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I cancel about a quarter of the plans I make. More, if it’s a bad week—but it’s not because I’m reclusive.
Sometimes I cancel because I’m bedridden in a dark room, an ice pack on my head, waiting and hoping for my meds to kick in and give me relief from unbearable agony. I have no choice but to clear my schedule on days like those. How could I take my daughter on a playdate or attend a family dinner when it’s a struggle just to lift my phone so that I can cancel?
But just as often, I break plans because the pain is teetering precariously on a threshold, threatening to tip me into the depths of incapacitation, and I can’t take any risks. This is a familiar feeling for the four million adults living with chronic migraine, a condition in which sufferers experience varying degrees of migraine pain—from agitating but manageable to full-blown and debilitating—an average of every other day.
My migraines have proliferated over the last decade, swelling to the point that I have, for several years now, had only one or two days without pain each month. I know this because I’ve kept a detailed headache diary since early 2017, when I made it my mission to eradicate the problem through a desperate blend of grit, detective work, and experimentation. More than three years later, this determination has yet to pay off: I’m still in pain nearly all of the time and canceling plans just as often.
My migraines have proliferated over the last decade, swelling to the point that I have, for several years now, had only one or two days without pain each month.
That is, until the COVID-19 shutdown.
When California enacted its stay-at-home order in mid-March, I was suddenly and surprisingly liberated from an insidious strain of anxiety that comes from living with chronic illness. For the first time in many years, I was not preoccupied with whether I would be able to keep plans, feeling guilt over canceling, or battling the inevitable FOMO that comes from sitting on the sidelines.
In the pre-pandemic days, as I attempted to keep pace with the outside world, I was trapped in a perpetual assessment of my pain. At every juncture throughout the day, I evaluated the threat of the omnipresent sensations that trace from my right shoulder to my right eye—sizing up the pressure at the base of my skull, the splitting sensation where it feels like an ax is lodged in the back of my head, the throbbing around my temple, and the sharp stabbing above my eye. I’d check in with the symptoms that piggyback on the pain, like unfocused vision, disorientation, and tingling, then weigh it all against whatever was next on the agenda—asking myself, for example, if it was worth going through with an important meeting even though I knew it’d send me over the edge, or what would happen if the twinge in my temple erupted into misery while at an event and I couldn’t drive myself home.
Until the lockdown, I hadn’t noticed that I was slumping under the cumulative weight of these worries. Their endless presence moored me to the negativity that arises when I’m forced by my unwelcomed affliction to turn down work that I can’t handle or to flake on commitments I have made.
While the pain of living with chronic migraines hasn’t gotten any easier during the pandemic… the social expectations have nearly evaporated,
While the pain of living with chronic migraines hasn’t gotten any easier during the pandemic (and it’s even exacerbated some health risks associated with going to medical appointments), the social expectations have nearly evaporated, and that has been an empowering freedom to behold. Chronic illness is isolating—but, apparently, it feels a little bit less so when everyone else is isolated, too.
Not until everyone was forced to stay home did I realize how much energy I spent pining for the life I wished I was living; for the world “out there” I wasn’t always able to participate in.
The thing is, out there is unpredictable. Out there is a minefield of triggers: the fluorescent glow at the supermarket; the inescapable fragrance of air freshener in a public restroom; a cigarette smoker passing me on the sidewalk; the jubilant racket at a playground.
I’m better off in here. I resent this about my life, but, for now, it’s the truth. In here—the home that we have cleared of all possible landmines; where I mustn’t tiptoe around so many dangers—is safer. More reliable.
I’m better off in here. I resent this about my life, but, for now, it’s the truth.
Still, I can’t bear to hide out forever. My corner of California has begun to reopen, slowly leading to more real-world opportunities and invitations. But as I navigate socially distanced backyard visits and face-mask-clad outings, I know that there is one way I will never return to “normal,” even once the pandemic is behind us. I understand now that turning down or canceling plans is self care—for everyone, but especially those of us with health issues. This historic pause slowed the world down to a speed that works for us, if only temporarily. And we haven’t just shed our pants and bras during this time at home—we’ve also shed expectations, like those of what a fulfilling or successful day looks like. I used to measure my own days against what I thought was supposed to be accomplished in a day. That’s a dangerous game for someone whose unruly head calls the shots most of the time, and I’d often fall short.
When healthy people were home during quarantine, too, my yardstick for measuring the worth of a day fell away, leaving me to see that my downtime—even when it’s spent hurting in the dark—was meaningful, too. Taking care of myself is a worthwhile endeavor.
I finally learned what my body has been begging me to understand for years: that not only is it OK to slow down, sometimes it’s necessary. So, as the world gets busier around me, I will cancel without worry and I will say no with less guilt—because I know that prioritizing my wellbeing is the right thing to do.