Migraine Education Day - The Social Life of Migraine
As previewed in my interview with Dr. Joanna Kempner, her keynote on “The Social Life of Migraine” proved to highlight the stigma of migraine to a greater extent when she presented at last month’s Migraine Education Day.
Dr. Kempner started off with the acknowledgment that “most of us know migraine is a thief of a social life”. She argued that migraine is not just a biological entity, and that in order to make our lives better and find solutions, we have to think of migraine as a social entity as well.
Here are some of the highlights from her talk.
"Maybe you’re worried you don’t have a boyfriend yet”
Dr. Kempner began getting headaches around age 5. She was first diagnosed by a pediatrician as having a “Type A" personality. All she had to do was “relax!” Since her mother had migraines, they searched for other opinions but kept being told that she was simply stressed. As a teenager, one of the doctors suggested, “Maybe you're worried you don’t have a boyfriend yet” and you “need to breathe more.” It felt dismissive when she hadn’t even received a proper diagnosis yet, and it made her wonder if everyone thought she was a hypochondriac. The chronic pain didn’t bother her as much as the feeling of shame.
Stigma of diseases
Eventually, Joanna went on to receive her PhD in Sociology, learned about the field of medical sociology, and broke down how diseases can be stigmatized:
1. Social distance – For example, if someone has the flu – the response is “get away from me”
2. Personal responsibility – If someone gets lung cancer, people assume it’s because they smoked cigarettes or if someone has hepatitis B, it’s assumed it was through a sexual encounter.
3. Body parts – Certain areas of the body are not discussed. For example, there are not a lot of news stories about anal cancer.
4. Disorders that affect the mind like schizophrenia.
5. Associated with groups that are already marginalized - HIV aids did not receive a government response and there was very low public response until Ryan White.
History of migraine culture
Migraine is an invisible disease, and while 9 million American men have migraine, the majority are women. Therefore, it’s still thought of as a woman’s disorder. When Dr. Kempner asked the room if they felt that migraine isn’t taken seriously, almost every hand in the room was raised.
She explained, the sociocultural context of migraine has a history that is long, tangled and deeply embedded in our culture. It’s not as easy to fix through education. Stigma is in the institutions. Examples of this in pop culture go as far back as Little Women’s Beth who was sickly, had headaches and was considered sensitive. In the early 18th century, “The Nervous Temperament” referred to mostly artistic, creative witty intellectuals whose nerves being too lax feeble. The Victorian Era migraine meant their brains were very excitable, their senses acute, and imaginations were free. They were viewed to be within the upper class, and could affect men or women. By mid 20th century, Harold G Wolff, described migraine as a type of "personality" that “aims to gain approval by doing more than and better than his fellows through application and hard work and to gain security by holding to a stable environment.” Wolff happened to have migraine as well. This image of migraine being associated with Type A organizational traits within men (i.e. hard working, aspirin eating, high pressure big shot) carried through the 1960s.
Migraine and women
Where did neurotic woman come up? Women with migraine. Walter Alvarez 1952. “Whenever a woman is having three attacks of migraine a week, she is either psychopathic, overworking, worrying/fretting, or otherwise using her brain wrongly.” There was also the "housewife headache" that had some pretty outrageous advertisements to go along with the message.
Now, in the 21st century, migraine has been acknowledged as being a neurobiological disorder. But is it enough to destigmatize? Carolyn Bernstein’s “The Migraine Brain” says “your brain is as high maintenance as they come.” Advertisements for migraine medicine continue to reinforce problematic stereotypes about women in pain. For example, one drug ad showed a nurse with migraine whose back is turned away from little babies; an image that looks eerily similar to some of the 1960s advertisements of women with “housewife headaches.” But once she has taken her medicine, she is able to cuddle babies, happily – a restoration, not just of her job, but of her femininity.
Why does stigma matter?
Stigma harms individuals with migraine as it can damage one’s sense of one’s self. Migraine makes it difficult to work effectively and to apply for longer-term disability when needed. It’s hard to keep a job when you have chronic migraine. Stigma reduces possibilities for seeking and receiving good health care. You can observe the institutionalized stigma of migraine when you see that medical schools and neurology departments do not offer training specifically for migraine, and many neurology departments do not have headache specialist on staff because migraine is not considered an important disorder to treat. Stigma also reduces the supply of board-certified headache specialists. Regular physicians still perceive people with migraine as being whiny and neurotic. Finally and maybe most importantly, stigma significantly decreases the amount of federal funding migraine research receives. The current NIH funding does not match disease burden as most policy makers do not believe it’s significant enough to receive funding.
What can we do? Look at diseases that have been successful for advocacy. Thirty-five years ago, people did not talk about breast cancer. “We as the headache community have to be the change that we want to see. We have to speak out about how migraine affects us. If we do that, will empower the next person.”
Stigma and stereotypes may be the biggest challenges facing us.
Can you tell when a migraine attack is coming?