It’s not just a headache. This sentence has been a rallying cry for the last several years in the migraine community, fighting against the idea that migraines are simply bad headaches that we are somehow too weak to tolerate. The stigma surrounding migraine disease is pervasive. It is perpetuated by pain reliever ads (the recent Excedrin #DebateHeadache campaign for example); movies and TV shows; a history of misguided doctors discussing “migraine personality” and that they afflict mostly stressed-out women trying to have it all; as well as eye-rolling colleagues, dismissive ER physicians, and countless others. Recently, we have tried to stop using the word “headache” when describing our illness, except to list it as one symptom of many.
As a child and teen, I knew my headaches were migraines, but I called them headaches and so did everyone else (many of our grandmothers called them “sick headaches” which seems a fairly apt, if simple, description). When I became an adult and my always-severe migraine disease became even more so, I still called them headaches. Somehow it always flowed more easily off my tongue, and my friends and family did understand that they were migraines and that they were quite serious and involved more than my head. I was lucky; I didn’t feel minimized. Of course I had my battles with doctors, teachers, and employers, but they weren’t frequent, and would have occurred no matter what I called the very bane of my existence.
And then twenty years later came the dawn of migraine awareness, at least as I know it. The advent of social media and blogs allowed for unprecedented world-wide communication among people with migraine, and we no longer had to search for rare local migraine or pain support groups and go sit awkwardly in person, which is of course difficult anyway when chronically ill. Most of us simply suffered alone. Even with empathetic caregivers and friends, there is something different about talking to people who really get it. Because, all of a sudden we could get support from 20 friends going through similar difficulties, almost instantly, while lying in bed in the dark. Campaigns like Migraine Awareness Month spread knowledge about the national toll of migraine: over 36 million Americans experience them, and worldwide, it is the 6th most disabling condition (years lost to disability). Facts circulate about the days of productivity lost, and the paltry amount of funds designated for migraine research. And, of course, the fact that migraine is not just a headache.
All of this is true, and yet I still find myself using the word “headache” nearly as often as I use “migraine,” which some of you may have noticed in my previous articles. Because the words were always fairly interchangeable during most of my life, and I don’t personally have any negative association with the word headache itself as it was never used to dismiss or minimize my situation, it is a hard habit to break. Part of this may be because of the broken record feeling Anna Eidt described in an excellent recent post and wanting to vary my vocabulary. At home, I tend to use “headache” when the migraine is fairly mild. This helps John and I communicate more quickly; if I say “I’m getting a migraine” he knows that this will be a tougher one to deal with.
There is also the fact that migraine isn’t the only headache disorder. There is also cluster headache and trigeminal neuralgia, both exceedingly, excruciatingly painful illnesses, just to name two. So certainly not all non-migraine headaches are mild or easily treated. In fact, all headache disorders together become the third most disabling conditions(s) worldwide as far as years lost. Some of my migraines actually are very cluster-like in nature, and I because of this I was prescribed an oxygen tank to keep here at home, though I rarely need it (the last migraine I would consider close to a cluster in severity was in May 2014). Using the word “headache,” then, could be seen as being more inclusive of the entire headache disorder spectrum, and none of those, regardless, can be considered “just a headache.”
Finally, I do have to admit that there is a smidgen of wanting to downplay my pain, sort of the closest I can get to saying “I’m fine”. I mentioned that the word headache is easier for me to say, and that is because in some situations, when I utter the words “I have a migraine,” I am afraid it will look as though I am seeking attention. I know it is self-stigmatizing and incorrect to give in to this worry, but it is an emotional reaction I haven’t been able to banish. Of course I absolutely do not believe that other people with migraine are exaggerating or looking for sympathy when they mention they suffering from one. So why would I feel this way about myself? In fact on Facebook I publicly share so many graphics, articles, and posts about migraine, including personal ones about my own suffering, that I imagine many people have unfollowed me. And when I am explaining to someone that I have the illness, I always call it migraine rather than saying “I get bad headaches,” particularly when I know I might be able to educate them about the disease. It’s only when I have a migraine, in the moment, that I sometimes choke on the more accurate word.
For many of us, myself included, head paid is the most significant migraine symptom, the one that brings us to our knees and drives us to seek relief at any cost. I had very rarely experienced what I now call low- or no-pain migraines before my CGRP studies, but now they occur occasionally. Sometimes after a few days of nausea, fatigue, fever, vertigo, allodynia and irritability the pain will hit. Sometimes it never does. However, there are many people who suffer from ocular migraines and other varieties that are quite scary and serious but don’t have the head pain symptom at all. Using the word “headache” indiscriminately to describe migraine does a disservice to those people, and to all of us who can’t just pop an aspirin and never look back.
Words are very important. The way we describe ourselves and our illness not only reflects on us as individuals, but our community as a whole. At my last ER visit, the kind PA asked “When did this head-” She caught herself, “…migraine start?” And I really appreciated her effort to use the more appropriate term. I imagine I will continue to occasionally use the word “headache” in some situations despite all this, but I will work on being kinder to myself and not minimizing my own pain and my illness as a whole. What about you? How do you talk about your migraines? Feel free to share in the comments.