Sanity Watchers

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

—Susan Sontag, Illness as Metaphor

There is only one cardinal rule: one must always listen to the patient. For if migraine patients have a common and legitimate second complaint beside their migraines, it is that they have not been listened to by physicians. Looked at, investigated, drugged, charged: but not listened to.

—Oliver Sacks, Migraine

I’ve had frequent, gross headaches all my life. It’s just one of those things that is a constant bodily truth. A lot of people I know—my mom, my dad, my bff—also got frequent headaches, so I thought it was a normal part of life, and that most people just complained about it less than I do. I also felt sick a lot—little ailments, weeks of feeling like I was coming down with something that never quite bloomed—and Mr Machine and I would joke about my “hypochondria.” I’ve been diagnosed with chronic sinusitis and put on every decongestant known to man, and it sort helped but the headaches would always come back. If I were a Victorian, I’d think of myself as having a sickly character and leave it at that.

A couple months ago, though, I started having bouts of vertigo (which, if you’ve never had it, is fucking terrifying), and several doctor’s appointments, one long night at the ER, and four brain scans later, I got a diagnosis: chronic migraines. Suddenly, all kinds of moments of mysterious illnesses (like several fainting episodes unexplained by other factors), periods of serious inability to feel normal (fogginess, inability to read for more than 15 minutes despite being a writer and literary scholar), and chronic insomnia/nightmares made sense: I’d been having migraines all along. What I thought of as about a million tiny things wrong with me were actually one recurring thing wrong with me…and despite the dozens, maybe hundreds, of doctor’s appointments I’ve had in the last 15 years, no one even suggested migraines until the ER sent me to a neurologist because I was describing one of the worst sinus headaches of my life while a brain MRI showed that my sinuses were clear.

I’m not resentful of this whole thing: I’m amazed. Migraine is a common, known illness. Mine are worse than some people’s and a lot, lot better than others’. And no one noticed, even though I’ve always been diligent about going to the doctor when sick, following medical instructions, resting when I can, etc etc. The neurologist told me, “You walked into my office a person with sinus disease, inner ear infection, anxiety, and insomnia, and you are walking out a person with migraine.” I can’t describe how transformative that statement was. No matter how much we consciously reject the social stigma of illness, we all internalize some sense that poor health is a moral punishment. My sickly Victorian self felt weak, wussy, whiny, lazy, not in control of my body. Now I feel like a person who needs to figure out which meds work well and who can respond properly to a neurological event. And I like it.