodynia is socially constructed and interpreted across intersections of gender, ethnicity and sexuality (Dumaresque, 2020; Taylor and Ridgway, 2024); and how the condition is experienced within spheres such as work (Quah and Ridgway, 2022), disrupting a dominant research focus on sex and relationships. Dumaresque’s autoethnography is an important precursor to my own, arguing that neuroplasticity discourse is embedded within neoliberal logics that serve to justify psychological interventions while ignoring the role of social and state violence and the health sector’s complicity within it.

Autoethnography situates the writer’s story in relation to cultural context for political purposes, and as such is a mode of storytelling that is demonstrative of the ‘personal as political’ (Ettore, 2016: 4). Accordingly, this autoethnography is a written challenge to my PMP’s contention that people with chronic pain have no ‘control’ over the structural dynamics that seek to shape, position and know us. This is not, however, to suggest that this is a logic specific to individual clinicians, programmes or research articles. Rather, these contentions are reflective of the dominant capitalist logics that structure our institutions, as well as our inner psychic lives, as hegemonic common sense and, in this case, ‘best practice’. While a perceived limitation of autoethnography might be that its arguments are framed through individual experience, the foregrounding of the researcher’s role in production is also a strength (Ellis et al., 2011). This is because in much of the literature on vulvodynia, theoretical and methodological traditions, statistical tools and success metrics are still frequently and problematically framed as value-neutral and objective.

On this point, it is imperative to note that while there is commonality in patient storytelling, there is also divergence. My experiences with seeking treatment for this condition are shaped by my positioning as a white, cisgendered, middle-class individual within the settler-colonial environments of Australia and New Zealand. In fact, a point to consider relating to the biopsychosocial approach in New Zealand lies in its apparent compatibility with Indigenous models of healthcare, namely Te Whare Tapa Whā (Durie, 1985), relative to the biomedical model. Te Whare Tapa Whā is a holistic approach to health embedded within a Māori worldview, in which health is not only a physical property (taha tinana) but also has emotional (taha hinengaro), spiritual (taha wairua) and social (taha whānau) dimensions. However, as Zoe McGavock (2011) argues, applications of the biopsychosocial framework frequently do not consider systemic inequity or cultural specificity, potentially perpetuating deficit-based thinking around Māori health. In contrast, Māori-driven solutions to health inequity often focus on addressing its interrelationship with other areas of inequity, such as housing, education and justice, as well as the necessity of promoting tino rangatiratanga (sovereignty), mātauranga (Māori knowledges), tikanga (customs) and te reo (Māori language) (Rochford, 2004).

Storying vulvodynia: hysterical legacies

Vulvodynia has long been subject to psychological interpretations that have served the interests of dominant groups. Indeed, as noted by other autoethnographers, contemporary clinical sense-making of the condition can be traced back to Sigmund Freud’s theories of hysteria, in which psychological (usually sexual) traumas were thought to be converted into physical maladies. Women’s emotions were pathologised as exaggerated and abnormal, with an attendant failure to consider possible organic components to various illnesses or the social context in which illness is lived. As Maya Dusenbery (2018) explains, physicians in 19th-century Europe frequently attributed (white, class-privileged) women’s health concerns to a failure to undertake appropriately feminine roles, while concepts such as secondary gain facilitated a culture of patient blaming, as experts alleged there were benefits to staying sick. Furthermore, Black and working-class women were deemed less susceptible to such illnesses, creating a dichotomy between the white, nervous patient whose gynaecological maladies threatened reproduction and the comparatively robust Black or working-class woman ideally suited to labour and medical experimentation (Briggs, 2000). To this day, racist ideas about Black bodies as less susceptible to pain have been found to contribute to the undertreatment of pain in this population (Hoffman et al., 2016), with racialised stereotyping thought to be an ongoing impediment to effective healthcare for Black women in the United States (Azim et al., 2024). As the biopsychosocial framework encourages clinicians to consider psychological and relational factors in pain, there is an ongoing risk that a structurally incompetent healthcare system will continue to produce clinicians who fall back on unwarranted gendered, racialised and classed forms of judgement when working with populations with pelvic pain.

In my experience interacting with the medical system, I have encountered a remarkable persistence of narrow psychoanalytic ideas in contemporary interpretations of pain neuroscience. It should be noted here that the central sensitisation hypothesis supports multiple pathways into the chronic pain state, including initial physiological triggers (e.g. chronic infections or injuries) as well as a wide range of psychological traumas that likewise may ‘rewire’ the brain for pain and may be connected to structural vulnerabilities. This indicates that the correlates for chronic pain likely differ for those affected, and is presumably why pain management programmes ask patients to narrate their chronic pain journeys before devising a management plan. Nevertheless, it is still possible to encounter clinicians who hold specific views about the causes of vulvodynia, for example that it is always related to the patient’s (perhaps unconscious) attitudes to sex. This occurs in a manner disproportionate to pain conditions affecting other parts of the body. It is a consequence, too, of a body of research that frequently conflates vulvar pain (the condition) with sexual pain (one of its symptoms) in a manner that encourages narrow hypotheses of cause and casts the non-sexual social contexts in which we experience pain as irrelevant.

Earlier in the treatment journey, I encountered a physiotherapist who believed that vestibulodynia was specifically caused by being raised with strict religious values that contribute to guilt around sex. As such, I found myself working to convince this physiotherapist that I do not come from a particularly religious family and did not hold strongly fearful views about sex prior to the pain (although certainly having pain has produced fear around it). The physiotherapist then began to wonder if my postgraduate education could be the problem, suggesting that I might be watching too many films involving ‘abused women’, generating a somatic response. While this suggestion was likely offered as a feminist interpretation of vulvar pain, I cannot help but recall how (white, middle-class) women’s alleged nervous weaknesses were historically employed as evidence for their unfitness for higher education (Briggs, 2000). This story is not meant to suggest that vulvodynia can never be the result of a specific traumatic experience, whether sexual or otherwise. This is certainly a possibility in the pain science interpretation, and to suggest otherwise would risk a form of intra-patient invalidation. Rather, it aims to demonstrate how legacies of psychoanalytic thought, as well as stereotyping of individual patients, work to circumvent broader and deeper consideration of the structural complexities of these conditions. It also endeavours to show that these narratives can pre-exist meaningful collaborations with patients, ignoring our own histories and sense-making of the condition, and seeks to contain us in ways that can be alienating to a patient group that is likely far more diverse. While the term ‘hysteria’ has been retired, the emphasis on hypersensitive nervous systems and emotional excess has been retained, with psychological profiling of women with vulvodynia comprising a substantive portion of contemporary research in the field. Usually situated within pain science interpretations of vulvodynia, such profiling is often described as offering quantitative insights into correlating psychological factors, warranting ‘psychosocial’ approaches that are nevertheless solely targeted at the level of individual psychology (e.g. Andersson et al., 2023; Di Gesto et al., 2025; Nimbi et al., 2024). However, many such studies continue to minimise the role of power exercised within the broader social structure and a more complex consideration of the sociocultural drivers of interpersonal interaction, in favour of determining maladaptive character traits, cognitions and/or select adverse experiences that might distinguish individuals with vulvodynia, either explicitly or implicitly, from ‘healthy controls’.

Structural inequities nevertheless have a tendency to leave their imprint on research findings and conclusions. Nimbi et al.’s (2024) study with 357 Italian women with vulvodynia aiming to determine the role of ‘psychotic’, ‘neurotic’ and ‘immature’ defence mechanisms, traumatic experiences and personality factors in predicting Central Sensitisation Inventory (CSI) levels and quality of life concludes, for example, that women of lower socioeconomic background and with lower education levels had higher CSI levels. A higher CSI level within the study justifies a greater role for medical surveillance as well as self-management strategies, cognitive behavioural therapy (CBT) and educative interventions aimed at improving an individual’s ‘internal locus of control’. Yet, the reader gains little insight into the ways in which socioeconomic inequities may have shaped participant responses and/or their particular experiences with vulvar pain, for example in terms of financial security, access to healthcare, degree of agency in clinical encounters or other hypothetical stressors. Affect, emotion and behaviour are frequently divorced from sociocultural context within mainstream psychological approaches to vulvodynia, which then locates the need for change exclusively within the patient, rather than the political, economic and social order, or indeed with others in the patient’s relational orbit. In contrast to the research focus on maladaptive traits and (pathological) emotional responses to trauma, feminist research has implicated normative gendered scripts as well as linguistic and social taboos in naming and discussing vulvovaginal pain (Labuski, 2015), in creating challenges for those with this condition. Such research occurs in parallel to positivist psychological approaches and implicitly calls into question the figure of the healthy control as a psychological yardstick, yet has not proven sufficiently disruptive to mainstream psychology’s logics and conclusions.

Multiple studies have shown that women with pelvic pain conditions often take a subordinate approach in their sexual relationships and prioritise their partner’s pleasure by continuing to have painful sex (Ayling and Ussher, 2008; Elmerstig et al., 2013; Lavò, 2019). Ayling and Ussher identified feelings of shame and guilt associated with adopting subject positions such as ‘inadequate woman’, while Kaler’s (2006) participants likewise described themselves in terms of gendered failure and abnormality. These scripts are additionally informed by intersecting racialised enculturation, for example persistence through pain due to Strong Black Woman or Superwoman schemas, which Malone et al. (2022) locate within a history of slavery and oppression in the United States. These scripts, however, are not necessarily reproduced unconsciously. Rather, they can be sites of hegemonic struggle in which participants recognise the role of power in their thinking, yet remain challenged by its continuing presence in their lives. This finding supports social justice and community-oriented feminist approaches to creating social change around the issue of painful sex, in particular. They also support research and practice that recognises our critical capacity to interpret and participate in remaking our worlds, rather than assuming our difficulties are due to a naivety in need of rectification by comparatively enlightened clinicians.

While there has been thought-provoking work on the gendered and racialised aspects of vulvodynia, my experience also indicates a need for greater attention to the role of ableism. One of the more challenging aspects of reading the literature has been seeing myself in these participants’ accounts of suffering through painful sex, and their difficulties in communicating with peers and partners. Yet my difficulties were also the result of an internalised belief that having a pelvic pain condition made me lesser in some way. That to be able-bodied was a preferable and more desirable way of moving through the world. That I would be unwanted. In fact, despite living with vulvodynia for two decades and current treatments only being moderately effective against the condition, I long held a conviction that I would get my able body back. Furthermore, I believed I could not lead a full and happy life until I did so. To be clear, this is not a ‘maladaptive’ thought, as able-bodiedness does confer very real forms of structural advantage and disablism is a very real form of oppression. Nor have I always accepted these feelings uncritically. Being introduced to feminist thought granted me access to alternative narratives through which I could make sense of the pain early on, as has, more recently, work in disability studies and the collective knowledge produced by women’s storytelling. I would have been far better off approaching sexual encounters with an attitude of what my ‘vulva needs rather than what his penis expects’, as Labuski (2015: 7) puts it, instead of attempting to feign able-bodiedness and ending up with worsening pain. Yet, even when I experienced more supportive partner responses, this rarely translated into a discussion of how we could do things differently. The disclosure would hang awkwardly in the air as a symptom of the cultural disappearance and silencing around these conditions within a patriarchal society.

Pain is pain: marginalising social and historical differentiation

A further means by which sociocultural and institutional power can be minimised in terms of both pain experience and trajectory is through the questioning of the value of specific chronic pain diagnoses at all. This idea features within a school of thought that purports pain to be readily treatable, and perhaps even eradicable, once the patient understands how it works. It promotes brain retraining as the answer to a broad range of conditions characterised by pain and fatigue, and as such has proven to be a seductive (and highly marketable) concept within and beyond medicine. For example, in Explain Pain, a manual for people living with chronic pain, David Butler and Lorimer Moseley (2013) advise that it is often unhelpful for patients to seek understanding of diagnostic labels as they are likely to be confronted with multiple explanations for their problem, which may worsen matters. In another popular text aimed at patients, The Way Out: A Revolutionary, Scientifically Proven Approach to Healing Chronic Pain, authors Alan Gordon and Alan Ziv (2021) likewise suggest that diagnostic labels are a barrier to overcoming pain, as they reinforce the perspective that the body, rather than the brain, is the originating source of the symptoms. The latter perspective, in an ironic inversion of a claim popular in activist circles that the pain is ‘not all in your head’, is presented as the critical shift that needs to take place to ensure chronic pain recovery. As such, ongoing debate over the pathophysiology of specific conditions, as well as the potential limitations of neuroplasticity, is negated while social and structural factors potentially contributing to the pain state are also minimised. This occurs in favour of simpler messaging that highlights a singular erroneous patient belief that can be successfully challenged through the promoted interventions, for example pain neuroscience education or, in Gordon and Ziv’s case, Pain Reprocessing Therapy. This, in turn, justifies an optimistic orientation of the clinical value of such approaches.

For example, my physiotherapist, who believed vulvodynia to have a psychogenic cause, would often downplay the need for pain medication, chirping that ‘the brain decides how much pain there’s going to be!’ The inference was that merely stating this would have significant pain-relieving effects. This is despite the pain at the time being severe and difficult to manage, to the extent that I feel I would have been unable to progress to physiotherapy without medication. Concerningly, Jemma Tosh and Krista Carson (2016) have argued that characterisations of people with genito-pelvic pain/penetration disorder – which collapses vulvodynia and vaginismus into a singular diagnostic category – as hypervigilant, neurotic catastrophisers works to construct their accounts of pain as exaggerated and irrational. The championing of ‘adaptive coping’ over facilitative responses in research on painful sex, they argue, encourages partners to ignore women’s pain and also risks clinicians interpreting refusal of sexual activity as non-compliance with treatment. While pain education is a vital component of managing various forms of chronic pain, this intervention (like most others) has not proven to be a magical panacea for them. The improvement in my chronic pain has been a slow and incremental process over many years, with more modest results than what is often touted by leading neuro enthusiasts. Therefore, pain science rhetoric, when allowed to outpace the current state of empirical evidence, has the capacity to further minimise these conditions and even, I would argue, to increase disablist views towards those living with them.

The anti-diagnosis logics advocated by some neuroscientists and psychologists discourage a disability identity in favour of a recovery identity or the pursuit of able-bodiedness – a state that may never arrive even with treatment. The implication that those who fail to get well are simply not equipped with an accurate understanding of pain has a range of political, social and ethical implications. These may include further social invalidation of these conditions and reduced institutional and economic supports. Such anti-diagnosis logics are also arguably paternalistic and individualistic, given that they impede patients’ ability to research their condition, make informed choices about their bodies and care and find community. While there are myriad problems with how various illnesses are constructed in academic discourse, labels are nevertheless important for social support, collective criticality and community-led advocacy, which takes various forms depending on the most pressing issues for that specific pain population.

Neoliberalism, affect and makeover narratives

While narrow neoliberal logics often shape the healthcare encounter for people with chronic pain, they do, of course, also shape everyday culture more broadly. My PMP’s directive that we become ‘bosses’ of our pain is echoed by analogies on health websites such as the New England Care System (Bisconti, 2023) and Psychology Today (Greenberg, 2013) that the brain is the ‘CEO’ of the body. Such language is consistent with the extension of market rationalities into all spheres of life and to the framing of the individual as a ‘capital-enhancing agent’ responsible for their own wellbeing (Rottenberg, 2018). The brain, then, becomes an organ that chronic pain patients can potentially master to cure their pain, with the directive to regulate emotion now reframed physiologically as a directive to regulate the nervous system. Meanwhile, the broader socioeconomic structure that gives rise to this analogy is cast as an external factor independent of individual control. It is worth noting here that market logics are also commonly used by research participants to describe themselves in terms of self-deficit. For example, Kaler’s (2006) participants described themselves as ‘defective’ and ‘bad bargains’ on the dating market, engaging in ‘false advertising’, their bodies offering something to men that they could not deliver. Lavó (2019) spoke about feeling as though the pain was their fault, leaving them in a ‘debt’ to their partners that they then attempted to pay back, for example by doing extra chores around the house. As such, there is a discursive similarity in the language offered to those in pain programmes and in women’s own accounts of gendered failure that shares a root logic in neoliberal constructions of gender.

Chronic pain discourse is likewise embedded in what Rosalind Gill and Akane Kanai (2018) term the ‘feeling rules’ of neoliberal capitalism and its logics of makeovers and personal transformation. While certain personality traits are implicated in poorer pain outcomes, so too are undesirable behaviours and affects with the goal to help transition the chronic pain patient towards improved coping mechanisms. Within commercialised pain management programmes such as chronic pain apps, it is common to enlist people with lived experience of chronic pain to share their stories of healing through promoted initiatives as evidence of their transformative potential. As such, to take part in a PMP of this type as a ‘before body’ is usually to be in the presence of the ‘after body’ – the individual who has transcended their bodily pain through the power of the mind.

In my experimentation with chronic pain apps like Curable, I was, in fact, reminded of Brenda Weber’s (2009) arguments on reality makeover television. Like makeover television, chronic pain discourse is at times quasi-evangelical in tone. One of the reasons for this, I argue, is that independent, empirical evidence that chronic pain is ‘curable’ across the broad range of conditions for which such commodities are marketed is lacking. For example, in the foreword to Gordon and Ziv’s The Way Out, Professor of Neuroscience Tor Wager cautions that we do not know for ‘which kinds of pain and for which kinds of people’ such results are possible. Yet, he also narrates his story of becoming a ‘believer’ in Gordon’s pain-curing methods and closes the foreword by referring to Swami Prabhavananda and Christopher Isherwood’s book How to Know God, encouraging readers to have faith and provisional belief in the book’s ideas. Given that a key purported barrier to healing is the false belief that pain is correlated with tissue damage, a significant effort within these programmes is levelled at converting the chronic pain patient to the new belief that this correlation is poor, which, alongside techniques like meditation and journalling, ideally eliminates chronic pain. Those who experience significant pain relief through this process form part of an in-group of believers who have placed their trust in the expert and ‘spread the word’ by carrying out important marketing for the product. In contrast, an out-group of sceptics who failed to suspend their disbelief and so do not reap the rewards is formed. Like makeover television, psychosocial (and neurobiological) barriers and solutions to healing are over-simplified in the service of producing an able-bodied (as opposed to hyper-feminine) spectacle.

My pain management programme, too, contained a makeover narrative of sorts, albeit with less extreme transformations than one might find on Curable, given that the PMP was promoted as improving our quality of life rather than curing chronic pain. While some of our sessions were run by clinicians, others were run by peer supporters, who had participated as patients in a previous version of the programme and presumably had been deemed particularly successful participants. The role of these supporters was not only to facilitate trust between clinicians and the group but also to act as change champions of a kind, demonstrating that improvements in chronic pain were possible with the right lifestyle interventions and attitude.

Versions of personal transformations were also shared with us in weekly pre-recorded videos, in which people with chronic pain would narrate their journeys in relation to the weekly topic. This group was carefully curated, diverse in gender, age, ethnicity and type of pain, although all were still living with significant impairment. Rare was it, however, to hear anyone discuss political, environmental or even social transformations that improved their quality of life with pain, as their stories were limited to topics such as sleep, exercise and stress. This is despite issues being raised within our own group that might have lent themselves to a rights-based discussion. While it is now considered important to include people with ‘lived experience’ in PMP content and perhaps even design, I found myself questioning whether inclusion is limited to endorsement for, as opposed to challenges to, the preferred narrative. This emphasis within chronic pain discourse on transforming the self to meet goals is also an emphasis on transitioning the patient’s outlook from one of negative to positive affect. Positive and negative affects within chronic pain research are typically measured quantitatively, with positive affect associated with prosocial behaviour and mitigation of pain’s harmful effects (Finan and Garland, 2015). Psychological interventions such as CBT and acceptance and commitment therapy (ACT), therefore, aim to promote positive reappraisal of events, psychological flexibility and engagement in valued activities in the service of building resilience, which is in turn associated with reduced pain catastrophising (Finan and Garland, 2015). This discourse has perhaps accelerated in accordance with scientific optimism over the purported benefits of neuroplasticity; however, when positive thinking imperatives are coupled with the ‘radical abstraction’ of the individual from material and social context, as is common, it also bolsters the authority of neoliberal logics (Adams et al., 2019). Gordon and Ziv’s book, The Way Out, which opens with a narrative about the televised cure of a chronic pain patient on the US talk show The Doctors, a spinoff of Dr Phil (essentially a makeover on reality television), is an indicative text in this regard. Gordon’s chronic pain intervention, pain reprocessing therapy (PRT), involves a technique called Positive Affect Induction, which involves therapists lightening the treatment atmosphere through humour and encouraging patients to cultivate positive attitudes towards pain sensations. PRT is incorporated, too, in Curable, which contains a definition of the biopsychosocial approach that illustrates this invocation, and then disappearance of the social.

The ‘biopsychosocial’ approach to pain has shown significant results across clinical studies. Curable’s unique design translates this approach for people, to help address pain from multiple angles–physical, emotional, and psychological – Curable, n.d. (Curable’s emphasis)

In its focus on teaching positivity and reframing negative life experiences through depoliticised forms of work such as journalling, chronic pain discourse has some proximity to what Edgar Cabanas and Illouz (2019) term the science of happiness, in which positive affect – and here, by extension, chronic pain itself – is framed as a choice, minimising the role of circumstance. Indeed, the experience of reading the quantitative literature on vulvodynia, which is frequently deficit-based in approach, has been one of feeling reduced to a set of negative psychological traits with comparatively little sustained attention paid to the sociocultural drivers of pain and negative affect. This is in contrast to much of the qualitative literature, in which participants’ stories are indicative of experiential and affective complexity, revealing strengths, and more importantly, critical capacities and ideas that go beyond simplistic valorisations of resilience or positivity. It is this type of work that better paves the way for solidarity in refusing to ‘meet up’ over happiness, so that we may reveal the causes and structures of our unhappiness (Ahmed, 2010).

There are further dangers of selectivity in identifying barriers to overcoming chronic pain that are disproportionately focused on personality traits and behaviours, or in the failure to acknowledge limitations in medical understanding of under-researched conditions like vulvodynia. One is that this may produce the temptation for ‘victim blaming’ (Hunt, 2024), where those ascribing to the biopsychosocial model blame treatment failures or challenges on perceived personality factors rather than the limitations of the interventions themselves. According to Curable’s own statistics, the programme fails to achieve a curative result, or even a significant improvement in pain, 79 percent of the time (Curable, 2025). Yet, in the Curable Team’s (n.d.) blog post ‘9 most common healing obstacles’, all nine are related to individual behaviours and attitudes, including ‘letting fear into the driver’s seat’, ‘trying to be the BEST at healing’, ‘failing to examine your past’ and even ‘unconsciously hanging on the sunny side of pain’ (secondary gain). Such logics leave little room for considerations of treatment failure beyond supposed patient deficits, as the programme design ensures that the treatments are never the problem. Such strategies are, of course, commercial, given that the post ends by promoting the Curable Group’s 12-week ‘bootcamp’ as a means of overcoming the nine barriers, which is an extra cost on top of the app subscription.

Perceived injustice as a mental construct

Prominent within academic literature and other forms of patient storytelling on vulvodynia are experiences of multiple and intersecting injustices. These include diagnostic delays, pain invalidation, sexual inequality, gendered and racialised stereotyping and bias and the neoliberalisation of healthcare, among others. It is noteworthy, then, that pain researchers have introduced the Injustice Experience Questionnaire (IEQ) to quantitatively measure levels of ‘perceived injustice’ to determine its impact on pain outcomes, patient behaviours and association with other variables such as catastrophising and depression (Sullivan et al., 2008). Originally focused on musculoskeletal injury (though later applied to chronic pain conditions, including vulvodynia), the foundational literature on perceived injustice (PI) focuses on the perception of injustice as the central issue rather than injustice itself. Because PI is associated with poor pain outcomes and occupational disability, scenarios in which the patient fixates on injustice are therefore imagined as antisocial and untenable. Drawing on the philosopher Anselm de Canterbury, Sullivan et al. (2012) argue that perceptions of injustice might lead the individual to harbour revenge motives and demand retribution. As such, the authors conclude, ‘disability behaviour might be intentionally maintained to seek adequate retribution for losses’ (p. 486). Likewise, in their focus group with clinical psychologists, Sullivan et al. (2008) note the belief that PI distracted patients’ attentions from engaging in the rehabilitative process. Proposed therapeutic interventions aimed at alleviating PI, therefore, include anger management, forgiveness and mindfulness (Sullivan et al., 2012).

Following the creation of this psychometric test, research teams measuring PI have occasionally acknowledged that perceptions of injustice might be to some degree justified, or even a response to the reality of systemic inequities. This acknowledgement, however, is too often brief, while individualistic solutions of the type that clinicians can select, administer and monitor are favoured as solutions to this complex problem. The two attempts at measuring PI in vulvodynia patients – Pâquet et al.’s (2016) investigation of PI’s association with sexual and psychological distress in couples coping with genito-pelvic pain/penetration disorder (GPPD) and Chisari et al.’s (2022) study of the role of PI, psychological flexibility and body image in vulvodynia outcomes – are examples of this type of research. Both research teams acknowledge that misdiagnosis and pain invalidation may play a role in patients’ perceptions of injustice, with Chisari et al. also considering the threat that provoked vestibulodynia poses to gender identity. They then implement the IEQ, which restricts injustice experience to agreement or disagreement with a set of 12 statements, for example ‘most people don’t understand how serious my condition is’, ‘nothing will ever make up for what I have gone through’, and ‘I am troubled by fears that I may never achieve my dreams’. While both studies inadvertently raise an interesting question as to how the therapeutic alliance might be threatened if the health system itself, and potentially by extension the clinician, becomes the object of PI, they nevertheless also exclusively focus on ACT as the optimal psychological intervention to mitigate PI. This again places the burden of change exclusively on the patient and fails to critically engage with the injustice itself.

The design of the IEQ and its initially preferred application and interpretation, it might be argued, relies on the fallacy of a just world in the first place. While healthcare researchers may draw divergent conclusions from the results of psychometric testing – and the IEQ has occasionally been interpreted productively to examine racialised disparities in healthcare – it does not readily allow for analysis of the impacts of structural injustice on human psychology in the manner that measures of epistemic injustice do. It is also a reminder that not only does mainstream psychology frequently fail to seriously consider structural contributors and solutions to the issues it identifies, but it can also work to pathologise critical awareness as a sign of maladaptive psychology or an indicator of one’s ‘sickness’. Firmly on the radar of feminist cultural studies, then, should not only be how we do critique, but who gets to be a critic? What are the conditions, and for which ‘kinds of people’ will critique be accepted as critique at all? When is critique likely to be interpreted as something else entirely, to be dismissed, psychologised and pathologised?

My critique, as exercised in the PMP, was not readily accepted as such by clinicians in the way it might have been had I raised similar points in an academic setting. From the moment a patient enters a pain clinic, clinicians are looking to analyse and interpret the reasons why that person is unable to manage their pain, which, in my experience, clearly includes looking for signs of an irrational outlook on the world. Other than the mobilisation of familiar discourses of health as personal responsibility and the construction of social structures as static and immobile, it was also thought by one of the clinicians that I might have misunderstood the course material. At least, this is how I would interpret a meeting in which I was asked to narrate my understanding of pain neuroscience content so the clinician could check my knowledge, after which I was given a brief lesson on how to read and interpret academic research.

Conclusion

In conclusion, I contend that there is a line of thinking within scholarly research, health intervention practice and commodity marketing that not only oversimplifies and minimises the role of structural factors in the experience of vulvodynia (and other chronic pain conditions) but can also operate to police and pathologise ‘perceptions’ of injustice as well as the adoption of a disability identity. This occurs in several ways. It may take the form of failure to consider structural influences at all in research and/or clinical practice or in the brief acknowledgement of structural factors prior to a dominant focus on psychological solutions. The latter typically assumes that ‘bad feeling’ is due to maladaptive coping or failure to exercise critical or flexible thinking rather than critical awareness of the structural inequities that shape our world. Furthermore, as in my PMP experience, there may be an insistence that structural factors informing the relational aspects of pain are immovable, leaving room for personal transformation only. It also may take the form of questioning diagnosis as imposing a psychological barrier to able-bodiedness, exaggerating claims of likely treatment effects, or even implying that those with chronic pain may desire (or mobilise) a disability state for selfish or nefarious reasons. These lines of thinking do not characterise the literature on vulvodynia and chronic pain as a whole, as there is important feminist work that challenges them. The problem, rather, is that this work often occurs in parallel to mainstream approaches in psychology and neuroscience and is not adequately integrated into them. We might say, then, that structural competency (Metzl and Hansen, 2014) in research, practice and education is inconsistent and optional.

Currently, patient-led organisations like Tight Lipped and the National Vulvodynia Association importantly advocate for more research funding and timely, accessible and improved care for diverse groups of people with vulvovaginal pain. Organisations like Tight Lipped, for example, lobby for the implementation of improved training for OB/GYNS in pelvic pain conditions in the United States and advocate for storytelling as a means of normalising discussion around these issues and expanding cultural scripts around sex and intimacy. I am arguing here that we should also advocate for a structurally competent research and practice. As Metzl and Hansen (2014) explain, this involves recognising that disease, health inequity, stigma and/or bias are produced through social structures – and indeed often structural violence – and as such also have structural solutions rather than exclusively biomedical or psychological ones. Such training would involve a partnership between medical education and the humanities and social sciences. As Metzl and Hansen (2014) caution, this should encourage clinician humility in relation to these complex issues rather than mastery of them. The authors also suggest that medical trainees study forms of community activism protesting structural health disparities as well as community-based interventions. It is also critical that vulvovaginal pain – and disability more broadly – is on the agenda for feminist cultural studies. Despite heavily publicised reporting on inequities in women’s health and the widespread dissatisfaction with care, the medical profession still tends to position itself as the foremost authority in this space and its most rightful knowledge producer. Psychological science is still frequently treated as a neutral, objective good unaligned with power, and this needs to be challenged through alternative forms of knowledge creation.

Regarding pain management programmes, I argue that structural and social factors shaping pain experience should be incorporated into programme design and utilised as discussion points, allowing us to learn from and strategise with one another. There needs to be consideration, as per Mike Oliver’s (1983) influential social model of disability, of how society disables. This need not replace content on pain education, sleep, relaxation or exercise, as I would question assumptions that challenging injustice and self-care practices are mutually exclusive. Nevertheless, it is interesting that while the brain is constructed as extraordinarily plastic, the social context in which the brain is shaped is imagined as quite the opposite. Yet surely social structures can adapt and change, and this does not occur independently of human endeavour. In fact, I would argue that structural change is utterly essential for improving the lives of people with vulvodynia.

In the PMP, we played a game called ‘magical thinking’ designed to counter a sense of hopelessness that some living with chronic pain may feel. In this game, we were asked to dream about chronic pain – to produce activities or goals that we were looking forward to or wanted to achieve. I would like to suggest a variation of this game for people with vulvodynia or other forms of pelvic pain that involves dreaming of a more just world. The game can be played in a micro form. We may consider the adaptations and changes we already make within a ‘habitus of ableism’ in the spirit of what Arseli Dokumaci (2023) terms activist affordances. But we may also practice dreaming on a larger scale. What does a political or economic system more friendly to those with chronic pain look like? How would we describe a supportive and flexible workplace? What makes for a supportive partner or healthy relationship? Or a supportive peer group? What does a world that supports people with vulvodynia or other forms of pelvic pain look like? How do we build new worlds and alternative models of care?