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Gendered Chronic Disease, Embodied Differences and Biomedical Knowledge

A social study of managing chronic pain

Results of the GenDis hormonal migraine study

The hormonal migraine subproject in GenDis has provided novel insights on patients', patient activists' and clinicians' views on migraine and gender and the challenges of managing hormone-associated migraine symptoms.

One of the sub-studies of the GenDis project has focused on hormonal migraine. At the very beginning of the study, it turned out that the gendered subtypes of migraine, here called hormonal migraines, have been less researched both in social sciences and in biomedicine. This observation provided a fertile starting point to scrutinize the social structures of the chronic illness by listening to the perspectives of migraineurs, persons treating migraine and persons advocating for migraine.

In medical practices, hormonal migraine stays easily hidden behind the better known types of migraine. Partly because of this reason, it’s often called the most challenging subtype of migraine to treat. The discourse and root cause of poor manageability is unpacked in our recent article published in European Journal of Women’s Studies, which raises the biological and structural challenges in the medical care of hormonal migraines.

The acknowledgement of challenges in treating gendered illnesses concerns the other illnesses researched in GenDis as well. We challenged the ingrained idea of people with chronic illness as bad patients in a blog post (in Finnish) written for general audience about endometriosis and migraine.

The invisibility of hormonal migraine does not only emerge in the practices of biomedicine, but also in social situations and institutions, such as working life. Occupational health care services are set up for acute sick leaves and long-term reductions in ability to work, but monthly pain episodes require different kinds of flexibility from both employees and employers. The stigma attached to the gendered illness contributes to hormonal migraine remaining invisible in working life, even though many menstruating people also experience its hormonal subtype. An article (in Finnish) published in the Finnish gender studies journal Sukupuolentutkimus explores this.

Hormonal migraine is not only associated with the menstrual cycle, but also with other menstrual fluctuations, such as pregnancy. This migraine subtype is treated with hormonal medications, which are discontinued when attempting to conceive. After stopping medication, migraines during pregnancy and pregnancy seeking times are often left untreated in healthcare, which may influence families’ realized number of children compared with the number they had wished for. Our article published in Social Theory & Health explores these issues.

Patient organizations advocate for the interests of people living with gendered illnesses in the ways they consider best. Migraine awareness has increased in Finland largely due to the long-term efforts of the organization. As elsewhere in the world, migraine awareness campaigns have advocated for migraine as a seriously taken neurological disorder, differentiating it from women’s historically imagined “hysterical headaches”. The GenDis researchers have published an article in Australian Feminist Studies examining how patient organizations frame migraine, fibromyalgia and endometriosis as gendered illnesses.

All the health conditions examined in the GenDis project are intersecting illnesses. This means that a person suffering from one condition is more likely to develop another one of the conditions as well. In our article published in Sociology of Health and Illness, we wrote about how patients experience the entanglement of symptom profiles. Such embodied entanglements challenge the recognition of symptoms, diagnosis, and medical treatment.

Despite of its commonness, hormonal migraine is an illness not that well recognized. It has not gained the same recognition as a neurological disorder as other subtypes of migraine. As a gendered disease, it is still associated with the same kind of condescension as other forms of pain experienced by women. Migraine pain is naturalized as an inevitable part of womanhood in puberty, pregnancy and menstruation. This study has emphasized the need to analyze conditions, even the common ones, from the perspective of gender.

GenDis publications on hormonal migraine