I do not like writing about myself (a curious disclosure, coming from someone who's written what used to be a called a "personal newsletter" every Sunday night for getting close to a decade now). I was raised to distinguish between public and private, intimate and casual, personal and professional.
But every now and again I will decide to write about things that affect me (in this case, migraines) in the hope that it will benefit other people.
So herewith a version of a Twitter thread that, like most of my tweets, will eventually be deleted.
Before I endured my first migraines - in my early teens, certainly, and from memory like before I was ten years old - I experienced them second-hand. I watched how they hit someone else in my family, not fully understanding the white-knuckle debilitation that they wrought.
There's another word I have belatedly come to accept about migraines: they are disabling, even if they are not widely (or federally) recognized as a disability.
But in all cases, they are more than "just a headache".
Last Friday - a pretty busy day at work, inconveniently - I'd already been dealing with about a week and a half disrupted sleep, fatigue and exhaustion, light sensitivity, daily intervals "wow my head really hurts where'd I put the excedrin" pain, and episodic aphasia (one of my specific symptoms, which manifests as me struggling to put coherent sentences together when speaking and in some cases when reading or writing). Around 4pm or so, I remember telling my colleagues that I needed to take a screen break and would be back online later. Fast forward about six hours, and I find myself in bed fully clothed with no memory of getting there.
(As a real-talk aside, I then spent the next four or so hours dealing with what I will describe only as a News Situation, so by the time I went back to sleep it was around 3am)
That collapse, because that's what it was, happened despite my efforts to medicate (shout out to the emergency cocktail that is a shot of caffeine and a strong dose of Excedrin Migraine), stay watered (dehydration makes me more susceptible to a bad flare up), and cut back as much as possible on video calls. I'd already turned the magnification on all my screens up to a size that could likely be read from the other side of the street, though I had not yet resorted to the sunglasses-at-the-desk situation.
I have known for a while that I need to tweak my medications and possibly go back on to a prophylactic treatment regime, which means getting on the books with a specialist and then a few months of trying different combinations of prescriptions. I don't tolerate so-called 'triptans', as I've learned (expensively) over the years but there are some interesting new options available that I've yet to try. Whether insurance will cover these is an open question.
At this point I have spent cumulative years of my life managing my migraines; cancelling plans so I can hide in dark rooms, squinting through the pain with one eye open so I can hit deadlines, wearing headphones just to try to make the world quieter, keep a comprehensive food diary to try to identify correlations.
And while I have benefited from the kinds of jobs with insurance and PTO also from supportive colleagues and bosses, I always feel vaguely like a fraud. The phrase I've heard more than once - "can a headache really be that bad?" - rattles around my brain while I try to power through the rougher days and weeks. You can't see a migraine (unless you count the times when I just break down crying), and if you've never experienced once it can be hard to understand.
There's a rhythm to these, and each element of it sucks. Seeing a specialist, an option not available to everyone, was life changing. It took a particularly brutal period during which I spent each month with more migraine days than without to finally get me to seek out a neurologist, in sheer desperation. And even after that it took nearly a year of trying different kinds of treatments to find one that stuck...until it didn't.
Because that's the thing about migraines - they're slippery (and relatively under-researched).
So despite my conditioning, I talk about how migraines have affected my life. I am explicit about when I need to go "off-screens" and why I might need to disappear for several hours, or why I may show up in the office wearing sunglasses and the air of someone deeply hungover. I am explicit with the friends with whom I had dinner plans (unless I pass out before I can send the message).
I do not (yet?) claim the word "disabled" for myself, but because of my migraines (and my asthma, and my chronic allergies, and my joint issues, which according to some theories are all related) I have a more than passing familiarity with how hostile the world is to people who need accommodations of any kind.
We barely consider the needs of people whose disabilities we can see, much less the ones we can't.
Pleading for it to depart never works.
Better to invoke blessing, welcome
the unbidden guest—it’ll get worse
before it gets better. Then finally,
as Emily was wise enough to foresee,
“After great pain, a formal feeling comes.”
— from Migraine by Barbara Schmitz