How do Americans with fibromyalgia understand their condition and how do those meanings shape their actions and opportunities? My dissertation, Invisible Illness, Invisible Inequalities: Gender, Race, Class, and Fibromyalgia, broadens our understandings about the intersections of gender, race, class, and (dis)ability using multiple theoretical perspectives and research methods. My project also considers status, legitimacy, care work, and the evolving definitions of wellness. I draw on 493 surveys and 30 in-depth interviews with U.S. adults living with fibromyalgia to explore individuals’ intersectional understandings of health and wellness while living with chronic pain.

Incorporating sociology, social psychology, and Black feminist theory, I understand fibromyalgia as a social process of self-definition and social identity formation. In Chapter 1, “How Race and Class Structure a Gendered Invisible Illness,” I introduce fibromyalgia as a socially-constructed and socially-contested illness. Fibromyalgia is an “invisible” condition of chronic pain and fatigue that affects two to five percent of the U.S. population (ACPA 2020). Interestingly, the diagnostic patterns show a high prevalence of low-income white women. The meaning-making process of fibromyalgia raises questions about symptom legitimacy, quality of life, agency, and social inequalities.

In Chapter 2 (“Methods and Data”), I detail the multiple methods I incorporated within my research. In the first phase, I designed a twenty-minute online survey which received 493 respondents. They ranged in age from 19 to 85 (M = 55.69 years, SD = 13.4) and were primarily white (85.1%), women (90.7%), and middle-class (58.8%). In the next phase, I conducted 30 in-depth interviews with fibromyalgia sufferers from three categories: white women, Black women, and men (of all races).

My findings demonstrate how Americans’ ideologies and intersectional identities structure access to an “invisible” diagnosis and opportunities for wellness at the individual, interactional, and structural levels. In Chapter 3, “Framing Fibromyalgia: Managing Symptoms, Maintaining Well-being,” I show that individuals with more privileged social positionings have less symptom severity, stronger sense of self-mastery over fibromyalgia, and less concern about their conditions. However, identities and status are rarely spoken of as a privilege of well-being: rather, individuals credit their own agency, personalities, and resilience for their symptom improvement.

In Chapter 4, “Wellness Work and the Social Responsibility of Care,” I define wellness as a verb: the social process in which individuals actively pursue well-being, rather than viewing it as an objective state (adjective). Individuals immersed in more caring, accommodating contexts (in the areas of medicine, employment, and the family) have more positive experiences in the wellness process. Importantly, Black women emphasized the social barriers to wellness, understandings which fueled a sense of social responsibility in their advocacy for community care and disability justice.

In Chapter 5, “Identity, Ideologies, and Fibromyalgia: Intersectional Experiences of (Dis)Ability,” I articulate how intersectional ideologies and the controlling images (Collins 2000) of (dis)ability expedite or exclude individuals in the fibromyalgia wellness process. By highlighting the ways that gender, race, and class structure the experience of fibromyalgia, I show how this “invisible” diagnosis is simultaneously a privilege and a form of social control.

In this dissertation, I document how cultural ideologies become pervasive within instances of medical illegitimacy and ambiguity. In my conclusion, I apply my sociological research findings on fibromyalgia to the context of mass disability resulting from long COVID, which – in part due to its relatively recency – is a also medically-ambiguous condition of chronic pain and fatigue. Ultimately, I argue that individual wellness relies on community wellness. Further, equalizing access to wellness requires giving extra support, services, love, and care to the communities most chronically marginalized (primarily, low-income, LGBTQ+, and BIPOC communities). Institutionalizing access to care at the community level will encourage individual-level kindness, compassion, and overall well-being.

Sociological research has long documented the ways in which individuals make sense of who they are and where they belong in the world. This thesis seeks to take up this age-old question and apply it to the experience of transnational adoptees from Guatemala. Transnational adoptees, due to their unique experience of moving across normative familial, racial, cultural, and national borders–all at the same time–must navigate their transgressions of these social identities in order to construct a sense of self. In other words, Guatemalan adoptees occupy unique positions within their adoptive families due to their non-biological but very real familial ties; within the US racial system, sometimes cast as (honorary) White, and other times as people of color; within Latinidad because of their divergent lived experiences from other Latinx folks; and a unique connection to their country of origin, with claims to both their birth cultures and adoptive cultures.To better understand these experiences, this thesis makes use of the social psychological concept of reflected appraisals that help explain how one’s sense of self is based in how we perceive and imagine others to perceive us. Additionally, this thesis theorizes the formulation of the Other, the alienation and ostracization of individuals who do not meet a socially constructed, normative identity. These constructs help illuminate how the transnational adoptee’s sense of being and belonging is different from non-adopted individuals, as well as from that of their White counterparts, communities of color, and their national kin. I identify and analyze four instances in which my 33 respondents feel as if they “don’t fit in”–when they are positioned as an adoptee Other, a racial Other, a cultural Other, and a national Other. Each of these instances are associated with Othering experiences and reflected appraisals, moments when the adoptee’s difference is made salient to them. Adoptee Othering is located in the doctor’s office and other biologized interactions, in adoptee microaggressive encounters, and in their comparing themselves to non-adopted persons. Racial Othering is experienced during racial microaggressive questions, racialized gendered experiences of exotification, and via explicit racism. Cultural Othering is made salient through Guatemalan adoptee’s relationship to Spanish language, being institutionally forced to identify as Latinx, and when navigating their relationship to Latinidad. National Othering is brought up when the transnational adoptee is made aware that they were born somewhere outside of the US, when they have to consider their relationship to immigration, and when interacting with Guatemalans living in the US. Through an analysis of these experiences, I show how Guatemalan adoptees challenge normative understandings of identity categories. I find that they confound social roles–despite their membership in adoptive families and adoptive communities, their role as child, brother, friend, or student, Guatemalan adoptees are set apart from others in their predominantly White communities because of their adoptive and racial differences. I also identify how Guatemalan adoptees disrupt our understandings of achieved and ascribed identities. As they move across (and between) race, Latinidad and national borders, Guatemalan adoptees challenge us to reexamine our assumptions around fixed categories, revealing (il)logics of identity politics in the21st century and the continued relevance of racial, cultural, and national fault lines that undergird identity formation and navigation in the age of color evasiveness (Annamma et al. 2017), post- raciality, and diversity, equity, and inclusion. At the same time that transnational adoptees teach us about identity formation, they are personally challenged to make sense of their identity differences. Throughout this thesis, by centering their lived experiences, I show how Guatemalan adoptees constantly navigate their seemingly tenuous claims to family, race, culture, and nationality. Seemingly tenuous in that it is socially normative categories of fixed identity that adoptees have internalized (reflected appraisals) and are reinforced by external interactions (Othering) that tell them they are different. This perpetual sense of difference (or at least, the uncertainty of when they will need to defend of legitimate their sense of self to others) is unique to transnational adoptees and essential to understand how they move through the world on a day-to-day basis. I conclude with a theorization of the adoptee third-space in relation to “coming out of the fog.” I argue that the adoptee third-space is a psychic-social location that the transnational adoptee finds themself returning to over and over again due to their constant Othering and sense of difference. I suggest that their continued presence in the third-space is one way in which transnational adoptees might connect their individual lived experiences to the structural oppressive systems that allowed for their in-betweenness in the first place. This presence and connecting of the dots is akin to “coming out of the fog,” to borrow a phrase popular in the adoptee community, adoptee’s coming into critical conscious. As the only study, to the author’s knowledge, that offers empirical qualitative evidence of Guatemalan adoptee’s experiences, the contribution is significant to both critical adoption studies and Latinx/Central American studies. Through my theorization of identity formation processesand the ways that Guatemalan adoptees challenge our understanding of identity categories, as well as my concluding thoughts on liminality, this thesis also makes a significant contribution to social psychology and social identity theory.