Have you ever felt like someone looked at you as if you were a neurotic, hysterical female when you couldn't do something because of a migraine? You're definitely not alone. But why does this happen, and what's its impact on the perception and treatment of migraines?
I just finished reading the aptly titled Not Tonight: Migraine and the Politics of Gender and Health by sociologist Joanna Kempner. The title pokes fun at commonly held misconceptions and gender biases associated with headache disorders. This isn't your traditional self-help book that so many of us read looking for a way to manage our migraines. Rather, it's a scholarly investigation of society's view of migraines, the role of gender identification in this view, and the quest to "legitimize" our disease. It's not a quick read, but it's certainly fascinating. It doesn't hurt that she identifies our own Teri Robert as, "the most visible and vocal patient advocate for migraine." In other words, this author has done her research!
Kempner began this research as a migraine patient herself. She:
- attended professional conferences to learn from and interact with migraine specialists from around the country;
- became a part of many online migraine communities and to speak with advocates representing a wide array of headache disorders;
- peppered the book with quotes from her conversations with doctors, advocates and patients;
- joined ranks with these advocates and migraine specialists by going to Washington, D.C., to lobby for better treatments and increased research during "Headache on the Hill" held by the Alliance for Headache Disorders Advocacy; and
- interviewed executives of pharmaceutical companies involved in the production and development of headache/migraine treatments.
Her book looks at the evolution of migraine from a disorder associated with high-strung, intelligent, neurotic women to that of a recognized neurobiological disease affecting more than 36 million Americans. She discusses issues related to the how society views migraine and other headache disorders, why there is so much difficulty with perceiving these disorders as legitimate diseases, and why there is frequently so much stigma attached to these disorders. Much of her book is about the role that gender bias plays in this. Her stated purpose of the book is to:
"Cast a new light on how, exactly, our shared schemas and beliefs are related to the process of disease legitimization and social problem formulation. Chances are that we all know someone who has a headache disorder. So why do headache disorders continue to be neglected? And what does their neglect say about the political and cultural processes structuring the creation of knowledge and health policy about pain? Understanding this process requires a fundamental understanding that disease is more than an objective biological phenomenon - it is a source of rich cultural meaning_."_
"Not Tonight" is divided into chapters that look at the historical overview of the conceptualization of migraine over 300 years:
- an overview of how headache and migraine specialists review this historical shift,
- a look at the online movement, and its effort to change how people view migraines and other headache disorders, and
- the marketing strategies of big pharma and how they reflect and shape the cultural perceptions of migraine and headache disorders.
"Not Tonight"concludes with a case study of what migraine and headache medicine might look like if the patients were predominantly male. Her overarching thesis can be summed up by her quote that "the credibility and legitimacy of a disorder - and how much we, as a society, choose to invest in its treatment," is intimately tied to how we perceive the moral character of the patient. She does this by identifying what is known as the migraine personality. This migraine personality is, in large part, composed of conceptualizations based on the fact that migraine is seen, and is in fact, a predominately female disorder.
She concludes her study by stating:
"... to be truly successful, headache advocates must directly address the moral judgments so often made about the charter of those who have headache disorders. This is true at the policy level as it is at the interpersonal level. The stigma associated with migraine contributes to the legitimacy deficit, eroding the identity of the person with migraine, harming her ability to seek and receive care, and embedding itself into institutional policies created about people in pain... If neurobiology can't save headache disorders, what hope is there for people in pain?"
She posits that the issue isn't convincing people that headache disorders are real; but that the issue is "reframing stories about people who have headache disorders." She states that these people aren't the "hysterical neurotic whiners of popular culture." She extols them as people of "great strength and stamina to live with a headache disorder." She calls them "fighters" who "struggle" but "survive and very often thrive, despite enormous pain and disability."
Joanna Kemper is one of us. She shows great understanding and compassion for those with headache disorders, but looks at the disease from an objective, scholarly viewpoint that may empower us to better understand the battles we fight in the legitimization of migraine and headache disorders. This understanding is a path to equipping us to know how to interact with doctors and society and to develop strategies for decreasing stigma. I give this book a wholehearted five stars! It may not be a quick or easy read, but it's one most people will find fascinating and eye-opening.
More helpful reviews:
Kempner, Joanna. Not Tonight: Migraine and the Politics of Gender and Health. Chicago, Illinois: University of Chicago Press, 2014.
Wishing you health, hope & happiness,