So what do you call that weird disease where people get these attacks that can be so debilitating and…
Recently I had a discussion with someone about the terminology I use when it comes to migraine. I thought today might be a great day to explain why I use the terminology I use, because there is a reason!
First, let me say that there is a wide variety of terminology, even among migraine specialists, doctors, researchers and advocates. I’m not going to claim that I’m right and they’re wrong. And I think that we need room for a little grace when it comes to terminology, especially because the world is changing so fast and so many people are involved in the fight against migraine. So this is not a rant against you who haven’t said things exactly "right".
(Want to see a rant? This was a rant.)
First of all, there’s a disease known as migraine. Usually when I talk about someone having migraine, I’m referring to someone who regularly has those attacks that we all know
Some advocates capitalize the word Migraine (like that), to emphasize the fact that it is a disease. I, on the other hand, usually don’t. The normal system is to capitalize when the disease is named after someone (Hodgkin’s disease) and not to capitalize when it’s not (cancer). Because migraine is a disease, I choose to follow the same rules as any disease.
So if you hear me talking about someone who has migraine, I don’t mean that they’re feeling sick at the moment. I just mean they’re one of those people that are prone to have migraine attacks.
So the second term would be migraine attack. Since I usually use the word migraine for the disease, I prefer to use the term migraine attacks for those times when migraine manifests itself as a headache or aura or whatever.
This may sound odd to some people – the common thing to say would be "I have a migraine". But I like differentiating between the disease and a specific attack, and I think this is usually a good way to do it. But let’s be kind – if you want to use migraine as a short form for migraine attack, I would hope no one would get too upset.
For the same reason, I won’t often use the word migraines (plural).
It’s a valid term, but the problem is that people misuse it. Some people think that migraine attacks are just headaches, or that migraine attacks always involve headaches. That’s just not the case.
I had a weather related migraine attack recently, and my whole body just shut down. It was not just a headache.
I’ve also had migraine attacks with no headache at all.
So my advice is – use the term migraine headache with extreme caution.
People who have migraine or migraine disease or chronic migraine can be called migraineurs. That’s just a short way to describe people who regularly get migraine attacks.
Words do make a difference. Migraine is, after all, not just a headache. There really are people who have biological and genetic differences in their bodies, who are prone to migraine attacks. It’s not just something everyone gets if they’re not coping well. There is a disease that is known as migraine that as of yet does not have a cure.
So I think it is important to differentiate between an attack and the disease, and to emphasize that we’re not just talking about headaches.
What? You caught me breaking my own rules? Oh my.
Yes, I do sometimes break my own rules for various reasons. Sometimes it’s just to draw people in who are used to different terminology. And my use of terms has evolved over time.
But I do hope that I’m speaking and writing clearly in a way that promotes better understanding of what migraine is.
So someone who has migraine (the disease) is known as a migraineur. One of their symptoms may be migraine headaches, or it may not be. Migraine is the name of the condition that we’re here to fight, along with cluster and various types of headaches.
Again, there is a wide variety in the use of terminology out there, but I do find that those closer to the issue (ie neurologists, migraine specialists) do tend to be closer to what I write here.
Finally, the point is not to be harsh with people who use different terms, but to find clear ways to talk about migraine that help people understand what it is. I hope this gives you some food for thought!