At the age of 16, while driving home from high school, I experienced my first migraine attack.
I lost my vision entirely. The bright shining lights of my migraine aura took over and I couldn’t see the road ahead of me. At the time, I had no idea that the worst part was yet to come: the unbearable, stabbing pain of migraine.
Needless to say, during and after my first migraine attack, I felt afraid and overwhelmed. I didn’t know what was happening to me, when it would stop, or when I would regain my vision. Afterward, I recall asking myself: Does this happen to other people? Do they also lose their vision? Why didn’t my family and teachers warn me about this kind of thing?
Until that point, the people in my life neglected to ever mention the word “migraine.” Although my mother suffered from migraine attacks, she never spoke about them with me. My teachers, health teachers included, never mentioned this condition. The same with my doctors — nothing. I suffered in silence for years after that first attack, not knowing a single other person who could relate to my pain.
Today, well over a decade — and hundreds of migraine attacks — later, I continue to question why there isn’t more conversation about migraine. In the years that I’ve been living with migraine, I’ve learned that there are many more people like me out there — but I’ve noticed that people aren’t particularly forthcoming when it comes to talking about migraine.
What’s more, (false) perceptions that migraine is just a bad headache prevail in our culture. Only when I initiate a conversation around migraine do I find that others will share their migraine experiences and discuss it as an illness instead of a temporary inconvenience.
The fact that there isn’t more conversation about migraine is surprising because migraine isn’t a new phenomenon. People have battled migraines for centuries.
Migraine through the centuries
Hippocrates is said to have described migraine as early as 460 B.C., specifically referencing an aura-like shining light. We’ve also seen writings of migraine in A.D. 30. when Celsus, a Roman medical writer, was said to have “a long weakness of the head… sometimes the pain is more violent, but short, yet not fatal.”
These historical notations of migraine continue in A.D. 131 when the famous Roman philosopher Galen described migraine with the term “hemicrania.” And again in A.D. 400 when Caelius Aurelianus, a Roman physician and medical writer, described hemicrania and “crotophon” as a pounding or hammering paired with a sensation of burning eyes and nausea and vomiting.
Migraine, and its varying names, have appeared across time. Well-known people who experienced migraine include: Julius Caesar, Napoleon Bonaparte, Thomas Jefferson, John F. Kennedy, Sigmund Freud, and Charles Darwin.
The migraine brain has also impacted acclaimed authors and artists throughout history like Virginia Wolfe, Lewis Carroll, Claude Monet, and Vincent van Gogh. More recently, migraine has touched artists and athletes like Janet Jackson, Kareem Abdul-Jabbar, and Serena Williams, to name a few. There is nothing “new” about migraine.
Has the conversation changed?
Despite the fact that 1 in 7 people worldwide is affected by migraine, I think the conversation around migraine as a legitimate disorder is non-existent.
I’m not the first person to feel as though migraine isn’t taken very seriously. In 1979, Joan Didion penned the essay, “In Bed.” She wrote, “For I had no brain tumor, no eyestrain, no high blood pressure, nothing wrong with me at all: I simply had migraine headaches, and migraine headaches were, as everyone who did not have them knew, imaginary.” She continues, “All of us who have migraine suffer not only from the attacks themselves but from this common conviction that we are perversely refusing to cure ourselves by taking a couple of aspirin, that we are making ourselves sick, that we ‘bring it on ourselves.’”
Personally, I don’t feel that the dial on this conversation has moved much in the almost 40 years since Joan Didion wrote that essay. Many people still think migraine is, at best, a headache and at worst an excuse to get out of work or social engagements. As a result, many people who are living with migraine don’t speak up about what they’re going through. Instead, they suffer in silence like I did for so many years.
Now, maybe it seems like I have a harsh outlook on how migraine is viewed by society as a whole. In fact, I know that things are starting to change. There are many incredible doctors, organisations, and individuals working hard every day to find solutions, and their efforts should be applauded. We, as a migraine community, desperately need people out there funding and conducting research studies.
Today, there are many migraine champions trying to push through legislation, conduct research, and share their migraine stories. In this year alone, I’ve been privy to migraine podcasts, blogs, articles, a new migraine documentary called “Out of My Head,” and even visits to Washington to advocate for changes to legislation with the organisation Headache on the Hill.
There is progress — it just may be hard to see in our day-to-day lives.
As I take a step back and look at the many people impacted by migraine over time, one thing remains true: It can happen to anyone, regardless of time-period, gender, age, race, socioeconomic status, or career track.
When I look at the history of migraine, not through medicine, but through conversation, I can only hope that having more people speaking about it today will make the illness more visible in the future. That way, the next time a 16-year-old faces her first migraine, she won’t have to feel as afraid as I once felt.
NPS-IE-NP-00049 September 2020