What do people say about migraine disease or other headache disorders that annoys or angers you?
Somebody Heal Me runs a blog carnival on migraines and other headache disorders. This was their prompt for the current carnival. As someone who has incredibly frequent migraines, I have an answer to this question, of course. In fact, I had a hard time choosing.
The first one that bugs me is “How is your head doing today?” Look, I understand that people want to be nice. I get that I can be a private person, and it can be hard to add a personal touch to a conversation because of that. I get that this is something people know about me that is unusual and, thus, memorable. I appreciate all that.
However, I don’t really want to discuss the details of my health with people just because they want to make conversation. First off, the reason you don’t know much about me is because I am a private person. You wouldn’t know anything at all about my migraines if they weren’t disabling enough to affect my activities.
Secondly, my migraines already play a large enough role in my life, thank you very much. I don’t want to be the person who has migraines instead of kids. I don’t want to spend more time talking about them, except with those few people who are in a position to make my life easier or who are owed some explanation of why I’m making their lives harder. Every other conversation about my migraines is simply taking up more time with a disorder that affects days out of each week.
“Several days a week? That must be awful! When I get a migraine….” That’s the real pet peeve. It’s a little hard to explain why, but I’ll try.
The common conception of a migraine is that it’s a really bad headache. It’s not. It’s a perceptual disorder that can cause light and sound hypersensitivity, visual and auditory hallucinations, somatic hallucinations and related dissociation, difficulty understanding or producing spoken or written language, confusion, fatigue, insomnia, thermodisregulation, vertigo, nausea, and yes, extreme pain. I’m sure I’m missing some, but those are the symptoms I get.
When people try to sympathize over how awful my migraines must be, they’re really saying, “Oh, that must hurt!” For me, though, pain is my least frequent symptom. That comes pretty much only when I get a classic migraine with aura, and it’s incredibly treatable. Maxalt and naproxen sodium at the first scintillation, and I’m aware of where there would be pain, but I don’t feel it. I usually get what is called migraine variant (pdf), or migraine without the pain.
Not so awful, right? Yeah, go back and read the rest of those symptoms.
It’s the vertigo that keeps me out of work the most often. We’re working on getting a useable bathtub in the house, but all we have right now is a shower. Standing with your eyes closed for several minutes when you can’t even make it to the bathroom without listing to the side isn’t the greatest idea, even if you weren’t doing it in order to go sit at a desk while waves of dizziness roll over you. Add bright overhead lights and coworkers typing, talking, walking around, and just clearing their throats, and the whole thing gets unbearable.
Then there’s all the time I spend just having to trust that I’m doing what I mean to be doing. I have to trust that those hands on the keyboard that don’t feel in any way connected to my brain are going to do what I tell them to do. (Or when it gets really bad, I watch them to make sure.) I have to trust that I really do understand the math I do well enough to go from step to step, because I can’t verify it as I work. I have to trust that the words I write are not the disjointed fragments they come back to me as when I read them. I have to trust my spellchecker to catch typos and slowly think through homonyms step by step. At least I have online dictionaries to check my word choices when they stop feeling right.
Oh, and the vision. Did you know that some people can face windows with slotted blinds? Or talk to people with striped shirts without having to carefully focus on their faces? Or tell whether there are two or three Ls or 1s sitting next to each other? Or read light text on a dark background? Or look at things for a second or two without carrying around strong afterimages? I assume from the way the world is ordered that this is true, but I can’t attest to it myself.
So is it awful? I don’t know. I don’t really have a life without migraine to compare it to. It’s a lot of work, and it gets in the way, and it keeps me from accomplishing everything I want to accomplish. But it isn’t constant pain.
Constant pain is what those people mean, though, when they say, “awful”. I can nod and lie by omission, let them keep wandering around with the same misconception that kept me from even talking to my doctor about migraines until I’d already had them for a couple of decades. I can let them think that the weird things that (possibly) happen in their brains are laziness or possible signs of mental illness or possible signs of a more threatening illness, all things I thought before I understood migraines. If they are women, I can let them grapple alone with the idea that they’re just delicate in some unspecified way that plays into gender stereotypes.
Alternately, I can try to educate people on a condition that–conservative estimate based on the research–half a million women and somewhat fewer men suffer from in the U.S. alone. I call that a conservative estimate because I have no idea how many people out there get atypical migraines, but I can tell you how they go undiagnosed. I can tell you how I described classic visual hallucinations of migraines to eye doctors over the years, only to have them shrug them off without telling me why. I can tell you how many doctors said, “Meh”, to vertigo because there was nothing wrong with my ears. I can tell you how many suggested anti-depressants when I described classic prodrome and postdrome symptoms and the frequency with which I experience them. And I can tell you how the doctor who finally told me that migraine can happen without the headache almost made me cry in her office from sheer relief.
I can try to tell all that to the people who say, “Oh, it must be awful”, too. I can try to educate them, in case the information might be helpful, because it certainly isn’t coming from anywhere else.
I can’t, however, guarantee that they’ll hear anything more than, “It doesn’t hurt most of the time.” I can’t guarantee that they’ll think anything but what I’ve thought at various times: slacker, whiner, insane.
That’s the choice I face every time I hear that phrase. I can let the lack of understanding lie, or I can risk having it turned on me directly. It’s not a fun choice. And that’s why I cringe every time I hear it.