Fibromyalgia, body image, and body schema
Scarry (1985) famously argues that physical pain is an inarticulate, private, interior state inaccessible to spectators but easily grasped by the pained subject. However, pain is also historically and culturally contingent, fundamentally intersubjective and shaped by social contexts around gender, race, and sexuality (Morris, 1998). Pain is thus a biocultural phenomenon and not solely biochemical. As it lacks objective diagnostic markers, fibromyalgia must be understood bioculturally. Morris’ (1998) biocultural approach recognizes that, while acute pain signals danger, chronic pain no longer signifies an urgent need for action. Fibromyalgia is a series of sensations I have learned to notice without anger or self-judgment, and which I interpret within sociocultural, historical, and political frames of reference.
Fibromyalgia remains a contested diagnosis, despite its increasing legitimacy in Western biomedicine, and a stigmatized identity given contemporary popular representations of the expression or possession of pain as a moral failing (Dolmage, 2014; Halttunen, 1995). Pre-anesthetic as well as contemporary international cultures, such as Hinduism, acknowledge pain as inescapable and respond with acceptance and coexistence instead of a quest for cure. The discovery of effective analgesia in the eighteenth century furthered a bourgeois sensitivity to pain, and accordingly, revolutionized Western cultural meanings of pain as immoral and deviant (Halttunen, 1995, p. 304). Consequently, pain was consigned to disciplinary institutions like the penitentiary or asylum (Foucault, 1975/1995). Halttunen (1995) relates this privatization of pain to the recasting of spectatorial sympathy—or the internalization of another’s pain via witnessing—from compassion to revulsion. In short, witnessing pain from a prescribed social and physical distance is an edifying way for the viewer to appreciate their own social and bodily status, but being party to immediate pain is distasteful and endangers the viewer, rendering them vulnerable to pain’s affects (pp. 307-308).
Evoking disgust in my colleagues is less professional than teaching in sweats. While all garments are inherently painful, clothing allows me to conform to the humanitarian aversion to pain, as I can dress to modulate my daily pain experience and affect transmission to colleagues or students, reducing the chance that spectatorial sympathy occurs.
Charmaz (2002) asserts that chronic illness, like fibromyalgia, is an incursion into the sufferer’s self-concept, as pre-illness predispositions, habits, and assumptions about the world become infeasible, unsustainable practices. Chronic pain demands constant adaptability, reprioritization of tasks, and re-envisioning a self that fluctuates between degrees of intensity. Modifying these habits is a monumentally difficult, ongoing process, since habits of the self “are anchored in emotional attachments to and about the self” (p. 31) and fibromyalgia is a continual annihilation and reconfiguration of the self, through a constellation of new attitudes, lifestyle changes, interactional dynamics, and external expressions of self-concept, such as transforming body image through clothing.
Pain perception by others is highly influenced by outward appearance, or body image, in the clinic and on the university campus. Featherstone (2010) defines body image “in terms of a more visual sense of the image others have of oneself, based upon a person’s appearance: the ‘look’ one has for others” (p. 194), manifesting through makeup, adornment, clothing, stance, facial expressions, and presence, or the affective resonance created by this assemblage (pp. 198-199). Consumer culture presents body image as a process of endless remodeling, particularly for women, for whom fashion and success are conflated and who are never fashionable enough. Beauty is often equated with moral goodness; those who are indifferent to their appearance possess flawed selves. Attention to body image for the fibromyalgic, then, becomes a way of repairing a self already considered flawed for its pain.
Operating in tandem with body image, body schema comprises non-visual sensing of the body, including haptics, proprioception, or spatial awareness of the body and interoception, or awareness of the body’s internal state (Featherstone, 2010, p. 194). Body schemas are disturbed when bodily integrity and the habitual body are disturbed, from loss of a limb to changes in the body’s ability to sense its internal state. This affective body lacks clear definition or articulation, a felt body conveying impressions to its audience. Body image and body schema “work together to produce not only our perception of the world, but the way we sense other bodies when we encounter them in everyday life” (p. 195).
Where fibromyalgia reconstituted my body schema and self-concept as weak, inadequate, and besieged by pain. Where I once viewed myself as stoic, DIY resourceful, self-reliant, my post-illness self is frequently forced to rely on anyone for daily tasks like washing dishes, opening jars, navigating stairs, and buttoning shirts. Developing a body image that projects alt femininities and queer punk style, with their hard, edgy, DIY connotations helped reconstruct my fibromyalgic self-concept as disabled but empowered while accepting the material realities of disability. As Charmaz (2002) notes, “habitual ways of thinking about one’s body shade into definitions of the self. Body and self are not the same thing, but they are intertwined and connected” (p. 36). As fibromyalgia disturbs body schema and thus habits and self-concept, the dressed body for the fibromyalgic academic becomes the vehicle for renewed agency over the biocultural construction of her pain in professional settings.
