The "Migraineur" Controversy
“Migraineur” is a term used to denote a person who has migraine. As a writer and word-nerd, I began using the word as soon as I learned it, happy to find a succinct replacement for a four-word phrase. Then I learned that migraineur is a controversial term.
Here’s the uproar: some people believe that if I call myself a migraineur, I identify first and foremost with migraine rather than with anything else in my life. To them, it’s an indication that my identity is wrapped up in—or completely dependent on—having migraine. To them, calling myself a migraineur is a sign that I enjoy the benefits of being sick and don’t want to get better.
Ha! I want nothing more than to get better. I see no benefits in being sick. Yet I cannot deny that migraine plays a role in my identity. I don’t want this to be true, but migraine influences every aspect of my life—from the work I do to activities I’m able to enjoy to the city I live in. My identity is not wrapped up in migraine; it’s more that migraine has usurped my identity.
When I first learned the term migraineur was controversial, I didn’t think much of it. After all, people who have diabetes are called diabetics and people who have epilepsy are called epileptics, right? Well, yes and no. It turns out that those terms are also controversial.
People in online diabetes and epilepsy communities say the same thing—they are more than diabetes or epilepsy and do not want to be defined by a medical condition. The word choice also speaks to notions of control. I read an argument from someone who has epilepsy that saying “I have epilepsy” is more active than “I am epileptic” and, as such, implies that she is in control of the illness, not the other way around.
Language we use influences how we see the world—this is one of my core beliefs. Given that and the rational arguments I’ve read, I should prefer “people with migraine” to migraineurs. But I don’t.
Interestingly, though, I don’t call myself a migraineur. I only use it to refer to other people or to groups of people who have migraine. Whenever my personal experience comes up, I always say, “I have migraine” or “I have chronic migraine.” The fact that I am a person is more important than the diagnosis I carry, so I say that I have an illness, not that I am a migraineur.
I drafted this article through the previous paragraph and then put it aside for more than a year. Six months after writing it, I realized that “person who has migraine” had naturally replaced “migraineur” in my writing. The original argument—that it causes people to tie their identities to having migraine—carries little weight with me. The ideas from people with diabetes and epilepsy were more persuasive.
Ultimately, I decided that it’s not up to me to decide how someone defines themselves. Yes, it’s a little less cumbersome to write “migraineurs” rather than “people with migraine.” But the extra wordiness is worthwhile if it makes some readers feel more comfortable or more empowered. Migraine does enough on its own to erode people’s identity—I won’t use language that could potentially help it along.
How much has your migraine disease changed or evolved over time?