16. Introduction: Vali

Everyone has stories and opinions about experiencing and expressing pain, about being disbelieved. These stories live in a constellation of narratives about patient self-knowledge and the failures of authority and expert performance. Personal, embodied reflection and thinking with stories are valuable sense-making tools in the landscape of chronic pain. But they also exist and function in institutional settings that insist they align with disciplinary beliefs, practices, genres, and linguistic structures.

I have fibromyalgia syndrome (FMS) and myalgic encephalomyelitis (ME), incurable, non-progressive conditions of chronic pain and fatigue of unknown etiology, attended by sensory dysfunction and depression. Though they are designated non-progressive, FMS/ME can induce bodily changes that are progressive or fatal, like neurodegenerative disorders, cardiac problems, and intestinal ischemia and failure. Still considered a wastebasket diagnosis, its primary complaint is "Udambu nohuthu," an answer that baffles the modern clinical gaze's inquiry, "Where does it hurt?" (Foucault, 1963/1994, p. xxi). Pain is not an unexpected intruder but the medium of my existence: monotonous and mundane except for anticipated, yet unpredictable, intensities. This reality is marginalized by Western biomedicine, which dichotomizes pain into acute and chronic and imagines a biopolitical subject that can be reconstituted as autonomous, nondisabled, and economically viable (Hardt & Negri, 2000; Morris, 2000). Acceptance is not an option.

My search for a diagnosis from 2006 to 2007 and my appendicitis and appendectomy in 2014 were spectacular surfacings of this banality. While seeking diagnosis and treatment, I butted heads with rhetorical and semiotic commonplaces — the linguistic and extralinguistic elements that inform macroscale understandings — about chronic pain and those who have it. In 2014, a nearly yearlong chronic perforation of the appendix that ended in bleeding, hardening, fusion, surgery, and loss of organ mobility constituted a massive failure of authority and expert performance in the clinic. In the academic departments where I studied and taught, this rupture constituted my own failure to conform to the illusio of academia, where professors are expected to be intellectual entities unchained from corporeal demands, to be self-sufficient, to valorize overwork, to prioritize the university over all else. Because fibromyalgia heightened my pain tolerance beyond medical credulity, professionals ignored my assertion that something was deeply wrong until I was at death's door.

A nuanced account of the lived experience of chronic pain — simultaneously and contradictorily singular and unexceptional — as a nonwhite woman in the U.S. should consider:

  • Biomedical definitions and expectations of fibromyalgia;
  • Intersubjective experiences of fibromyalgia, which are bounded in their expressions by bourgeois norms of civility and propriety, and, are as Morris (1998) suggests, more biocultural than biomedical; and
  • The affective, rhetorical, and decolonial dimensions of fibromyalgia.

"The logics of ableism are intertwined with the logics of racism, classism, and heterosexism" (Yergeau, 2018, p. 5) as well as ageism and size bias. Being a young (23 years old when I sought a diagnosis and 30 when my appendix ruptured) queer South Asian female graduate student of slim build generally leads professionals to conclude my pain sprouts from hysteria, "graduate student syndrome," pregnancy, or laziness and malingering. An interpretation of pain unanchored in the patient's bodyminded experience, a richer affective site for clues than the objective image, risks mismanaged care, up to and including the possibility of death.

Acute pain and chronic pain are historically and culturally contingent. Regardless, fibromyalgia — a disability characterized by pain, not a disorder that takes pain as a symptom — is generally imagined in the same terms as acute pain, from popular culture to biomedicine. But beneath the visual fetish that determines the rhetoricity of the body in pain, fibromyalgia may be construed as a physiological expression of disciplinarity, as well as "a corporeal resistance to harmful labor practices" (Alaimo, 2012, p. 31), disturbing the humanitarian sensibility that deems pain eradicable and therefore unacceptable; consequently, its expressions are perceived as titillating and obscene (Halttunen, 1995).

Here, then, is the lived experience of a queer Eelam Tamil American woman whose ordinary horizon is decrepitude, whose selfhood is structured by unremitting pain and the social and biopolitical imperatives that construct and constrain its expressions, treatment, and legitimacy.

(–13. Introduction: Adi)