What makes something a disease? And why would some people with migraine fight to have migraine recognized as a disease?

Locating migraine in the brain is believed to alleviate personal responsibility, a dynamic that advocates think is important after decades of medical practitioners telling patients that their personalities caused their pain. Identifying migraine as genetic accomplishes the same task – people cannot be blamed for migraine if they were born with it.

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And despite widespread acceptance among headache specialists that migraine is neurobiological, the best epidemiological and genetic evidence has found that migraine, like most diseases, is caused by a complex interaction between genetics and environment, of which only a portion (albeit a large portion) can be attributed to inheritance. And despite widespread acceptance among headache specialists that migraine is neurobiological, doctors have yet to reach consensus on whether migraine is a disease, a disorder, or a condition. … people with migraine bring an embodied epistemology to discussions of migraine, filtering biomedical knowledge through their personal, lived experience. The biomedical knowledge that most resonates with them – that “feels right” – does so in large part because it speaks to their experience of delegitimation. “Disease” serves multiple purposes: it appears to have scientific backing, it “fits” with a bodily experience of progression debilitation that so often accompanies migraine, and it seems like a useful rhetorical frame that can draw attention to the severity of migraine.

This disease frame is then used to change cultural meanings of migraine.

– Joanna Kempner in Not Tonight.