1. Gendering illness

Gendering illness: Patient activism, clinical encounters and embodied differences

Convenors: Lilli Aini Rokkonen, Maria Temmes & Henni Alava, Tampere University

Discussant: Dr. Matthew Wolf-Meyer, Institute for Advanced Study, Tampere University

Contact: lilliaini.rokkonen (at) tuni.fi

Seminar room: Horizon (Parallel sessions 1, 2 & 3)

Format: Hybrid

Research on chronic illness has often taken gender as a given and focused on women’s experiences of chronic pain. In this panel, we turn the analytical attention to how gender operates as a category through which experiences of illness and chronic pain are made sense of, expertise is claimed and challenged, disease causation is explored, and decisions about prioritizing some drugs or treatments are justified. Furthermore, we ask how a feminist commitment to recognizing intersectionality can inform the study of chronic conditions. We contend that gendered diseases are connected to a long and complicated history of doctors and scientists attempting to measure, and patients attempting to account for, how bodies marked by gendered and racialized differences respond to embodied pathological processes and biomedical treatments.

We call for scholars from diverse disciplinary backgrounds to join us in theorizing and empirically showing how gender and its intersections with other categories of difference are conceptualized in the research and treatment of ill health. Themes to explore could include, for instance

1) the connections between patients’ everyday experiences, policy debates, and biomedicine

2) how conceptualizations of illness are shaped in these encounters

3) how evolving patient activism and peer communities shape medical research and treatment.

The panel is convened by the “Gendered Chronic Disease, Embodied Differences and Biomedical Knowledge” (GenDis) research project.

Workshop participants will have the opportunity, although it is not required, to pre-submit a draft paper for discussion.

Presentations

Ahalya Ganesh

Venla Oikkonen

Maria Temmes

Henni Alava

Anna Baral & Silvia Marchesi

Lilli Aini Rokkonen

Penelope Lusk

Elina Helosvuori

Fabienne Valmond

Abstracts

Ahalya Ganesh, Tampere University, ahalya.ganesh@tuni.fi

On living with fibromyalgia: A literature review

Fibromyalgia is a chronic pain condition whose havers must bear the weight of multiple uncertainties and gaps in knowledge. On the biomedical front, those with fibromyalgia must contend with the fact that the illness’ etiology and connection to so-called objective biomarkers such as sedimentation rates is as yet unknown. This means that within the consultation suite, those having fibromyalgia have been repeatedly told that they have no disease, or that their experience of illness is propelled by hypochondria, or more gendered yet, hysteria. Within social circles, there is a lack of understanding about fibromyalgia due to the absence of a common language that would lend itself to the explanation of what fibromyalgia is and how it is experienced by its havers. This also means that at a broader social level, fibromyalgia lacks a public profile by which non-havers of the illness can mobilize behind the illness.  All of these gaps culminate in creating a fractured imaginary of an illness that directly affects about 2.7% of the global population. 

In this paper I will be reviewing the existing research on fibromyalgia. More specifically, I turn to social research on fibromyalgia and the experience of the illness in order to understand how to formulate relevant and meaningful research questions for my doctoral project. 

As a result of the review, I was able to focus my newly-formed research questions to seek to ask about (1) the framing of the illness and (2) the reconciliation of the diagnosis and the treatment strategies for fibromyalgia.

Venla Oikkonen, Tampere University, venla.oikkonen@tuni.fi

Living with hormonal products: Negotiating effectiveness, side effects and availability in the treatment of endometriosis

Endometriosis is a chronic illness treated primarily with hormonal products. These include combined oral contraceptive pills, progestin-only pills and hormonal IUDs as well as other hormonal products, some specifically designed for endometriosis, others used in the treatment of other conditions. Hormonal products often have side effects, and endometriosis patients typically try out a number of products in order to find a treatment that is sufficiently effective yet tolerated by the body. Choices of medication are further complicated by global disruptions in the availability of hormonal products as well as constraints arising from coexisting conditions, such as migraine or hypertension. This paper draws on interviews with people living with endometriosis to explore how hormonal products are conceptualized, experienced and negotiated in the treatment of a gendered chronic illness. It asks how people living with endometriosis negotiate effectiveness, side effects and challenges of availability, how changes in endometriosis symptoms shape these decisions, and when and why hormonal products are avoided altogether. I approach hormonal products as relational: they are negotiated in relation to the severity and progression of symptoms, the pros and cons of other treatment options such as long-term use of strong painkillers or complications from surgery, as well as financial concerns (paying for yet another product that may not work). The case of endometriosis highlights the complexities of using synthetic hormones in unique, embodied situations at the intersection of health and illness.

Maria Temmes, Tampere University

Conceptualization of endometriosis in a clinical setting

Endometriosis is a gendered chronic disease with symptoms varying greatly between people and disproportionally to the clinical manifestation of the disease. While in clinical settings endometriosis is treated as a gynecological disease, there is a need for treatment planning that covers multiple areas of specialization. While the main clinical interventions to reduce endometriotic lesions in the body are hormone-based treatment and surgery, the overall treatment of endometriosis patients is broader, including, for example, physiotherapy and sexual therapy. Drawing from an ethnographic data from a clinic, this paper examines how different healthcare professionals took part in the treatment of people who had endometriosis. I ask in what situations and in what ways different experts participate in the treatment of those with endometriosis and how the aims of the treatment are shaped in these encounters? What kinds of aims and expectations are set up for the treatment and how endometriosis as a disease is framed in relation to different areas of expertise? The paper contributes to the recent discussion in feminist STS research on endometriosis that examines the ways in which endometriosis becomes gendered through its conceptualization as a gynecological disease. I ask how the approach to endometriosis as a complex systemic disease is enacted in these clinical settings that stress the need for multi-expert teams.

Henni Alava, Tampere University, henni.alava@tuni.fi

Why are they almost all girls? Clinical understandings of gender in persistent pediatric pain

Pediatric persistent/chronic pain is reported to be on the increase, including in Finland. Recently, considerable funding has been directed to improving its care in Finland, and a process is underway to streamline care throughout the country through improved funding, networking, and training for those involved in providing it. A striking feature of the persistent pain symptoms experienced by children and adolescents is that they are highly gendered. At some Finnish pain clinics contacted for this study, for instance, up to 80 % of patients are girls. This paper will draw on interviews conducted during autumn 2022 with the members of pain teams and pain clinic staff at Finnish hospitals. Since persistent pain is a complex problem often requiring holistic and long-term care, hospitals' pain teams typically combine the expertise of doctors, nurses, physiotherapists, psychologists and social workers. In interviews with these different professionals, I am interested to learn about their views on pediatric pain, on why it appears to be on the increase, and on the ways in which it is or should be cared for. I am particularly interested to explore two questions: first, how clinicians make sense of the profound genderedness of pediatric persistent pain; and second, how the intersections of gender, ethnicity and class appear, are made sense of, remain absent, or fade away, in their understandings of the phenomenon.

Anna Baral (Postdoc researcher, Linnaeus University)

anna.baral@lnu.se

Silvia Marchesi (MD and PhD candidate, Uppsala University)

silvia.marchesi@surgsci.uu.se

“The doctor didn’t even touch me”: body boundaries, pain endurance and expectations towards health providers in patients with vulvodynia in Italy

While patients and patient-activists groups have been mobilising for years to have vulvodynia recognised by the Italian public health system, it is only in 2022 that this painful condition has hit the press, after the mobilisation of public figures and influencers. Against this background, a “community of suffering” (Turner 1967) has been relying mainly upon social media to navigate the complexities of an obscure symptomatology, a years-long diagnostic process and equally complex (and uncertain) therapeutic strategies with the attitude of a “bricoleur” (Craig 2012).

Based on social media ethnography and on a limited number of interviews, the presentation focuses on patients’ expectations towards health providers and on the reconceptualization of body boundaries in the light of doctor-patient encounters. It focuses in particular on the tension between unbearable physical pain and the desire to be touched, not only by sexual/romantic partners, but even more by doctors and nurses. What could be interpreted by some as an invasive intervention, is accepted and validated by others as a “small event” (in the sense of Mattingly 2014) able to spark radical hope in the patient and a new attitude to life with chronic pain.

When chronic pain makes touch intolerable, what makes the trespassing of body boundaries desirable? Is pain endurance the last resort, or a bold affirmation of agency for the patient who feels un-heard and un-seen? How does pain endurance in the doctor-patient encounter compare with pain endurance in sexual intercourse?

Lilli Aini Rokkonen, Tampere University, lilliaini.rokkonen@tuni.fi

Changing landscapes of migraine patient activism

Because of the lack of biomedical knowledge and even misinformation about migraine, it seems highly important for patients suffering from chronic migraine to rely on their patient organization.

Migraine patient organization acts locally by organizing events like peer support groups and recruites and educates new peer supporters. They also act politically straight to governmental level and inform patients about drug shortages caused by pandemic and the war in Ukraine.

Both organizational and individual level of patient activism have digitalized fast during the pandemic years. On organizational level, drug shortages are mainly informed on social media accounts. Personal peer supporters educated by the organization make a match in an app to meet a patient in need of support.

Blogging and instagramming about migraine is one way to do patient activism. This kind of digital citizenship sets a question between patient activist´s own privacy and publicity given for bigger agenda, support for other migraineurs. Publishing about the everyday mundane of living with chronic pain means drawing a fine line between private and public life. It´s for every patient activist to decide by themselves, whether they want to share information for example about their work, family, bodily functions or medication.

However, many patients emphasize not being in need of extensive, personal peer support. Patients follow migraine support groups and the patient organization in social media, but often hide it from their daily feed. This refers to a common reaction of refusing to think about the chronic pain continuously. Still, the patient organization remains to be the place where to ask for help in need.

Penelope Lusk, MS, University of Pennsylvania, USA, plusk@upenn.edu

#MedBikini: Gendered Physician Affect, Activism and Knowledge Creation

The research and treatment of ill health is mediated by the gendered experiences and perspectives of healthcare workers and trainees. Challenging Euro-American norms in the medical professions is critical to reshaping knowledge production, conceptualizations of illness, and patient-physician interactions. In July 2020 the Journal of Vascular Surgery published an article classifying surgery trainee social media posts as either ‘professional’ or ‘unprofessional.’ Considered unprofessional: controversial social or political comments, and “inappropriate” attire including bikinis and swimwear. The article was interpreted as explicit shaming of gendered bodies within the profession and met backlash in the form of a Twitter campaign in which healthcare workers posted their bikini pictures with the hashtag #MedBikini. Here, I analyze Twitter discourse and popular coverage of #MedBikini as a surface reworking of the gendered affective economy in the medical field and suggest implications of this shift (Ahmed). The article was redacted, showing the potential power of online organizing to impact knowledge production. I argue the movement is limited by a non-intersectional framework, and a lack of patient perspectives.

The Vascular Surgery article made medical professional discipline visible, as it utilized surveillance and classification to manifest power and encourage normalization—and attempted to circulate shame among trainees. Participants in #MedBikini re-signified bikinis (and their gendered and racialized bodies) as not-shameful, but valuable and resistant to dominant norms. Simultaneously, the #MedBikini movement highlights how racialized attire (hijab) and racialized bodies continue to be attached to negative feelings in the profession, complicating the potential meaning of the response as a social movement. The reshaping of the affective economy at the discursive level highlights the potential role of ‘affective activism’ in challenging the gendered dynamics of knowledge production in medicine. The intersections of gender, difference and healthcare training clarify how research practices shape the embodied and affective landscape of clinical encounters.

Elina Helosvuori

Postdoctoral Researcher, Faculty of Social Sciences, Tampere University

elina.helosvuori@tuni.fi

Multi-sited ethnography and co-constitution in the study of assisted reproduction

The tradition of multi-sited ethnography originates from Marcus’s methodology that was designed to study how social orders such as the capitalist world system come to be displayed in multiple arenas that cross-cut dichotomies such as the ‘local’ and the ‘global’. Since Marcus’s landmark paper published in 1995, the idea of multi-sitedness has spread beyond its original framing and been used more widely, including in social studies of reproduction.

In this presentation, I developed the idea of multi-sitedness to trace the intra-actions that result in the phenomena of assisted reproduction in Finland. The concept of intra-action draws from Barad’s thinking about co-constitution as the fundamental, processual principle of the continuous becoming of the world. I analyse the assemblage of clinical practices, laboratory technologies and patient experience in IVF (in vitro fertilization).

In my dissertation, I have shown that the enactments of embryos I have traced in various sites are not only different and multiple, but also overlapping and mutual. Drawing from diverse ethnographic material, I argue that paying attention to the dynamics of difference and contestation, but especially to the mutual becoming of entities under observation, is a useful starting point for a research design that makes intra-actions empirically traceable. Through this strategy, research sites can be analysed not so much as different places, but rather, when brought together and analysed against each other, as sites of the mutual and processual formation of the phenomena of assisted reproduction in Finland.

Fabienne Valmond, Doctoral Student

Social and Cultural Anthropology

University of Helsinki

fabienne.valmond@helsinki.fi

Black, single women with fibroids trying to conceive with donor sperm in Finland: intersectionality between race and gender.

Black women with uterine fibroids, who have opted to become single mothers by choice with donor sperm in Finland, especially those indigenous to Africa, are the focus of this paper. It will explore how this group experience fibroids and donor sperm fertility treatment in the context of their immigrant status and the social disadvantages they are exposed to, such as discrimination. This essay will draw from semi-structured interviews with black women seeking health care, namely fibroids and fertility treatment in Finland. These women’s clinical encounters, physical and psychological health journeys, experiences navigating the healthcare system, and sense of well-being will be analyzed. Structural violence will be used to theoretically frame how systematic racism in health care and fertility treatment can transpire in subtle ways, silencing individuals and leading to erosion of trust in health care. By igniting critical dialogues, this study may stimulate initiatives to foster a more receptive and equal health care system in Finland. My positionality as a black immigrant woman who suffers from fibroids and who attempted to conceive with donor sperm in Finland may influence the narrative developed in this paper. However, the subjective context of my situatedness provides a unique position to use an intersectionality approach to understanding health disparities for black women with uterine fibroids and illuminating inequality in infertility.