Patient-created language to describe migraines: what's your favorite phrase?
There’s official medical terminology, and there’s the vocabulary that we patients come up with to describe what we’re going through. Both sets of terms are ever-changing and dependent on people’s education and experience. (Even many well-meaning, smart healthcare providers use outdated terminology no longer endorsed by major migraine research groups and headache specialists!)
I’m fascinated by patients’ creativity in making up terms to describe the elements of their migraine, and am especially intrigued by words and phrases that don’t appear in medical texts but do pop up again and again in everyday discussion about migraine and illness.
Here are three words and phrases I find to be particularly descriptive and helpful in understanding migraine, even if they’re not “official” terms.
Sick headache: I’ve heard many people use this term, particularly those who are about sixty or older. When I advocated for better and more extensive migraine research during Headache on the Hill in 2011, Congressman John Lewis (GA) met with me and other Georgia advocates for a long time to hear our concerns. From what I recall, he said that some of his aunts suffered from “sick headaches,” and now that he was learning about the facets of migraine, he was pretty sure they were migraineurs. I like this phrase because it encapsulates the experience of having a full-fledged migraine episode—as we all know, it’s not “just a headache,” but a neurological episode that can make you nauseated, disoriented, in severe head pain, and more. “Sick headache” is great way to describe my especially disruptive attacks.
Migraine hangover: This is probably the best way to describe what is more dryly called “postdrome” in the medical world. I’ve spoken with tons of patients who individually referred to their own “migraine hangovers” without ever knowing that the postdrome phenomenon was extremely common (or that it had its own name already).
Migraining: The first time I heard this phrase was while on a phone call with my friend Diana (whom you might know from migraine.com or her own blog, Somebody Heal Me: The Musings of a Chronic Migraineur). She said something to the effect of, “Sorry if I don’t speak up too much today—I’m migraining.” Somehow in my many years of having migraine I never thought to simplify the terminology so succinctly. I usually say, “I have a migraine,” “I’m getting a migraine,” or “I’m in the midst of a migraine,” all of which take longer to say and don’t quite encapsulate the complicated reality of being in any one phase of migraine. “I’m migraining” seems like such a great term, and I’ve seen a lot of you migraine.com users employ it on the site and on our Facebook page.
What are some of your self-created phrases you use to describe migraine? What are the benefits of using patient-created language? How does using your own terminology help others in your life to understand where you’re coming from?
How much has your migraine disease changed or evolved over time?