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.
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.