Tenderness (central),sensitivity and/or distress: Tracing gendered enactments of fibromyalgia in medical research

Abstract

Despite being unrelated to feminized organs or bodily processes, the contested condition called fibromyalgia is said to be overwhelmingly feminized and diagnosed predominantly in (assumed-) women. Few social scientific studies have explored the reasons or pathways for fibromyalgia’s genderedness. In this article, I analyze medical scholarship on fibromyalgia over five decades to trace how it is gendered in this body of knowledge and how this genderedness is negotiated. I show that the genderedness of fibromyalgia is enacted multiply through the construction of fibromyalgia patient archetypes, through the reinscription and repudiation of clinical axioms in research design, and the elucidation of diagnostic criteria.

Keywords

gender fibromyalgia contested conditions medical research

Introduction and background

Fibromyalgia is a chronic condition that affects 2%–8% of the population (Järvinen et al, 2023). Although it is primarily understood as a pain condition, fibromyalgia is characterized by range of non-pain symptoms like fatigue, dyscognition or fibro fog, disturbed sleep and affect, to name a few. Because fibromyalgia is not associated with any visible physical abnormality, nor verifiable through laboratory tests or radiological imaging, it is medically suspect. The ambiguity around its etiology,¹ a lack of consensus about its pathophysiology,² its unsteady classification, and the resulting lack of legitimacy for fibromyalgia in medicine, law and culture, make it an ontologically contested condition (Schone, 2019: 18). It, like other uncertain and emergent conditions, is an “illness you have to fight to get” as a result (Dumit, 2006). The epistemic marginalization and stigmatization that fibrobearers³ experience and negotiate due to their having a contested illness is well documented (see Armentor, 2017; Brown, 2021; Groenevelt and De Boer, 2023; Heggen and Berg, 2021; Paxman, 2021).

These scholars and many others acknowledge that intersectional differences modulate the experience of invalidation. For example, in their article on gender and chronic pain, Hoffmann and Tarzian (2001) claimed that “medicine’s focus on objective factors and its cultural stereotypes of women combine insidiously, leaving women at greater risk for inadequate pain relief and continued suffering” (p. 13). In her analysis of fibromyalgia in the US medico-legal context, Purvis (2012) argues that women are more likely to be denied social security for fibromyalgia for a number of reasons. First, the adjudication of disability emanating from fibromyalgia relies on clinicians’ normative judgment of the claimant’s disability in the absence of so-called objective medical evidence. Second, as Hoffmann and Tarzian (2001: 17) note, to be treated similarly to their male counterparts, clinicians have to perceive women as being “as ill as similarly situated males.” And finally, since fibromyalgia is rarely diagnosed in men, female fibrobearers would find it impossible to prove that they are equally sick as men. Due to these intersecting factors, Purvis (2012) concludes that the US social security system marginalized women with fibromyalgia since fibromyalgia was seen as “intrinsically gendered” (p. 112).

The fact that although fibromyalgia’s symptoms are unrelated to feminized organs or bodily processes, it is overwhelmingly diagnosed in (assumed-)⁴ women at a ratio of 9:1 (Walitt et al., 2016) makes fibromyalgia’s genderedness a curious matter. Indeed, Barker (2005) suggests “feminization may be the only uncontested fact about this highly contested disorder” (p. 47). However, as Cleghorn (2022: 6) remarks, there are precious few studies dedicated to understanding why fibromyalgia is gendered, despite it “affect[ing] more women than men.” In this article, I address this lacuna by turning to knowledge produced about fibromyalgia by the “primary movers and shakers in the fibromyalgia illness movement”: medical researchers and clinicians in rheumatology (Barrett, 2004: 147). More specifically, I investigate how fibromyalgia is enacted as gendered in medical research published from 1976 to 2023. Since Wolfe et al. (2018) found a stark discrepancy in the gendered composition of fibromyalgia diagnosees and the proportion of the general population who satisfied the epidemiological classification criteria, my explication of the multiple reasons and ways that genderedness is inscribed upon fibromyalgia is especially relevant.

Fibromyalgia’s curious genderedness provided the impetus for Kristin Barker’s book, The Fibromyalgia Story. This book is perhaps the only systematic analysis of the diagnostic category of fibromyalgia in relation to gender that exists today. It details how rheumatologists developed the construct and diagnostic category of fibromyalgia in the 20th century and analyzes sex/gender’s salience in this context. Barker (2005) remarks that in this body of knowledge, any reference to sex is virtually absent, despite the disorder’s overwhelming feminization (p. 44). Hence, she draws attention to the “present-absence of sex and gender from the idea of fibromyalgia” (Barker, 2005: 45). Her analysis of gender in the diagnostic making of fibromyalgia paved the way for gender studies scholars like me to undertake research of the kind encapsulated in this article and influenced biomedical researchers to interrogate their epistemic practices (see: Wolfe et al., 2018). However, Barker’s analysis is grounded in research that is now over two decades old. Medical research on fibromyalgia has burgeoned since and merits a fresh analysis, even on that account alone.

Approach

In this article, I follow up on Barker’s research using an approach inspired by Annemarie Mol. In The Body Multiple, Mol explored how “medicine attunes to, interacts with, and shapes its objects in various and varied practices.” Put differently, Mol focused on how medicine “enacts the objects of its concern” in situated practices (Mol, 2002: vii–viii; emphasis in original). She contended that attending to how enactments are done allows one to recognize that singular diseases are more than one object; they are indeed multiple.

In fibromyalgia’s case, philosophers and scholars of medicine, alike, maintain that fibromyalgia is multiple. Biomedical researchers acknowledge that different fibromyalgias exist simultaneously and that they “did not often identify the same persons” (Wolfe et al., 2018: 2). This alone vindicates my adoption of Mol’s approach to analyze fibromyalgia, over, for example, a historical method such as that of Brown (1995) which presupposes that even if diagnoses will undergo changes and complexity over time, the category will ultimately be progressively reified. As contested illness scholar, Schone (2019) argues, disease definitions are enacted constantly and by various actors and thinking of disease definition as singular and universal obfuscates the diversity of enactments and epistemic standpoints. Schone’s conviction about the multiplicity of diseases propelled him to analyze how fibromyalgias are defined as contested illnesses throughout its history. For much the same reason, I attend to the multiple gendered enactments of fibromyalgia in medical research spanning the concept’s existence.

In this article, I foreground the medical epistemic practices that enact fibromyalgia vis a vis genderedness. I highlight how operational definitions, research objectives, methodological choices, disciplinary conventions and self-evident axioms that undergird those practices enact multiply gendered fibromyalgias. “Genderedness” in this article refers to the state of being implicated in gendered narratives by way of being associated with norms and expectations implicitly linked to gendered bodies. In the same vein, “gendering” is the process where an object becomes imbued with particular gendered narratives through its enactment. My adoption of “genderedness” and “gendering” as analytical frames allows me to build on and extend Barker’s scholarly contribution. For example, Barker (2005) appraises the diagnostic technique of tender points as being a “measurement of women’s general somatic distress” (p. 60) and frames fibromyalgia as “an attempt on the part of rheumatologists to put into biomedical language women’s broadly felt somatic distress” (p. 45). In contrast, my approach shifts the focus toward the interpellation of fibromyalgia as gendered in lieu of taking a position on women, nonbinary people, or men’s embodiment or experience, per se.

In sum, I draw on Mol’s analytical lens of enacted multiplicity to build on Barker’s trailblazing research on gendered fibromyalgia. To do this, I adopt Schone’s logic to longitudinally trace one philosophical context (of genderedness) as it frames a contested diagnosis. Therefore, while this article attends to the enactment of gendered fibromyalgia in medical knowledge production, its relevance extends to the understanding of contested illnesses and the treatment thereof in medicine and society.

Materials and methods

I analyze medical research published as journal articles and book chapters that contributed to the conceptualization of fibromyalgia. I used the search query “‘fibrositis’ AND ‘fibromyalgia’” on PubMed and delimited the results to articles published 1976–2023. I chose 1976 as the starting year since it was the year when the term “fibromyalgia” was first coined and limited the search to 2023 since I conducted the literature search between December 2023 and March 2024. I included “fibrositis” as a search term since it is the immediate predecessor of fibromyalgia and I expected early articles about fibromyalgia to use the terms interchangeably. I reviewed the title and abstract of the 10,366 articles yielded by the search and selected 471 full texts for further review using the following inclusion criteria: “is fibromyalgia the focus of this study?”; “does this article focus on the biomedical or clinical aspects of fibromyalgia?”; and “does it integrate sex/gender as a variable or otherwise comment on the genderedness of fibromyalgia?.” Articles written by the authors of fibromyalgia’s first diagnostic criteria and those by medical researchers interviewed as public proponents of fibromyalgia by Barrett (2004) were included for review even if they did not satisfy my inclusion criteria, since they were highly influential to fibromyalgia’s conceptualization. I call these authors “diagnostic entrepreneurs” of fibromyalgia, following Barker (2005).

In this second stage of review, I read the texts’ abstract, methodology and findings more closely, and identified publications that were commonly referenced. I made systematic notes about the following in relation to each article:

The facet of fibromyalgia discussed (e.g., diagnostic criteria)

Their overarching argument or framing (e.g., “no evidence of it being a muscle disease”)

The operational definition of fibromyalgia (e.g., “disorder of premature neurologic aging”)

In this process, I identified some articles as influential if the claims they made were corroborated, disputed or used as warrants in future research. I selected such articles and those that were commonly referenced for close reading. This selection consists of 58 articles and 2 book chapters. I read these closely and analyzed their research aims, sampling method, the schemas they used to represent their ideas, their use of sex/gender as a study variable, and their use of gendered language and stereotypes. I also noted the authors’ stance on fibromyalgia and their appraisal of fibromyalgia patients, if that information was available. I analyzed the resulting memos and codes iteratively to find patterns about how the texts related to each other, paying close attention to how the genderedness of fibromyalgia was understood and reshaped by its authors.

Throughout the analytical process, my familiarity with fibromyalgia literature was an incredible resource. I could anticipate, for example, that while earlier research would not distinguish between experiencing fibromyalgia and being diagnosed with it, I would need to focus on such intricacies. Furthermore, since I interviewed Finnish stakeholders of fibromyalgia for my larger research project, I was abreast with their conceptualizations of fibromyalgia as a gendered phenomenon and had perused any research they cited as salient to their work or thinking.

In the sections to follow, I present my analysis in four parts, organized in a quasi-chronological way. In the first section, I take up clinical fibromyalgia. I show how genderedness was imbued into fibromyalgia in multiple ways when it was enacted near-exclusively in relation to tenderness. The second section traces the untethering of fibromyalgia from tender points that was underway in the 2000s, and outlines how fibromyalgia’s genderedness influenced this move and was reshaped through it. In the following section, I delve into the biomechanistic research on fibromyalgia published between 2000s and 2020s, to trace how gender was handled in this research domain to the effect of enacting contradictorily gendered fibromyalgias. The final analytical section takes up the changing definition of fibromyalgia from 2010 onwards. There, I reflect on how the bracketing of multiple fibromyalgias under one case definition multiplies its gendering.

Fibromyalgia in the clinic

During the inception of fibromyalgia, its diagnostic entrepreneurs sought to create a case definition of fibromyalgia in order to make it a recognizable clinical entity. They sought to delineate the symptoms that comprised this fuzzy illness without disease, and to outline how it ought to be identified among patients and thereafter diagnosed. This endeavor to expound clinical fibromyalgia is the focus of this analytical section. Here, I analyze how clinical fibromyalgia is enacted as a gendered condition through the exposition of gendered archetypes of the fibrobearer.

The quintessential archetype of a tender fibrobearer predominates this discourse. Perhaps since fibromyalgia’s diagnostic entrepreneurs could not reference biomarkers (or so-called objective signs) as typifying fibromyalgia, they borrowed cultural narratives to enact clinical fibromyalgia. Hans Christian Andersen’s The Princess and the Pea is an example of such a text. The fairytale’s central conflict, in which a royal matriarch uses a pea hidden under layers of bedding to verify the protagonist’s claim of being a princess, is analogized to fibromyalgia in two highly influential texts on fibromyalgia—one in a textbook of rheumatology (Smythe, 1981) and another in the condition’s first official diagnostic criteria (Wolfe et al., 1990; henceforth ACR90). The excerpt reads:

In the morning they asked her how she had slept.

“Dreadfully!” said the princess. “I hardly got a wink of sleep all night

Goodness knows what can have been in the bed! There was something hard in

it, and now I’m just black and blue all over! It’s really dreadful!”

. . . Only a real princess could be so tender as that.

While the use of an excerpt from a fairytale could seem out of place in medical texts, the insight it gives into fibromyalgia’s proposed diagnostic technique is exemplary. The princesshood of the fairytale’s titular princess is tested covertly. When she admits to hurting “all over” the morning after sleeping atop the hidden pea, the matriarch feels reassured that she must be a princess. The tenderness test confirms her princesshood.

The excerpt also exemplifies clinical fibromyalgia. It enumerates the symptoms of unexplained widespread pain and sleep disturbance that the diagnostic entrepreneurs sought to posit as characteristic of fibromyalgia. It also encapsulates the diagnostic evaluation of tender points they wished to formalize. Furthermore, the goal of creating a diagnostic criteria to “differentiate ‘fibrositic’ pain from pain which is purely malingering pretense or neurotically symbolic” (Smythe and Moldofsky, 1977: 931) is also mirrored in the queen’s surreptitious “pea test.” Since the majority of patients, whose illness inspired the coining of “fibromyalgia,” were female, the equation of the fibrobearer to the princess is also unlikely to be accidental. In this story, as in the history of clinical fibromyalgia, the fibrobearer is a model minority in a group of unreliable narrators, who is accorded with credibility based on her passing the diagnostic test of the pea unbeknownst to herself. This archetype characterizes fibromyalgia as feminine and classed, and casts fibrobearers who pass the diagnostic test as respectable unlike their malingering counterparts.

The frame of respectability is echoed once more in the diagnostic diagram of fibromyalgia: a rendering of The Three Graces with fibrositic tender points superimposed on it. While the image of The Three Graces is one of several representations of tender point fibromyalgia, I analyze it as archetypal because of its use in the ACR90 (Wolfe et al., 1990), the reproduction thereof in other articles (see e.g., Guymer and Littlejohn, 2002), and due to its being referenced long after tender points were unseated as the preeminent diagnostic criteria (Endresen, 2007). The image of The Three Graces represents the daughters of Zeus, and, like the eponymous Princess, characterizes fibrobearers as high-born and feminine.

The criteria, adopted as fibromyalgia’s gold standard, standardizes the number of tender points required in a patient to classify them as a fibrobearer. The threshold for tenderness was set such that if the patient flinched, withdrew, jumped or verbalized that they were in pain when the clinician pressed 11 out of 18 designated tender points, they could be diagnosed as having fibromyalgia. If patients responded similarly when “control points”—anatomical red herrings that were the constitutive other of tender points—were palpated or if they characterized the actual tender point as feeling “tender,” they were disqualified from the diagnosis, since that did not clear them of malingering by the standards of the clinical encounter. This diagnostic technique perpetuated the feminine archetype of clinical fibromyalgia since it presupposed that all patients exhibit similar pain behavior. However, since gender socialization allows people socialized to be women to express pain and discourages the same in people socialized to be men, tender points is, in many ways, a “feminized idiom of distress” (Barker, 2005: 60).

In contrast to this respectable archetype, researchers who believed fibromyalgia to be farcical and made manifest as a by-product of clinical practice constructed the fibrobearer as incredulous malingerers. A case in point is in an article titled “Somatization and fashionable diagnoses” (Ford, 1997). Ford asserts that, whereas most people prefer to promote wellbeing and health, some turn illness into a lifestyle, despite having only “nondiseases” like fibromyalgia to back up their claim to the sick role. He illustrates his argument using the case of a 56-year-old fibrobearer with several contested diagnoses. He describes her as “notably histrionic” and criticizes her for wearing heavy cosmetics and jewelry that he deems appropriate only for a teenager. In a bid to undermine her narrative of ill health, he comments on her “healthy and spry” appearance and juxtaposes her self-description of “obnoxious independence” with her lifetime medical history which consists of feminized diagnoses (Ford, 1997: 8). Before concluding the article with the sentence “[h]ysteria has not gone away, it just has a new style” (Ford, 1997: 8), Ford frames fibromyalgia a psychiatric somatoform disorder and its diagnosees as depressed manipulators attempting to seek medical and interpersonal attention. His characterization of the fibrobearer as feminine and his disputation of fibromyalgia as a medical condition are both rooted in the historic disparagement of women’s illnesses (see Cleghorn, 2022) and show how contestation can be euphemized as gendering.

Ford is not alone in positing fibromyalgia as psychogenic. In fact, the primary alternative to rheumatology’s somatic explanation of fibromyalgia is the notion that psychological distress could precipitate fibromyalgia. Here, too, the idea of tenderness is instrumental in enacting fibromyalgia as gendered. The article titled “Tender points or tender patients” (Van Houdenhove et al., 1994) is a good example for this school of thought. Using the case studies of two fibrobearers, this article imbues tenderness with a different meaning than the aforementioned examples: that of trauma. The first case’s fibromyalgia is said to originate in her history of sexual abuse, string of broken relationships and childlessness. The lingering trauma of these events is cast as tenderness. The second case study depicts a 47-year-old woman who started experiencing pain immediately after the passing of her mother. She is presented as a lifelong caregiver from a peasant family who was obligated to prioritize caregiving above all else including her own wellbeing needs and work-life. Although the authors conclude that fibromyalgia occurs “in an individual with a unique life story” (Van Houdenhove et al., 1994: 473), the cases allude to the gendered experiences—of gender-based violence and gendered care burden—that, in the authors’ account, precipitate fibromyalgia. The fibrobearer, in this paradigm, does not only have tender points, but having weathered adversity, embodies tenderness.

The gendering effect of fibromyalgia’s enactment as tenderness is demonstrated in a study on the diagnostic thought processes of rheumatologists (Katz et al., 2010). In the study, participating rheumatologists were each given a case history and asked to choose a minimum constellation of criteria that would allow them to attest that the patient’s diagnosis of fibromyalgia is accurate. The case histories were identical, differing only in the sex of the patient. The authors found the only salient difference among the participants’ diagnostic thought process was that they “were more likely to require a physical finding [of sufficient tender points]. . . when the patient was male” (Katz et al, 2010: 25). This implies that female patients were assumed to be tender by default. This shows that the burden of proof for fibromyalgia diagnosis is gendered, at least when fibromyalgia is enacted as tenderness.

In the above examples I show that while feminization is archetypally imbued into fibromyalgia, this genderedness is multiply enacted. Proponents of fibromyalgia portray the condition as invisible but real, whereas opponents cast fibromyalgia as lending medical validity to people in search of secondary gains. Fibrobearers, in turn, became archetyped either as “young female [patients] who complain of muscle and joint pain” in the absence of clinically-verifiable swelling or arthritis (Yunus et al., 1981: 163); or as “very sophisticated patients” who report “very subjective, distressing and disconcerting” symptoms (Mehendale and Goldman, 2002: 38) while “appear[ing] on the surface as hypochondriacal and histrionic” (Mehendale and Goldman, 2002: 36). Therefore, whatever the clinician’s personal belief on the veracity of fibromyalgia and the credibility of fibrobearers, the fibrobearer and fibromyalgia are gendered.

Away from tenderness

The contested history of fibromyalgia consists of disputation not only of its concept, but also of its official diagnostic criteria. The “gold-standard” ACR90 criteria, although highly influential in research settings, was criticized as being circularly derived. To develop the ACR90 criteria, rheumatologists “with a known interest in fibromyalgia” (Wolfe et al., 1990: 161) each recruited fibromyalgia patients and sex- and age-matched controls from their practice. These subjects were then examined for tender (and control) points and symptom variables “that had already been shown to differ” (Wolfe et al., 1990: 163) between patients and controls, with the aim of finding the most powerful discriminator between the groups. Since the recruitment of subjects into either group depended on the respective investigator’s diagnostic technique, and since many of the investigators had already published some variation of the tender point criteria and therefore used it in their practice, the emergence of tender points as the gold standard for fibromyalgia diagnosis was all but inevitable. Put differently, ACR90 was tautological and lacked validity in that “the evidence which leads one to a proposition cannot then be used to justify the validity of the proposition” (Cohen and Quintner, 1993: 908).

The influence of this tautology on fibromyalgia prevalence is also remarkable. Since the criteria was circularly derived from a sample that was exclusively white and predominantly female, and included dysmenorrhea and premenstrual syndrome (Wolfe et al., 1990) as fibromyalgia symptoms, it stands to reason that the criteria favored the diagnosis of white female patients. Furthermore, since medical researchers believed that (assumed-) women had lower pressure pain thresholds relative to (assumed-) men (see e.g., Cöster et al., 2008), the diagnosis of fibromyalgia using tender points gendered its prevalence (as noted also by Barker, 2005).

The editorial polemically titled “Stop using the American College of Rheumatology Criteria in the Clinic” (Wolfe, 2003a) sought to put an end to this tautology. The piece was written by Wolfe—fibromyalgia’s most prolific diagnostic entrepreneur—as a response to a study of fibromyalgia among the Amish which concluded that 7.3% of the community were afflicted with fibromyalgia (White and Thompson, 2003). Wolfe opposed this conclusion, stating that his research and that of his colleagues revealed fibromyalgia’s prevalence rate to be 2%, and blamed the incongruence of the rates on diagnostic technique. He said that “the harder you press (the more you believe?), the more [fibromyalgia] you find” (Wolfe, 2003a: 1672). Although he does not explicate this, Wolfe’s statement about belief begetting fibromyalgia seems to relate not just to exaggerated prevalence of fibromyalgia as such, but also to the preponderance of women fibrobearers among diagnosees.

Wolfe (2003a) conceded that adopting “tender points, as the essential criterion, was a mistake” (p. 1671) and elaborated why this choice was made. He attributed the construction of fibromyalgia as tenderness to rheumatology’s epistemic paradigm, saying that in the 1970s–1980s, rheumatological illnesses were “described in mechanistic, immunological, or anatomic terms.” He reasoned that “the idea that fatigue, sleep disturbance and pain alone could represent illness” was impossible to conceptualize until the advent of the biopsychosocial model of illness. Henceforth, he advocated for a fibromyalgia concept rooted in “the central psychosocial and distress features of the syndrome” (Wolfe, 2003a: 1671), and called for the disuse of the tender point criterion in the clinic and in medical reports, calling it “disease-creating” (Wolfe, 2003a: 1618).

In the above section, I described how criticisms of circularity and the gendering and “disease-creating” effects that it was seen to engender propelled diagnostic entrepreneurs to untether fibromyalgia from tender points. I also referenced how rheumatological convention influenced the enactment of fibromyalgia as tenderness in the first place. Moving forward, I build on the insights from this and the previous section to expound how fibromyalgia’s enactments in the 21st century.

Fibromyalgia in the body/mind

Although Wolfe calls for the disuse of tender points at clinics, researchers studying the biomechanistic underpinnings of fibromyalgia were the first to respond to his call. Endresen (2007), for example, furthered Wolfe’s claim and asserted that “excluding [tender points] would lead to a different disorder: one that affects far more men with higher pain threshold with the group displaying lower levels of distress” (p. 1000). Endresen’s article was one of several in the 2000s that situated fibromyalgia as part of a group nosology⁵ to investigate its biomechanisms by transcending the proclivities induced by medical specialization. However, before moving to the analysis of biomedically-oriented research, let us consider Endresen’s claim by asking (1) whether the fibromyalgia Endresen deemed more factual had been proposed previously; and (2) why it was not mainstreamed as fibromyalgia.

Inroads to these questions can be made by identifying the influence of rheumatology in constituting the term “fibromyalgia.” Wolfe (1986) wrote that army veterans from World War I were given the fibrositis diagnosis due to the musculoskeletal complaints they reported, and that since the cause of their ailment was attributed to psychological stress, fibrositis was at times equated with psychogenic rheumatism. However, perhaps because fibromyalgia was coined by rheumatologists specifically to prevent their patients from being referred to psychiatrists (interview with Dr Robert Bennett quoted in Barrett 2004: 148), some diagnostic entrepreneurs stressed that psychogenic rheumatism and fibromyalgia were mutually exclusive conditions and that their respective diagnosees were fundamentally different. Yunus is one such scholar. He expounded fibromyalgia using the case study of a “tired and overworked” white housewife who experienced aches “all over” but whose symptoms were helped by warm baths among other things (Yunus et al, 1981: 156). In contrast, he illustrated psychogenic rheumatism using the case of a talkative Black man with anxiety and depression who had “flitting ideas,” claimed that “nothing could help [his] hopeless condition” and whose calm appearance “despite terrible headaches and total body pains” were taken to be proof that his symptoms were bizarre and emotionally-loaded (Yunus et al, 1981: 164). The description of the now-archaic category of psychogenic rheumatism and the impact of rheumatological convention in defining fibromyalgia reveal that inferences about etiology play a role in constituting fibromyalgia. Furthermore, it is also clear that since these inferences draw on gendered behavioral norms, fibromyalgia is indirectly gendered as an illness of white women.

The above examples illustrate that clinical enactments of fibromyalgia are shaped by clinicians’ beliefs about its pathophysiology. For this reason, I turn now to biomechanistic research on fibromyalgia to analyze how they negotiate sex/gender as a variable to enact gendered fibromyalgias. In what follows, I delineate three routes of gendering fibromyalgia. The first relies on data from exclusively female samples to stake claims to fibromyalgia as a condition. The second considers fibromyalgia a “female disease,” and in so doing, furthers a pathophysiological model for fibromyalgia where it is co-constituted with contested conditions linked to feminized organs. The final gendered enactment of biomechanistic fibromyalgia considers fibromyalgia’s genderedness as a bias and seeks to counter this biased genderedness by casting gender as a sociodemographic disadvantage that leads to fibromyalgia instead of as a sex-dimorphic biological vulnerability.

Due to the predominance of (assumed-) women in clinical fibromyalgia cohorts, early biomechanistic investigations sought to understand fibromyalgia’s pathophysiology through the lens of sex-dimorphism. Such studies considered the diagnostic predominance of female fibrobearers a reflection of fibromyalgia’s pathophysiology and generalized findings based on exclusively female samples to the condition at large. For instance, one study recruited exclusively female fibromyalgia patients and controls to find a biomarker for fibromyalgia (Koca et al., 2019) and another explained gendered fibromyalgia prevalence as emanating from sex-dimorphic differences in the temporal summation of secondary pain (Staud et al., 2003). The fact that the findings about “fibromyalgia patients” in both studies was grounded in the investigation of exclusively female fibromyalgia patients underscores how the knowledge about fibromyalgia’s pathophysiology was moored to feminine bodies by default. In other words, it is clear to see how fibromyalgia’s reputation as a gendered condition begets the reinscription thereof in subtle ways, not only in the domain of clinical research but also in biomedical research.

Fibromyalgia is gendered also by founding research on the premise that fibromyalgia is a “female disease.” For instance, while reviewing literature on the relationship between motor vehicle accidents and the development of fibromyalgia, Yunus (2007) cites a study by McLean et al. (2005), which found that the trauma precipitated by the accident could trigger fibromyalgia. Despite agreeing that trauma could precipitate fibromyalgia, he critiques this study as having “certain drawbacks, e.g., a majority (60%) of the patients were male and no psychological factors were measured” (Yunus, 2007: 248). Yunus’ insistence on basing biomechanistic findings of fibromyalgia on a predominantly female sample shows that he believes, like Martínez-Lavín (2021)—who analogizes hysteria and fibromyalgia’s pathophysiologies —that, “male paradigms cannot be used to explain female diseases” (p. 424). Yunus’ explanatory framework for fibromyalgia called Central Sensitization (henceforth CS) is implicitly embedded with this belief. In a nutshell, Yunus contends that fibromyalgia is a CS syndrome whose illness is caused by perturbations to the central nervous system. The group nosology of central sensitivity syndromes brackets other contested conditions like Chronic Fatigue Syndrome, Irritable Bowel Syndrome, Migraine, etc. under one label based on “mutual associations between” member syndromes and the “demonstration of CS to various stimuli among them” (Yunus, 2007: 340). As for how fibromyalgia is demonstrably underpinned by CS, Yunus (2008: 341) asserts: “TPs [tender points] represent CS.” He adds that fibromyalgia patients are hypersensitive to various non-painful stimuli and that this is documented not only in clinical studies, whose findings could be colored by patients’ response bias, but also in research that bypasses clinical subjectivity (Yunus, 2008). In his words, “‘sensitivity’ is a clinical description, but it also indirectly implies the underlying pathophysiology of CS” (Yunus, 2008: 347). Social scientists have long since shown that clinical description of “sensitivity” is moored to white femininity (Cleghorn, 2022: 75–81). Yunus’ synonymizing of sensitivity of the social kind to central sensitization, thus reinscribes the gendering of fibromyalgia as feminine and shows the inextricable link between gendered fibrobearer archetype and gendered fibromyalgia.

Intriguingly, while Yunus evidences CS through existing studies for fibromyalgia and some other member conditions; in some cases, like that of premenstrual tension syndrome and vulvodynia, the overlapping relationship that they have with other central sensitivity syndromes is taken to be evidence enough to subsume them under the same group nosology. This move to bracket overwhelmingly feminized conditions under the group nosology suggests the gendering of fibromyalgia may be enacted not only through the reification of clinical axioms about fibromyalgia patients, but also through its epistemic co-constitution with comorbid conditions.

However, the genderedness of fibromyalgia is not universally touted as self-evident or inevitably feminine. In fact, some diagnostic entrepreneurs assert that the gendered diagnostic prevalence of fibromyalgia is biased and that “true” fibromyalgia is only slightly more prevalent among (assumed-) women than men (Wolfe et al., 2018). They base this claim on two epidemiological studies where participants self-reported the symptoms they experienced. The participants whose symptoms met the cut-off for a fibromyalgia diagnosis were then classified as having criteria-based fibromyalgia. Since the sex-disaggregated prevalence of this fibromyalgia was not as skewed as the diagnosed fibromyalgia, they deemed fibromyalgia’s gender-preferential diagnostic prevalence a consequence of bias. The authors opined that “the central biasing factor is the widespread belief that fibromyalgia is predominantly a women’s disorder” (Wolfe et al., 2018: 10), and that due to this, clinicians were primed to diagnose fibromyalgia in women patients. Two of the authors’ later contemplation about whether the gendering of fibromyalgia was a result of the social construction of diagnostic categories also shows their disavowal of fibromyalgia’s genderedness (Wolfe and Rasker, 2021). This stance is also implicit in Wolfe and Rasker’s endeavor to develop a scale for the measurement of fibromyalgia-like symptoms. When they found increased symptom intensity among young, lower income, unmarried, racialized and female subjects (among others), they inferred it to be a characteristic “of the human response to illness and sociodemographic status” (Wolfe and Rasker, 2006: 2298), and declared that “sociodemographic disadvantage. . . play[s] a role in the development of fibromyalgia-like symptoms” (Wolfe and Rasker, 2006: 2298). Their attribution of higher symptom intensity among female participants to sociodemographic disadvantage rather than biomechanistic vulnerability grounded in sex-dimorphism, especially considering their arguments 15 years hence, suggests their inclination to untether genderedness from fibromyalgia at least insofar as its biomedical understanding.

In this section, I showed that, like fibromyalgia, its genderedness is also multiply enacted. Tender point assessment and its etiological underpinnings gendered fibromyalgia prior to the 2000s. Thereafter, fibromyalgia was gendered by continuing to consider female fibrobearers as representatives of the condition, reifying the feminized clinical archetype by establishing fibromyalgia’s biomechanisms on its basis and by co-constituting the condition alongside comorbid “female diseases.” In contrast, some scholars sought to reverse this feminized gendering by calling it a result of bias and laid the groundwork to distance sex from biomedical fibromyalgia.

Multiple fibromyalgias, shifting criteria

Following the eschewal of tender points and due to the burgeoning rifts among fibromyalgia’s proponents and opponents alike (see Wolfe et al., 2014a), the ACR published a preliminary diagnostic criteria for fibromyalgia that sought alternatives to tender point diagnostics (Wolfe et al., 2010). Since the publication was co-written by diagnostic entrepreneurs who held varying opinions on the merits and pitfalls of tender points, it reflects neither Wolfe’s (2003b) overt antagonism toward tender points, nor Yunus’ (2007, 2008) endorsement thereof as a demonstration of CS in fibromyalgia. Instead, this criteria and its successors published in 2011 and 2016 (which were used to measure the “true” fibromyalgia enumerated in the previous section) bracket these contradictory approaches under singular criteria to enable the diagnosis of fibromyalgia in primary care. In this section, I focus on these three criteria and trace how the bracketing of multiple fibromyalgias multiplies its genderedness.

The new criteria recognized the “shift in the conceptualization of fibromyalgia that occurred in the clinic and in research studies” (Wolfe et al., 2010: 609), and enfolded symptoms that “became increasingly known and appreciated as key fibromyalgia features” (Wolfe et al., 2010: 601). Per this criteria, fibromyalgia’s diagnosis and case definition rely on the scoring of two categorical scales: the Widespread Pain Index (WPI) and the Symptom Severity Scale (SSS). WPI integrates the widespread pain criterion of ACR90, and the element of quantification contained in the tender point criterion by recording the anatomical prevalence of pain in the patient. The scale divides the patient’s body into 19 regions, and each is scored 1 or 0 to represent the presence or absence of pain, respectively. The fact that the WPI speaks not of the quality of pain (and therefore its mechanistic underpinnings) keeps fibromyalgia “on a more solid ground” invincible to “the quicksand because of new research findings [on its pathological processes] years later” (Yunus, 2008: 347). This ambivalence allows for both tender fibromyalgia and unspecified pain to be bracketed under one label.

The SSS comprises four questions about the non-pain symptoms that the ACR deems central to fibromyalgia. The first three SSS items score the so-called essential fibromyalgia symptoms: fatigue, cognitive impairment and waking unrefreshed, respectively. If the clinician evaluates a symptom as causing mild problems or as an intermittent problem, it is scored 1; if it is often-present and moderate, or causes considerable problems, a score of 2 is given; and if the symptom is pervasive, continuous or life-disturbing, the score of 3 is assigned. The final question in the SSS counts whether “headache, pain or cramps in the lower abdomen, and depression symptoms” (Wolfe et al., 2011: 1120) are present at bothersome levels with a score of 0 or 1. The SSS, thus, functions both as a way to make symptoms central to the definition of fibromyalgia and to capture the comorbidity essential to fibromyalgia as a CS syndrome.

Using the WPI and SSS, the new criteria espouse a dual case definition of fibromyalgia wherein the diagnostic threshold is set at a WPI score ⩾7 and a SSS score ⩾5, or a WPI score of 4–6 and an SSS score ⩾9. The fact that the committee asserts that “these criteria are not meant to replace [ACR90], but to represent an alternative method of diagnosis” (Wolfe et al., 2010: 601) further exacerbates the ambivalent multiplication of fibromyalgia. In essence, fibromyalgia could be conceived of either as a “pain predominant somatic symptom disorder” (Wolfe et al., 2014b: 7) or as characterized by “polysymptomatic distress” (Wolfe et al., 2023) in the presence of pain, or as tenderness. Fibromyalgia’s multiplicity is therefore exploded yet uneasily unified by these criteria.

The genderedness of fibromyalgia amidst this protracted yet unified multiplicity is a matter of perspective. If sensitivity or tenderness circumscribes the pain measured by the WPI, fibromyalgia is gendered as feminine. If diagnosis of fibromyalgia is made based on comorbidity captured by the SSS, women are more likely to be diagnosed (see Arout et al., 2018). And, if the limited validity of self-diagnosis were to transcend the bounds of research (stipulated in Wolfe et al., 2016), gendered prevalence may not differ significantly, and raise questions about men’s underdiagnosis (see Wolfe et al., 2018). In sum, fibromyalgia’ gendering as tenderness is simultaneously retained and undercut through the deployment of instruments to capture “true” fibromyalgia that used non-gendered terminology.

Conclusion

In this article, I traced the enactment of gendered fibromyalgias over five decades of medical scholarship to show that, like fibromyalgia, its gendering is multiply enacted. Early, clinical fibromyalgia was gendered as white and feminine using the tender fibrobearer archetype and tender point diagnostics. Thereafter, fibromyalgia’s enactment as tender points was recalibrated in recognition of its gendering effects and in response to criticisms of circularity. In biomechanistic research, fibromyalgia’s gendering wavered. It was reified as feminine by advancing findings about female fibrobearers as representative of fibromyalgia, by touting it as a female disease and by co-constituting fibromyalgia with other feminized comorbidities. But gendered fibromyalgia was also challenged in this research domain by propounding “true” fibromyalgia as less gender-preferential. Biomechanistic research’s ambivalence about gendered fibromyalgia is also reflected in its newer diagnostic criteria. The criteria bracket multiple case definitions of fibromyalgia and their respective genderedness, such that fibromyalgia can be seen as feminine, as feminized or as a condition misconceived as gendered.

In sum, I show in this article that fibromyalgia’s genderedness is multiple, ambiguous and liminal. Gendering is premised on gendered expectations about illness and the presentation thereof, on sampling methods, and the instrumentalization of sex as a variable in medical research. Furthermore, contestation, too, is furthered or counteracted through gendering fibromyalgia analogously to hysteria. Therefore, this article contributes methodologically to feminist research on contested conditions since it lays the groundwork using which researchers can dissect why and how conditions are gendered even when the conditions seem unrelated to sexed biology or gender roles. Further research on the imbrication of gender and contestation has the potential to enhance social equity by raising consciousness among medical researchers and practitioners and foster reflexivity about the ways in which unconscious prejudices seep into knowledge production and healthcare praxis.

Footnotes

ORCID iD

Ahalya Ganesh

Ethical considerations

As per the TENK guidelines, this article does not qualify for ethical review in Finland.

Funding

The author disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Research Council of Finland, grant number 339143

Kone Foundation, grant number 202008728.

Declaration of conflicting interests

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

Data availability statement

The data gathered for this article will be archived in the Finnish Social Sciences Archive

Notes

Author biography

Ahalya Ganesh is a doctoral researcher in Gender Studies at Tampere University. They adopt an interdisciplinary perspective inspired by feminist science and technology studies and crip studies to investigate how fibromyalgia is enacted as gendered and contested in Finnish healthcare and society, and in medical literature. Their research is enabled by the Gendered Chronic Disease, Embodied Differences and Biomedical Knowledge (GenDis) project affiliated to the Tampere Centre for Science, Technology and Innovation Studies.

References

Armentor

(2017) Living with a contested, stigmatized illness: Experiences of managing relationships among women with fibromyalgia. Qualitative Health Research 27(4): 462–473.

Arout

Sofuoglu

Bastian

, et al. (2018) Gender differences in the prevalence of fibromyalgia and in concomitant medical and psychiatric disorders: A National Veterans Health Administration Study. Journal of Women’s Health 27(8): 1035–1044.

Barker

(2005) The Fibromyalgia Story: Medical Authority and Women’s Worlds of Pain. Temple University Press.

Barrett

(2004) Illness movements and the medical classification of pain and fatigue. In: Packard

(ed.) Emerging Illnesses and Society: Negotiating the Public Health Agenda. Johns Hopkins University Press.

Brown

(2021) The social course of fibromyalgia: Resisting processes of marginalisation. International Journal of Environmental Research and Public Health 19(1): 333.

Brown

(1995) Naming and framing: the social construction of diagnosis and illness. Journal of Health and Social Behavior 34–52.

Cleghorn

(2022) Unwell Women: A Journey through Medicine and Myth in a Man-Made World, paperback edition. Weidenfeld & Nicolson.

Cohen

Quintner

(1993) Fibromyalgia syndrome, a problem of tautology. The Lancet 342(8876): 906–909.

Cöster

Kendall

Gerdle

, et al. (2008) Chronic widespread musculoskeletal pain—A comparison of those who meet criteria for fibromyalgia and those who do not. European Journal of Pain 12(5): 600–610.

10.

Dumit

(2006) Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses. Social Science & Medicine 62(3): 577–590.

11.

Endresen

GKM

(2007) Fibromyalgia: A rheumatologic diagnosis? Rheumatology International 27(11): 999–1004.

12.

Ford

(1997) Somatization and fashionable diagnoses: Illness as a way of life. Scandinavian Journal of Work, Environment & Health 23(Suppl 3): 7–16.

13.

Groenevelt

(Irene) and De Boer

(Marjolein) (2023) Contesting misrecognition online: Experiences of epistemic in/justice by vloggers with contested illnesses. Social Science & Medicine 327: 115951.

14.

Guymer

Littlejohn

(2002) Fibromyalgia. Diagnosis and management. Australasian Chiropractic & Osteopathy: Journal of the Chiropractic & Osteopathic College of Australasia 10(2): 81–84.

15.

Heggen

Berg

(2021) Epistemic injustice in the age of evidence-based practice: The case of fibromyalgia. Humanities and Social Sciences Communications 8(1): 235.

16.

Hoffmann

Tarzian

(2001) The girl who cried pain: A bias against women in the treatment of pain. Journal of Law, Medicine & Ethics 29(1): 13–27.

17.

Järvinen

Varinen

Sumanen

(2023) Patients with fibromyalgia in Finnish healthcare center—One-year follow up. Scandinavian Journal of Primary Health Care 41(4): 411–416.

18.

Katz

Mamyrova

Guzhva

, et al. (2010) Gender bias in diagnosing fibromyalgia. Gender Medicine 7(1): 19–27.

19.

Koca

Koçyiğit

Seyithanoğlu

, et al. (2019) The importance of g-protein coupled estrogen receptor in patients with fibromyalgia. Archives of Rheumatology 34(4): 419–425.

20.

Martínez-Lavín

(2021) Fibromyalgia in women: Somatisation or stress-evoked, sex-dimorphic neuropathic pain? Clinical and Experimental Rheumatology 39(2): 422–425.

21.

McLean

Clauw

(2005) Biomedical models of fibromyalgia. Disability and Rehabilitation 27(12): 659–665.

22.

Mehendale

Goldman

(2002) Fibromyalgia syndrome, idiopathic widespread persistent pain or syndrome of myalgic encephalomyelopathy (SME): What is its nature? Pain Practice 2(1): 35–46.

23.

Mol

(2002) The Body Multiple: Ontology in Medical Practice. Duke University press.

24.

Paxman

(2021) “Everyone thinks I am just lazy”: Legitimacy narratives of Americans suffering from fibromyalgia. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine 25(1): 121–137.

25.

Purvis

(2012) A female disease: The unintentional gendering of fibromyalgia social security claims. Texas Journal of omen and Law 21: 85.

26.

Schone

(2019) Contested Illness in Context: An Interdisciplinary Study in Disease Definition. Routledge studies in the sociology of health and illness. Routledge.

27.

Smythe

(1981) Fibrositis and other diffuse musculoskeletal syndromes. In: Kelley

Harris Jr.

Ruddy

, et al (eds) Textbook of Rheumatology. Saunders, pp.485–493.

28.

Smythe

Moldofsky

(1977) Two contributions to understanding of the ‘fibrositis’ syndrome. Bulletin on the Rheumatic Diseases 28(1): 928–931.

29.

Staud

Robinson

Vierck

, et al. (2003) Diffuse noxious inhibitory controls (DNIC) attenuate temporal summation of second pain in normal males but not in normal females or fibromyalgia patients. Pain 101(1): 167–174.

30.

Van Houdenhove

Vasquez

Neerinckx

(1994) Tender points or tender patients? The value of the psychiatric in-depth interview for assessing and understanding psychopathological aspects of fibromyalgia. Clinical Rheumatology 13(3): 470–474.

31.

Walitt

Katz

Bergman

, et al. (2016) Three-quarters of persons in the US population reporting a clinical diagnosis of fibromyalgia do not satisfy fibromyalgia criteria: The 2012 National Health Interview Survey. PLoS One 11(6): e0157235.

32.

White

Thompson

(2003) Fibromyalgia syndrome in an Amish community: A controlled study to determine disease and symptom prevalence. The Journal of Rheumatology 30(8): 1835–1840.

33.

Wolfe

(1986) Development of criteria for the diagnosis of fibrositis. The American Journal of Medicine 81(3): 99–104.

34.

Wolfe

(2003a) Pain extent and diagnosis: Development and validation of the regional pain scale in 12,799 patients with rheumatic disease. The Journal of Rheumatology 30(2): 369–378.

35.

Wolfe

(2003b) Stop using the American College of Rheumatology criteria in the clinic. The Journal of Rheumatology 30(8): 1671–1672.

36.

Wolfe

Clauw

Fitzcharles

, et al. (2010) The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care & Research 62(5): 600–610.

37.

Wolfe

Clauw

Fitzcharles

M-A

, et al. (2011) Fibromyalgia criteria and severity scales for clinical and epidemiological studies: A modification of the ACR preliminary diagnostic criteria for fibromyalgia. The Journal of Rheumatology 38(6): 1113–1122.

38.

Wolfe

Clauw

Fitzcharles

M-A

, et al. (2016) 2016 Revisions to the 2010/2011 fibromyalgia diagnostic criteria. Seminars in Arthritis and Rheumatism 46(3): 319–329.

39.

Wolfe

Häuser

Walitt

, et al. (2014a) Fibromyalgia and physical trauma: The concepts we invent. The Journal of Rheumatology 41(9): 1737–1745.

40.

Wolfe

Michaud

Klooster

PMT

, et al. (2023) Looking at fibromyalgia differently—An observational study of the meaning and consequences of fibromyalgia as a dimensional disorder. Seminars in Arthritis and Rheumatism 58: 152145.

41.

Wolfe

Rasker

(2006) The Symptom Intensity Scale, fibromyalgia, and the meaning of fibromyalgia-like symptoms. The Journal of Rheumatology 33(11): 2291–2299.

42.

Wolfe

Rasker

(2021) The evolution of fibromyalgia, its concepts, and criteria. Cureus 13(11): e20010.

43.

Wolfe

Smythe

Yunus

, et al. (1990) The American college of rheumatology 1990 criteria for the classification of fibromyalgia. Arthritis & Rheumatism 33(2): 160–172.

44.

Wolfe

Walitt

Perrot

, et al. (2018) Fibromyalgia diagnosis and biased assessment: Sex, prevalence and bias. PLoS One 13(9): e0203755.

45.

Wolfe

Walitt

Katz

, et al. (2014b) Symptoms, the nature of fibromyalgia, and Diagnostic and Statistical Manual 5 (DSM-5) defined mental illness in patients with rheumatoid arthritis and fibromyalgia. PLoS One 9(2): e88740.

46.

Yunus

Masi

Calabro

, et al. (1981) Primary fibromyalgia (fibrositis): Clinical study of 50 patients with matched normal controls. Seminars in Arthritis and Rheumatism 11(1): 151–171.

47.

Yunus

(2007) Fibromyalgia and overlapping disorders: The unifying concept of central sensitivity syndromes. Seminars in Arthritis and Rheumatism 36(6): 339–356.

48.

Yunus

(2008) Central sensitivity syndromes: A new paradigm and group nosology for fibromyalgia and overlapping conditions, and the related issue of disease versus illness. Seminars in Arthritis and Rheumatism 37(6): 339–352.