You don’t have to read many stories on migraine.com to begin to understand that migraine is very stigmatizing. Unfortunately, there’s remarkably little research on this issue. However, we can learn something by looking at research on how stigma “sticks” to other diseases.
Diseases are stigmatized when the people who have them are discredited with negative labeling. Sometimes this stereotyping is internalized and people begin to feel ashamed of their disease and hide it. Sometimes people experience discrimination or lose friendships and other social relationships because of this stigma.
Either way, stigma is a serious consequence of disease. The social processes that lead to stigma cause unhealthy stress, which — in turn — can make a person even sicker.
On the face of it, migraine shouldn’t be so stigmatized. After all, it’s very common and it’s invisible, so it is easy to conceal. However, migraine becomes more difficult to hide as it becomes more severe, necessitating more days of off work and away from family. If you are disabled by migraine and consistently unable to meet social obligations, you may find that you are vulnerable to stigma.
Indeed, in the first study of migraine and stigma in the US, Drs. William Young, Jung Park, Iris Tian and myself, found that as the impact of migraine gets worse, the stigma of migraine increases. We also found that people with chronic migraine are reporting much higher levels of stigma, on average, than those with epilepsy — a disease that researchers have long understood to be highly stigmatizing. The reason, it turns out, may be that chronic migraine is just incredibly disabling — and disability, no matter what the cause, is highly stigmatizing.
Stigma can also be institutionalized, for example when negative attitudes about a disease are encoded into governmental and corporate policies. With this in mind, one might interpret the federal government’s consistently low levels of funding for migraine research as a case of institutionalized stigma.