I was in Dublin, and it wasn’t raining.
I was in Dublin, and the sky was clear, and the streets were singing their wily song—the melody that ensnares your heart and beguiles your mind and sends you stumbling through an unfamiliar city—and my gut was ruining everything.
We had only a week in Europe—a few days in Dublin and a few in Munich—and my body refused to cooperate with our tight schedule. Behind my ribs on my right side, a dull pain (not throbbing, not stabbing, not pulsing or pounding, but a steady, unwavering pressure) persisted. And I lay in a bed that was not mine, one hand pressing a newly purchased heating pad to my side, the other cradling my phone, on which I played an endless loop of YouTube videos, while the Dublin sun filtered through my window.
Had I really flown across an ocean to lie in bed and watch YouTube videos?
Chronic pain can’t really be explained; it must be experienced. Before I went to the doctor last year and learned of my diagnosis, I’d never known what it was like to be bedbound. Sure, I’d been sick with the cold or the flu, stuck inside and feeling miserable. But I’d never before known what it’s like to feel trapped inside your own body, powerless and unseen and inscrutable to the people around you.
I’d never before cried in frustration because this pain, this dull persistent pain, wouldn’t leave me.
In my case, the pain is less about the physical pain and more about the emotional strain. Yes, the physical pain leaves me stranded in my sweat-soaked sheets, glassy eyes staring at a glassy screen, but more than that, I need a wealth of emotional strength to get through the day.
I’d never before realized just how draining constant sickness can be. Before your body gives out, your mind does, and then you’re in Dublin, crying over the phone and telling your mom that it’s unfair, that it sucks, that you want it to end.
That you don’t want to spend every meal scrutinizing your plate for ingredients—gluten, dairy, onions, garlic, soy—that will send your body into a downward spiral of pain.
That you don’t want to spend another minute trying to explain and justify your restricted diet to a waiter, a friend, a coworker.
That you don’t want to be confined to the incredibly small circle of your safe spaces—the spaces where you feel well and good. That you wish you could travel to Peru, Tibet, hell, even Ireland, without succumbing to debilitating, tedious stomach cramps.
Pain is isolating. You can’t share it, and you can’t explain it. I try, with clumsy words, but the people I love, the people who care about me, have no concept of the physical symptoms I feel when my illness flares up. How can they? They have only unreliable language to go off—“stomach cramps” or “dull pain” or “under my ribs.” These words are useless things, pale imitators of reality.
The only way to endure the pain, the isolation, the frustration, is to fortify your mind and your heart. To hold everything loosely—your plans, your expectations. To know when to throw up your hands, laugh, and say, “I can’t control everything.” And to know when to call your mom and cry.
It’s not fair, not by any means. No one should have to carry a burden like this. But it’s yours, and it’s there, and it won’t carry itself.
So sometimes you lay down beside it and cry, and sometimes you barely manage to hoist it up onto your shoulder, and sometimes you run and run and it streams behind you like a flag, light and easy.
But mostly you struggle to carry it like a too-big box, your arms straining to wrap around it, and you scuttle awkwardly up the stairs, bumping into corners.