Toward the emancipation of “medically unexplained” and energy-limiting conditions: Contesting and reimagining psy through the lens of feminist disability studies

Abstract

Indictment of hegemonic psy construction of the “ideal” subject, and its marginalisation of the Other, is common to both feminism and (critical, feminist) disability studies. However, feminist literature largely lacks both an appreciation of the gendered, intersectional nature of disability as constituted and propagated by psy, and an exploration of how integrating disability as a category of analysis can strengthen critical feminist endeavours to transform psy. This article seeks to address this gap, espousing a feminist disability studies lens and taking as its subject energy-limiting chronic illnesses that are socially and clinically othered, notably via a strategic positioning of these illnesses as medically unexplained and recoverable through compliance with psy knowledge regimes. After discussing how power-laden gendered, dis/abled, and more fully intersectional constructions of the idealised subject, bolstered by psy–corporate–state agendas relating to welfare reform, have oppressively shaped dominant representations and practices in this arena, I consider how psy (chiefly, psychotherapy) might benefit from integrating thinking from within feminist disability studies. I conclude that feminist disability studies can help transform psy in an emancipatory direction through reimagining disability in a socioculturally and biopolitically cognisant, embodied, and maximally inclusive manner. The case of “medically unexplained” and energy-limiting chronic illness exemplifies this assertion.

Keywords

energy-limiting conditions Global North government of disability intersectionality medically unexplained symptoms psy complex

Locating disability in feminist critiques of psy

Feminism, particularly feminist psychology, bears a long tradition of critiquing the practices and discourse of the psy disciplines, understood here as psychology, psychiatry, and psychotherapy (Marecek & Gavey, 2013; Wilkinson et al., 1991). Of particular pertinence to this article, feminist literature demonstrates how the psy complex (the interplay between psy's “expert” knowledge regimes and those who are interpellated into and governed by these regimes) constitutes a “self” or subject whose ostensible universal nature derives from its oppressed Other (Rose, 1998), where oppression is acknowledged as gendered, racialised, sexed, classed, and sexualised (Fine, 2011). For example, traits tied to subjectivities highly prized by psy within Global North societies—notably rationality, self-sufficiency (independence), productivity, and (self-)control—are constituted through White, male, middle-class, cisgender, and heterosexual norms (Blackman, 1996; Cermele et al., 2001; Marecek & Gavey, 2013; Spandler & Carr, 2021). Dominant psy constructions of the Other are tightly aligned with irrationality, dependency, laziness, and unpredictability, coalescing in the social imaginary as social deviancy and mental pathology. Relatedly, feminist critique reveals a hierarchy of evidence in Western hegemonic science (including psy) constructed along the lines of gender, sex, sexuality, class, ethnicity, and race (Fine, 2011), whereby claims of objectivity, value neutrality, and normalcy constitute the collective subjectivity, values, and norms of multiply privileged men (Wilkinson et al., 1991). Finally, psy's individualising tendencies have come under sustained feminist criticism for overlooking this “matrix of domination” (Hill Collins, 1990), thus de-politicising and responsibilising suffering (Marecek & Lafrance, 2021; Wilkinson et al., 1991).

Less recognised within feminist psychology literature is that psy's normative practices and attendant exclusions extend to disability. Therefore, whilst recognising the importance of multiple intersecting systems of power relations (hierarchical social relations) in psy's construction of the idealised subject and marginalisation of the Other (see Hill Collins, 1990), this article foregrounds disability as a historically underrepresented concern within feminism (Garland-Thomson, 2002; Morris, 1992; Thomas, 1999; Wendell, 1996). Certainly, the inevitability that many people subject to (and object of) psy's disciplinary knowledge regimes identify or are positioned as disabled (Spandler et al., 2015) has been largely overlooked in feminist theory and practice (but see Prilleltensky, 1996, 2009).

Within feminist strands of critical disability studies, the historical coupling of stigmatising representations of femininity and disability, embedded within intersecting power systems such as patriarchy, neoliberal capitalism, and ableism, is acknowledged as central to the (re)production of pathologising psy discourse (Goodley, 2017). Ableism is defined as “a system of beliefs that privileges normate notions of the body/mind and ability that are culturally constructed and views disabled people as inferior and lacking” (Bê, 2020, p. 421) and “the exclusion of many people by a cultural imaginary associated with self-sufficiency, autonomy and independence” (Goodley et al., 2019, p. 986). The “values” celebrated by ableism, coalescing around privileged notions of body/mind normalcy, thus mirror those prized by neoliberal capitalism, patriarchy, Whiteness, and hetero- and cis-normativity, engendering the term “neoliberal-ableism” and recognition of the intersectional nature of disability (Garland-Thomson, 2002; Goodley, 2017; Goodley et al., 2019). Accordingly, the psy complex has been critiqued by disability studies scholars, disabled activists, and allies in a near-parallel process to feminist endeavours. Inter alia, psy's pretensions to value neutrality, objectivity, and apoliticality; its framing of difference as deviance; and its individualisation, pathologisation, and responsibilisation of socially mediated suffering have received critical attention (e.g., Goodley, 2017; Goodley & Lawthom, 2006; Spandler et al., 2015). Despite such convergence, feminist literature largely lacks both an appreciation of the gendered, intersectional nature of disability as constituted and propagated by mainstream psy practices and discourse, and an exploration of how integrating disability can add value to critical feminist contestations of psy (but see Prilleltensky, 1996, 2009). In writing this article, I seek to address this important field of inquiry, espousing thinking from feminist disability studies and taking as my focus chronic illness that is positioned as “medically unexplained” or socially and clinically “contested.”

In what follows, I sketch the contours of the concept of illnesses framed as medically unexplained or otherwise contested, highlighting the urgent need for a critical feminist approach to psy practices in this arena. Next, I position myself theoretically and conceptually toward the subject matter, highlighting relevant motifs from within feminist disability studies that are also central to feminism: (a) the importance of valorising marginalised lives (experiences, knowledges, and identities), (b) recognition that the personal and political are enmeshed. Foregrounding these motifs, I then seek to elucidate how gendered, dis/abled, and more fully intersectional constructions of the idealised citizen-subject in Westernised societies—entangled with the disciplinary apparatus of a “psy–corporate–state complex” that maintains a stronghold over (bio)psychosocial theorising (Hunt, 2023b)—have shaped dominant representations and practice in the arena of contested illness. In doing so, I hope to offer a socioculturally and biopolitically situated understanding of contested illness, and to demonstrate the importance of including an intersectional understanding of disability in feminist praxis. From here, I move to consider how this understanding may allow us to reimagine practice within the psy disciplines, notably within psychotherapy, in more socially just and inclusive ways.

Contested illness

Chronic illnesses positioned as medically unexplained or otherwise contested are referred to within psy disciplines as “medically unexplained symptoms,” “persistent physical symptoms,” and “functional somatic symptoms” (or syndromes) among other labels. Although there is some variation as to how these labels are interpreted, they typically describe somatic complaints allegedly lacking demonstrable physical pathology or not fully explained by physical causes, thus positioned as psychosomatic or psychogenic (see Hale, 2018; Hale et al., 2021; Kennedy, 2012). Throughout, I refer to these conditions simply as contested illnesses, whilst recognising that they are also politically exploited, socially stigmatised, and culturally disavowed. Contested illnesses are beset with troubling histories of medical and social stigmatisation, with well-documented disbelief, dismissal, blame, psychologisation, and negative stereotyping in healthcare and broader social spheres (Barshay, 1994; Bê, 2016; Blease et al., 2017; Caplan, 2001; Hale, 2018; Hale et al., 2021). In the UK National Health Service (NHS), such illnesses include irritable bowel syndrome, fibromyalgia, chronic pain, multiple chemical sensitivity, and, of particular ongoing debate, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS; Joint Commissioning Panel for Mental Health [JCPMH], 2017).

Contested illnesses tend to occupy a site of paradigm conflict between biomedical and (bio)psychosocial models and associated management approaches (Kennedy, 2012; Maes & Twisk, 2010). In these cases, the dominant biopsychosocial approach downplays biological influences and foregrounds (individualistic) psychosocial influences, leading to the widely debated construction of such illnesses as psychosomatic entities, and engendering the term “(bio)psychosocial” (Maes & Twisk, 2010). Widely promoted psychosocial “treatments” for ME/CFS, graded exercise and cognitive–behavioural therapy, are increasingly acknowledged as lacking in evidence base and risking harm to service-users (see Hughes et al., 2023). Accordingly, both the U.S. Centers for Disease Control and Prevention (CDC) and the UK National Institute for Health and Care Excellence (NICE) agree that there is no effective approved treatment for ME/CFS, with NICE recently withdrawing preexisting recommendations for these therapies (Hughes et al., 2023; O’Leary, 2018). Nevertheless, (bio)psychosocial proponents of ME/CFS and other contested illnesses persist in defending their approach (White et al., 2023). Of particular topical importance, subgroups of the long Covid umbrella are clinically and socially positioned in parallel to contested illnesses, with risk of parallel harms (Hughes et al., 2023; Hunt, 2022).

More recently, and congruent with critical feminist analysis, I have suggested that scholarly preoccupation with “(bio)psychosocial versus biomedical” paradigm conflicts through a hegemonic scientific lens has resulted in the sociocultural, biopolitical, and intersectional context of (bio)psychosocial ascendancy being largely overlooked (Hunt, 2024c). This is important since, as this article will demonstrate, this context is central to understanding the persistence of victim blaming (individualisation and responsibilisation of suffering) and other manifestations of disability denial in the contested illness arena, in which psy plays a central role (Hunt, 2023a, 2024a). Also consistent with critical feminism, recent research from within the UK vis-à-vis “energy impairment” and “energy-limiting conditions” (Evans et al., 2023; Hale, 2018; Hale et al., 2020; Hale et al., 2021) has highlighted the gendered and dis/abled nature of dismissal, blame, psychologisation, and negative stereotyping of people living with these conditions. Energy-limiting conditions, a concept developed by disabled people’s organisation Chronic Illness Inclusion, delineate a group of diagnoses more prevalent among women, including but extending beyond medically contested illnesses such as ME/CFS and long Covid, that share energy impairment as a central experience and substrate of disablism or disability discrimination (Hale et al., 2021). This disablism manifests largely as societal disbelief and positioning of energy-limiting conditions as “undeserving” of disability identity: such conditions defy prevalent stereotypes of impairment owing to their fluctuating nature (Hale et al., 2020). Despite being poorly recognised, energy-limiting conditions map closely onto the UK Office for National Statistics’ impairment category of “stamina/breathing/fatigue,” with recent data suggesting that such impairment impacts 1 in 3 disabled people of working age (Hale, 2021).

When further situated within the current climate of austerity and cost-of-living crises within the UK and beyond, and in particular the UK government's current plans to further demolish the welfare state (see Hunt, 2024b), the precarity of people living with purported undeserving impairment is further underscored. It has been contended that people with energy-limiting conditions, in particular those with highly contested illnesses, are first in line to be socially and clinically reconstituted as “partially disabled” or “not really disabled” (Soldatic, 2020, as cited in Hunt, 2024b), and that psy plays an important role in this reconstitution within the UK and wider Global North (Hunt, 2022, 2024c). As will be discussed, power systems beyond gender, such as those pertaining to class, ethnicity, race, and sexuality, are co-constitutive with disability, and this extends to the contested illness arena (Evans et al., 2023). The resultant discriminatory and exclusionary landscapes indicate that psy practice and policy must evolve in a socially just, disability-affirmative (as opposed to disability-denying), and inclusive direction as a matter of urgency.

Theoretical and conceptual grounding

This article is underpinned with standpoint feminist epistemology (e.g., Harding, 1992; Hill Collins, 1990): I draw from critical engagement with psy-mediated knowledge regimes and systems of power, alongside my lived experiences of marginalisation within these systems as a person with various contested diagnoses. I share the standpoint feminist assertion that marginalised perspectives, combined with critical engagement, facilitate “strong objectivity,” a less partial understanding of the social order than that gained through striving for dominant notions of objectivity (Harding, 1992). The article is further shaped by my positionality as a White, cisgender, working-class, disabled, nonimmigrant woman in the Global North (UK), and having navigated psy as both service-user and practitioner in counselling and psychotherapy.

To further strong objectivity, I draw upon feminist disability studies, an interdisciplinary field that sits at the intersection of feminist scholarship and disability studies (e.g., see Bê, 2020; Garland-Thomson, 2002). Feminist disability studies is rooted in growing dissatisfaction among disabled feminists, who demonstrated how the (largely, nondisabled) women's and (predominantly, male) disability movements had excluded the knowledge, concerns, and experiences of disabled women (Fine & Asch, 1988; Morris, 1992; Thomas, 1999; Wendell, 1989, 1996). Concurrently, these scholars demonstrated that impairment and disability or disablism (a form of social oppression imposed upon people with impairments) disproportionately impact women and other minoritised groups. Of particular relevance to this article, academics and scholar-activists aligned with feminist disability studies have carved space for chronic illness to be acknowledged as a form of impairment and thus substrate for disability or disablism (Bê, 2020; Evans et al., 2023; Hale et al., 2021; Thomas, 1999; Wendell, 1996, 2001). Relatedly, these theorists have foregrounded a more fully embodied understanding of disability, integrating the often painful lived realities of chronic illness and the body/mind. The theoretical and conceptual wealth offered by feminist disability studies renders a full discussion of pertinent motifs impossible within space constraints. Nevertheless, I foreground two themes as particularly pertinent to what follows: (a) the importance of valorising marginalised lives (experiences, identities, and knowledges); and (b) the recognition that the personal and political are enmeshed. Subsumed within these themes are key feminist disability concerns, as will next be unpacked: the body or body/mind, power relations, identity and knowledge production, construction of the idealised subject and othering, and disability rights (Bê, 2020; Garland-Thomson, 2002; Morris, 1992; Thomas, 1999; Tremain, 2001; Wendell, 1996).

Much has been written on the politics of knowledge production and identity within the feminist and disability movements (e.g., Fine & Asch, 1988; Hill Collins, 1990; Thomas, 1999). Some feminist disability studies scholars have followed Black feminist thought (e.g., Hill Collins, 1990) in adopting standpoint feminism and in arguing that the lived experiences and testimonies of disabled and otherwise minoritised women and gender nonconforming persons, historically dismissed and discredited, must be honoured if the ostensible social justice ethos of feminist and disability movements is to be fully inclusive (e.g., Bê, 2020; Thomas, 1999; Wendell, 1996). Inspired by feminist disability standpoint(s), I draw upon the work of disabled women and other minoritised scholar-activists throughout. Intersectional power/knowledge hierarchies, sustained by the oppression of particular identities (subjectivities) and body/minds, extend to the contested illness arena, notably but not limited to healthcare fora (Bê, 2020; Hale, 2018; Hunt, 2024a; Wendell, 1996); these hierarchies will be explored in the following section.

The feminist assertion that the personal and political are inextricably linked, highly pertinent to what follows, can be enriched through the feminist disability studies concepts of psycho-emotional disablism (Reeve, 2006; Thomas, 1999) and the Foucauldian-inspired government of disability (Tremain, 2001, 2015). Applied in complementarity, I suggest that these two frameworks shed light onto the workings and consequences of oppressive power relations in the contested illness arena. Psy's normalising power/knowledge regimes are tightly tied to “dividing practices” that construct deserving/undeserving impairment, disabled/not really disabled persons, and ensuing subjectification (Rose, 1998; Tremain, 2001, 2015); this also applies to contested illness. Whilst the aforementioned psy complex is highly relevant in this regard, the government of disability (Tremain, 2001, 2015) adds further context. Governing of disabled subjects proceeds via the related concept of disability as a disciplinary apparatus (Tremain, 2001, 2015): “a thoroughly heterogeneous ensemble consisting of discourses, institutions, architectural forms, regulatory decisions, laws, administrative measures, scientific statements” (Foucault, 1980, p. 194) that normalises subjects’ conduct and shapes embodied subjectivities in pursuit of the idealised, multiply privileged citizen-subject. The power relations implicated in this form of government are typically understood through a lens of biopower or biopolitics: “the endeavor to rationalize the problems that the phenomena characteristic of a group of living human beings, when constituted as a population, pose to governmental practice” (Tremain, 2001, p. 618). My own research has drawn from Tremain (2001, 2015) in suggesting that (bio)psychosocial hegemony is tightly tied to a disciplinary apparatus of neoliberal–ableist governmentality: as will be explicated in what follows, people with contested illness have been constituted as a sociocultural and economic “problem” for neoliberal governmental practice, giving rise to a biopolitics embedded in welfare reform and the activities of what I have termed a psy–corporate–state complex (Hunt, 2023b, 2024c).

Simply put, the government of disability, in which psy plays a central role, represents a complex of power/knowledge relations, institutions, discourses, and technologies that enable and constrain possibilities for conduct, embodied subjectivity, and legitimised knowledge according to multiply privileged social norms. In the contested illness space, conduct and subjectivity are heavily shaped through variations of cognitive–behavioural and graded exercise therapies, which can be understood as technologies of (bio)power or disciplinary power through a feminist disability and Foucauldian lens (see Hunt, 2023a). The concept of psycho-emotional disablism (Reeve, 2006; Thomas, 1999) can then be used to theorise and further elucidate the harms wrought by psy discourse, practices, and policy (Hunt, 2024a). Psycho-emotional disablism acknowledges the socially mediated erosion of the psycho-emotional health of disabled people, operating through the invalidating impact of sociostructural barriers (e.g., hostile healthcare and benefits systems and associated power structures), interactions with others (e.g., healthcare professionals), and internalised ableism (Reeve, 2006; Thomas, 1999). Understood as internalised and embodied, (dis)ableism can strike at the core of personhood, not only restricting activities but also eroding ontological security (Reeve, 2006; Thomas, 1999). Thus, ableism and psycho-emotional disablism entwine with the government of disability in shaping embodied subjectivity and conduct according to oppressive norms.

At the heart of these motifs and associated concepts are the power-laden relational aspects and consequences of ableism and disablism, a key concern of feminist disability studies that should be of great interest to feminism. These motifs and concepts are now revisited through a socioculturally, biopolitically situated account of contested illness, applying an intersectional lens whilst foregrounding gender and disability.

The government of nonnormate body/minds

Psy-mediated power/knowledge regimes in the contested illness arena have been acknowledged as highly gendered. For example, dominant psy constructions of medically unexplained symptoms have been traced to hysteria, a gendered diagnosis purportedly indicative of women's emotional lability (Kennedy, 2012; O’Leary, 2018). Contemporary clinical psychosocial narratives vis-à-vis this predominantly female group as captured in research—that of self-indulgent, demanding, and complaining attention-seekers encouraged by oversolicitous others (Blease et al., 2017; Hunt, 2023b; Kennedy, 2012)—are redolent of the attitude of the near-exclusively male psy professions toward putative “hysterics” in the 1800s and early 1900s (Showalter, 1987). In parallel, people with medically unexplained symptoms have been clinically framed as “heart-sink,” a term historically applied in framing (predominantly women) service-users with alleged hysterical traits (Kennedy, 2012). Parallel dynamics are noted within the wider arena of energy-limiting conditions (Evans et al., 2023; Hale, 2018; Hale et al., 2020), with pronounced dynamics in the case of ME/CFS.

Within the ME/CFS community, it is well known that what began as a World Health Organization designated neurological condition (under the nomenclature ME) was subsequently redefined by two male psychiatrists as hysteria, with the reasoning that most affected patients were women (Kennedy, 2012; Wendell, 1996). Moreover, psy discourse has depicted ME/CFS as a form of modern-day neurasthenia (Richman et al., 2000; Wessely, 1990), a construct reinforcing the trope of emotionally labile and morally and intellectually deficient women (Jung, 2021; Marecek & Lafrance, 2021). Accordingly, the unevidenced suggestion in (bio)psychosocial discourse that people with contested illness, most notably ME/CFS, “gain” from being ill through obtaining attention, financial support, or relief from work (see Hunt, 2023a; Kennedy, 2012) mirrors psy narratives constructed around alleged hysterical–neurasthenic women (Showalter, 1987). Gendered power/knowledge regimes extend to alleged “treatments”: cognitive–behavioural and graded exercise therapy can be understood as informed by hegemonic masculine ideals, including emotional stoicism, rationality, and self-sufficiency (Hurst & Genest, 1995). Relatedly, feminist scholars have recognised that narratives about medically unexplained “fatigue” (in the case of ME/CFS and long Covid, postexertional malaise is a more suitable term) are highly gendered, with implicit suggestion that individuals should “pull themselves together” and “act like a man” (Lian & Robson, 2017).

In near-parallel to the above feminist critiques, psychosocial discourse and practice vis-à-vis contested illness have been subject to sustained criticism by disabled activists and disability studies scholars for constituting this group as Other of the celebrated abled subject (e.g., Clifford, 2020; Hunt, 2024a; Jolly, 2012; Kennedy, 2012; Stewart, 2016). Disabled scholar-activists have long contended that the ascendancy of (bio)psychosocial practices and othering of disabled people can be best understood through the lens of a neoliberal–ableist project of retrenchment across health and welfare sectors, discernible in successive UK welfare reforms and increasing privatisation (Clifford, 2020; Jolly, 2012; Stewart, 2016). Particularly pertinent in the case of illness positioned as medically unexplained (and notably, ME/CFS), it has been argued that a network of alliances implicating academia (largely, psychiatry), the UK government, and disability insurance industry with media complicity—a psy–corporate–state complex (Hunt, 2023b)—have played a central role in reconstructing (bio)medical conditions as undeserving (self-imposed, exaggerated, or feigned) psychosocial phenomena (e.g., Hunt, 2022; Kennedy, 2012; Rutherford, 2007). At the centre of this network is a variant of (bio)psychosocial model espoused by U.S. insurance giant Unum in countering insurance claims, later adopted by the UK government and assimilated into clinical practice with psy support (Jolly, 2012; Rutherford, 2007; Stewart, 2016).

Critical inquiry has uncovered how this reconstruction of health conditions as undeserving sought to counter a trend of increasing claims for state sickness benefits and private income protection from the late 1970s, notably from people with conditions lacking established biomarkers, such as ME/CFS. Exploiting the “subjective” nature of such conditions, and framing them as recoverable via psychosocial therapies, would facilitate exemptions from state benefits and private insurance claims, seek to reduce medical care and biomedical research costs, and coerce disabled people into the labour market (Rutherford, 2007; Stewart, 2016). This (bio)political project has deprived disabled people of state support, appropriate biomedical care, and social accommodations, wreaking multifarious hams (Clifford, 2020; Stewart, 2016). More recently, these agendas have been applied in discussing the trajectory of long Covid and other energy-limiting conditions (Hunt, 2022; Hunt, 2024b). In parallel to feminist critiques of the gendered nature of cognitive–behavioural and graded exercise therapy, these technologies of power have been problematised within disability studies literature as informed by neoliberal–ableist ideals (see Hunt, 2024a).

Whilst gendered and dis/abled power relations are recognised within the contested illness arena, these relations have historically not been considered in intersection. A notable exception is the work of feminist disability studies scholar and Canadian woman with ME/CFS, Susan Wendell (1989, 1996, 2001). Wendell recognised that power/knowledge hierarchies within healthcare are both dis/abled and gendered, using the term “epistemic invalidation” to describe systematic disbelief toward the embodied experiences of people (disproportionately, women) with chronic illness (Wendell, 1996). In near-parallel to research on energy-limiting conditions (e.g., Evans et al., 2023; Hale et al., 2020), Wendell recognised that chronic illness typically defies prevalent impairment and disability stereotypes, those Wendell described as “healthy disabled and permanently and predictably impaired” (Wendell, 2001, p. 21), creating a gendered (dis)ablism depriving people of disabled identity and resulting in “social abandonment” (denial of social protections and accommodations) that furthers marginalisation (Wendell, 1996). Epistemic invalidation and social abandonment, as manifestations of oppressive power relations, reinforce space within the social imaginary for undeserving or “not really disabled” subjects (Soldatic, 2020, as cited in Hunt, 2024b); long Covid and its prepandemic kin provide exemplars of the ensuing harms, which have been conceptualised through a lens of psycho-emotional disablism (see Hunt, 2024a). Importantly, these harms extend beyond the disability–gender intersection. Whilst Wendell (1996) recognised that more fully intersectional power systems shape dominant constructions of what she termed “the rejected body,” the term “normate” has been coined within feminist disability studies to describe the “corporeal incarnation of culture's collective, unmarked, normative characteristics” (Garland-Thomson, 2002, p. 10) that arises at the intersection of (dis)ablism, patriarchy, and other oppressive power structures. Contested illness and the government of disability thus warrant attention through a more fully intersectional lens.

Closer inspection of dominant psy constructions of contested illnesses and their cultural antecedents reveals how dividing practices between normate and nonnormate body/minds arise from what Hill Collins (1990) called a matrix of domination. For example, narratives on hysteria and neurasthenia are contended to have protected White, Anglo-American, middle-class, male privilege and imperialist urges (Jung, 2021). Both diagnoses (when understood as neuroses) were considered to represent a predominantly White, middle-class women's disease, since racially minoritised and working-class women were considered less civilised and thus less susceptible to the alleged consequences of modern civilisation relative to White, middle-class women (Jung, 2021). These oppressive yet unsubstantiated truth-claims, together with the systems of power from which they emerged, have likely left a harmful legacy in clinical practice. Whilst women are more likely to be diagnosed with contested illness such as ME/CFS and long Covid, racially, ethnically, and socioeconomically minoritised groups are less commonly diagnosed, despite indications that such conditions may be more prevalent among these groups (Cohen & van der Meulen Rodgers, 2023; Jason et al., 2009). Additionally, there are indications that long Covid is more prevalent among transgender and sexually minoritised persons (Cohen & van der Meulen Rodgers, 2023). Whilst psy typically individualises health disparities, they can be understood to arise from complex interplays between structural injustices shaped by oppressive power systems and ideologies, social determinants of health (including access to healthcare), sociocultural influences, individual body/minds, and, in the case of postinfectious conditions, a biological trigger (Cohen & van der Meulen Rodgers, 2023; Jason et al., 2009; see also Hunt, 2024a). Within this complex interplay, the long-standing clinical assumption that ME/CFS was a White, middle-class affliction (Kennedy, 2012), combined with underrepresentation of minoritised groups within research (Jason et al., 2009), may have shaped the contemporary clinical imagination in such a way that limits diagnosis and appropriate healthcare among racially, ethnically, and economically minoritised groups, thus furthering impairment, disability, and intersecting inequalities.

Harms wrought by psy's complicity with the government of nonnormate body/minds in the contested illness arena become still clearer when we consider the ongoing conflation of contested illness with psycho-pathologisation through an intersectional lens. For example, racially and sexually minoritised groups, alongside women and gender nonconforming persons, are more likely to be psycho-pathologised and more likely to report poor treatment within (medical and mental) health systems relative to their more privileged counterparts; mental distress is also typically more prevalent among minoritised groups (Cermele et al., 2001; Spandler et al., 2015). Similarly, higher rates of mental distress have been reported among many people with contested illness relative to the general population (see Halacre, 2020), whilst limited intersectional research on ME/CFS indicates that greater barriers to care (including unwarranted psychologisation) and, in some cases, greater severity of impairment, have been reported among women and racially and economically marginalised persons with ME/CFS (de Carvalho Leite et al., 2011; Jason et al., 2009). Additionally, recent intersectional research on energy-limiting conditions indicates that clinical disbelief and ensuing barriers to quality healthcare (again, including psycho-pathologisation) may be greater for groups marginalised by systems of gender, race, ethnicity, and class (Evan et al., 2023). Such research indicates that disability and impairment, whilst individualised by psy, are in fact shaped by intersectional “geographies of privilege” (Sherry, 2016, as cited in Hunt, 2024a), disproportionately impacting those living with multiple forms of deprivation. In other words, although psy depicts disability and impairment as a personal matter, they are thoroughly enmeshed with politics.

No matter what role individual psychology is considered to play in contested illness, the history of conditions such as ME/CFS supports the critical feminist and feminist disability assertion that psy's tendency to individualise (thus, de-politicise and responsibilise) the sequelae of inequity and oppression can be profoundly harmful (Goodley, 2017; Marecek & Lafrance, 2021). Moreover, a situated account of contested illness underscores the pertinence of the feminist disability concept of disability as a disciplinary apparatus (Tremain, 2001, 2015), further highlighting how disability and impairment—most clearly through the lens of normate governmentality (see Garland-Thomson, 2002)—are constituted in intersection with other oppressive power systems. Such thinking reinforces this article's call for an emancipatory reimagining of psy practice, where the term emancipatory implies a socioculturally and biopolitically cognisant, embodied, empowering, and maximally inclusive ethos. It is to this reimagining that I now turn.

Reimagining practice

Since oppressive power relations are central to harms sustained by people with contested illness, power relations should represent a central concern for psy practitioners, following the ethos of feminist therapies. In what follows, I incorporate findings from a nonexhaustive literature review examining power within the context of psychotherapy and disability (Barshay, 1994; Cameron, 2020; Chrisler, 2001; Halacre, 2020; Ingham, 2018; Kaschak, 2001; Marecek, 2017; Olkin, 2017; Prilleltensky, 1996, 2009; Reeve, 2002, 2014), further filtering this through my experience as a disabled woman practitioner and service-user. Consistent with the aforementioned feminist disability motifs, and further inspired by Prilleltensky (1996), I structure the discussion into three interconnected principles foregrounding the importance of power relations within and outside of the therapeutic encounter: the personal is political; valorising marginalised lives; and egalitarian relationships. Given space constraints, I do not seek to provide a comprehensive account or a template for psychotherapeutic work with contested illness. Rather, I offer examples of how these principles can be applied to transform psychotherapeutic work with contested illness in an emancipatory direction. It could well be argued that recognition of, or respect for, each of these principles is detrimentally lacking in dominant psychotherapies within the contested illness arena (see Hunt, 2023a).

The personal is political

The emphasis in feminist therapies on interlinkages between emancipatory sociopolitical change and personal emancipation (Marecek, 2017; Prilleltensky, 1996) is clearly relevant to contested illness; practitioners should thus address the detrimental personal cost of oppressive power systems. However, disability is underrepresented among acknowledged sources of oppression and inequity in psychotherapy theory, practice, and training, even within feminist approaches, and this concern has been partially attributed to underrepresentation of disabled people within the professions (Ingham, 2018; Reeve, 2002). A notable exception here is disability-affirmative therapy (D-AT; Olkin, 2017), developed by Rhoda Olkin, a psychologist living with early onset disability, and designed as a template to (re)structure therapists’ existing practice in a disability-affirming direction. Although D-AT is not wedded to any theoretical orientation, it is consistent with feminist psychology and critical (feminist) disability studies in explicitly recognising how sociopolitical contexts shape disability in intersection with other power systems (Olkin, 2017). To translate this recognition into praxis, therapists must be informed about hostile sociopolitical landscapes, disability rights, social justice movements, and contrasting models of disability, and be willing to assist service-users in navigating these landscapes, making sense of political–personal interplays, and obtaining their rights (Halacre, 2020; Olkin, 2017; Reeve, 2014). In this respect, the work of disabled woman researcher and psychologist Ora Prilleltensky (1996, 2009), drawing on disability studies, critical psychology, and feminist thought, is also highly pertinent.

Beyond D-AT and Prilleltensky's work, limited psychotherapy literature discusses impairment, disability, and power (e.g., Cameron, 2020; Chrisler, 2001; Halacre, 2020; Ingham, 2018; Reeve, 2002, 2014). In these cases, providing space for discussion of body/mind–society, personal–political interplays, typically features as a cornerstone of emancipatory practice, countering psy's individualising, responsibilising tendencies. Practical examples of creating this space from my own practice include interpreting the aforementioned stigmatisation of people with contested illness (as demanding, self-indulgent, lacking work ethic, and so on) as a collective internalisation and reproduction of normate logic, and reframing experiences of feeling pressured into psychosocial therapies and blamed for nonimprovement (e.g., ME Association, 2015) as an artefact of welfare conditionality, psycho-compulsion, and generalised disregard for minoritised groups’ agency (see Clifford, 2020; Showalter, 1987; Stewart, 2016). Whilst the term “psychopolitical validity” (Prilleltensky et al., 2009) has been coined to assess how well psychotherapies or psychological theories account for personal–political interplays, there is little evidence of such therapies or theories within the contested illness arena (Hunt, 2023a). Indeed, I have suggested that the dominant application of a (bio)psychosocial model in this arena ignores the power-laden sociostructural context that has reinforced (bio)psychosocial governmentality as discussed above (Hunt, 2024a). The persistence of this de-contextualised, individualistic biopsychosocial model, alongside its political drivers as already outlined, is likely linked to the lack of sociopolitically cognisant psychotherapies within the contested illness arena and beyond. For example, state sanctioning of individualistic, recovery-oriented psychosocial (cognitive–behavioural) technologies within the UK. NHS and U.S. managed care settings underlines how some technologies of subjectification have become thoroughly normalised (Marecek, 2017; Spandler et al., 2015).

These processes of subjectification, and the wider interplay of political and personal realms, extend to therapists themselves. For therapists to address how various forms of biopower impact upon service-users’ subjectivity and embodiment, they must understand how they too are subject to such power relations, and how psychotherapy represents a prime site of biopolitics (Marecek & Gavey, 2013; Rose, 1998). Critically reflexive self-development work is necessary for practitioners to understand how they internalise oppressive power relations and reproduce them within the therapeutic encounter or in training environments (Ingham, 2018; Reeve, 2002). In working toward emancipatory practice, reflexive therapists can support service-users in exploring subjectivities and conduct that conform to the client's personal moral code, as opposed to an internalisation of dominant social norms. Oppressive cultural logic and hostile sociopolitical landscapes that shape subjectivity also carry embodied consequences, and it is important to acknowledge the physical realities of contested illness (Prilleltensky, 2009). This can be facilitated by truly heeding service-users’ testimonies; in other words, by valorising marginalised lives.

Valorising marginalised lives

Harding's (1992, p. 581) entreaty to “start thought from marginal lives” holds great significance when working psychotherapeutically with people with contested illness. Adopting feminist disability standpoint, Wendell suggested that heeding the testimonies of chronically ill persons would generate an “explosion of knowledge of the human body and psyche” (1989, p. 120), and the same arguably applies to the project of developing emancipatory psychotherapies. Prioritising service-users’ lived experience above all else has reinforced for me the importance of affirming body/minds that continue to suffer no matter how sociopolitical landscapes shift. Validating biomedical realities without individualising suffering is particularly important in this arena because, whilst medicalisation of suffering has harmed many minoritised groups (Spandler et al., 2015), most people with contested illness are at risk of medical neglect (Bê, 2016; Hale, 2018; Wendell, 1996).

Feminist disability resources can assist therapists to understand contested illness as biomedical phenomena without biological reductionism. The term “impairment effects” (Thomas, 2007) denotes the unavoidable, direct impact of impairment: psychotherapists should be well informed vis-à-vis the risks of widely touted therapies (such as graded exercise) for people with energy impairment, and know when to refer to medical personnel whilst supporting the psycho-emotional impact of impairment (see Driffill, 2019). However, as highlighted by this article's situated account of contested illness, impairment is bio-sociocultural in nature, shaped by social inequities and oppressive cultural representations (see Thomas, 2007). Accordingly, the term “externally induced impairment effects” (Bê, 2016) underscores how impairment can be created or compounded by external landscapes of power. This concept, together with the aforementioned concept of psycho-emotional disablism (Reeve, 2006, 2014), helps therapists to understand that impairment and disability (disablism) are not fully separable, and that both can “hurt” physically and psychologically (Cameron, 2020; Prilleltensky, 2009).

Whilst valorising marginalised lives requires affirming and working with the painful effects of disability/impairment, it also requires acknowledging disability as a valuable social identity and culture (Olkin, 2017). Therapeutic work may then involve supporting service-users in positively redefining or reclaiming concepts that have been used to disempower them, as exemplified through the feminist disability rethinking of “dependency” and prizing of interdependency as integral to the human condition (see Bê, 2020; Garland-Thomson, 2002). In practice, this may involve supporting service-users to assert their right to request disability/impairment-related support and disability-affirmative healthcare, and to seek out support networks with other minoritised persons (Chrisler, 2001; Olkin, 2017; Prilleltensky, 1996). Recognition and appreciation of interdependency, alongside valorising of compassion and care, extend to the therapeutic relationship itself.

Egalitarian relationships

At the heart of feminist therapies is an emphasis on mutuality, on seeking to cultivate a maximally egalitarian therapist–patient relationship that considers the intersectional positionalities of both parties (Cameron, 2020; Marecek, 2017; Prilleltensky, 1996). Given the harms wrought by oppressive power relations in the contested illness arena, it is reasonable to contend that any truly therapeutic relationship should ascribe to mutuality. Whilst psychotherapists should not seek to “treat” impairment effects, suffering traceable to psycho-emotional disablism (disempowering relations with the self, others, and social structures) can and should be addressed (Barshay, 1994; Halacre, 2020), and this work can be facilitated by an empowering therapeutic relationship. Literature discussing psychotherapy and disability has acknowledged education, support, empowerment, and advocacy among therapist roles, arguably best encapsulated as being an “ally” to disabled people (Halacre, 2020; Olkin, 2017). Adopting such roles requires careful managing of therapeutic boundaries that should be addressed as part of contracting; flexible yet “holding” boundaries are recommended when working with disability and impairment (Halacre, 2020; Olkin, 2017), and contested illness is no exception. Power differentials can be further moderated through transparency over contracting and the therapeutic process, alongside open case-notes policy or even cowriting of notes where institutional policies allow (Burman, 1990; Marecek, 2017).

In contrast to this ethos of allyship and empowerment, my experience of dominant psy practice in the contested illness space is that the therapeutic relationship can become a vehicle through which oppressive power relations are unwittingly reproduced: practitioners enact their conflicts around disability, with professional relational qualities falling short and apparent infringement of ethical codes (Hunt, 2023a). Given the gulf between ideal and reality in this arena, cultivation of morally deliberative relationships as per feminist relational schools of therapy may be indicated (Stocker, 2005). Here, therapists understand mutuality as a moral endeavour and seek growth-fostering connections on a person-to-person level (foregrounding what might variously be termed the “real relationship” or “therapeutic bond”) without seeking refuge in professional qualifications, manualisation, or the expert persona (Stocker, 2005). This suggestion is motivated by my practice experience, supported to some degree by patient survey data (ME Association, 2015), which suggests that many people with contested illness value personal qualities of the therapist (such as empathy and honesty) above other aspects of therapy.

Finally, whilst the feminist emphasis upon mutuality recognises that therapy is a coproductive endeavour, this comes with caveats. For example, this should not be conflated with therapists expecting service-users to educate them, a scenario which furthers disempowerment (Halacre, 2020). Moreover, mutuality should not be conflated with placing responsibility on service-users for therapeutic outcomes. This dynamic is all too common within therapy in the contested illness arena and risks victim blaming (see Hunt, 2023a); the feminist therapy emphasis on practitioner accountability is a helpful counterforce here (Prilleltensky, 1996; Stocker, 2005).

Conclusion

This paper has espoused a feminist disability studies lens in discussing how gendered, dis/abled, and more fully intersected cultural constructions of the idealised citizen-subject in Westernised societies—further entangled with psy–corporate–state interests pertaining to neoliberal retrenchment of health and welfare sectors—have detrimentally shaped dominant representations and psy (psychosocial) practices vis-à-vis people with chronic illnesses positioned as medically unexplained or contested. More specifically, in contending that people with contested illness are subject to biopolitical technologies designed to shape conduct and subjectivity according to multiply privileged, oppressive norms, I have adopted feminist disability conceptual resources and motifs: the government of disability (of which the psy complex can be considered a component), psycho-emotional disablism, the enmeshing of personal and political, and the importance of starting from marginalised lives. I hope to have demonstrated the urgent need to integrate disability more fully into feminist praxis, with a view to facilitating a more fully intersectional, embodied, and socioculturally and biopolitically situated understanding of disability and impairment. Finally, I have offered examples of how this more nuanced and situated understanding might be applied in reimagining psy (chiefly, psychotherapy) in more fully inclusive, emancipatory ways.

Footnotes

Acknowledgements

I would like to thank the editors and anonymous reviewers for their helpful comments on previous versions of this article.

Declaration of conflicting interests

The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Joanne Hunt

Author Biography

Joanne Hunt is a disabled researcher with a background in psy therapies. Her research interests centre on the (bio)politics of stigmatised health conditions, sited at the intersection of critical disability studies, gender studies, critical psychology, and ethics. Particular interests include the psychology of ableism, and challenges and possibilities in developing sociopolitically and culturally cognisant, disability-affirmative healthcare.

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