People have battled migraines for centuries. Why does society still refuse to talk about the problem?
***
I was 16 when, as I was driving home from my high school in the United States, 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. At the time, I had no idea that the worst part was yet to come: a migraine's unbearable, throbbing pain.
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. Afterwards, 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?”
Until then, the people in my life never mentioned 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 anyone 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 I've lived with migraine, I've learned that there are many more people like me. Still, I've noticed that people aren't particularly forthcoming when talking about migraine.
What’s more, (false) perceptions that migraine is just a bad headache prevail in our culture. Only when I start 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 throughout the centuries
Hippocrates allegedly described migraine as early as 460 B.C., specifically referencing an aura-like shining light. We've also seen writings on 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 continued 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” (another Latin word for migraines) as a “Pounding or hammering paired with a sensation of burning eyes and nausea and vomiting.”
Migraine, and the many other names for it, has cropped up repeatedly over the centuries. 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 affected 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?
Although 1 in 7 people worldwide is affected by migraine, I think the conversation around migraine as a legitimate disorder is practically non-existent.
I’m not the first to feel like migraine isn't taken very seriously. In 1979, Joan Didion penned the essay “In Bed.” She wrote, "For I had no brain tumour, 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.’”
If you would like to read Joan Didion’s full essay, you can download a free PDF version online.
I don’t feel that the dial on this conversation has moved much in the 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 living with migraines don't speak up about what they’re going through. Instead, they suffer in silence as I did for so many years.
There’s hope
Now, maybe I have a grim outlook on how society views migraine and the people with the condition. In fact, things are starting to change. Many incredible doctors, organisations, and individuals work hard every day to find solutions, and we should applaud their efforts. As a migraine community, we desperately need people to fund and conduct research studies.
Today, many migraine champions are trying to push through legislation, conduct research, and share their migraine stories. This year alone, I’ve been privy to migraine podcasts, blogs, articles, a migraine documentary called “Out of My Head,” and even visits to Washington, United States, 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.
The “ah-ha”
As I take a step back and look at the many people affected by migraine over time, one thing remains true: it can happen to anyone; regardless of the century they live(d) in, or their 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 speak 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 attack, she won’t feel as afraid as I once felt.
NPS-IE-NP-00698 February 2023