swallowed up
On chronic pain, nightmares, and the tyranny of silence.
i.
“What are the tyrannies you swallow day by day and attempt to make your own, until you sicken and die of them still in silence” - Audre Lorde
I used to have a recurring nightmare where my words would swell in my throat, becoming a tangled mess I couldn’t dislodge, no matter how desperately I clawed at my neck.
The setting of the dream was always the same: my mother, sister, and I would be gathered in my childhood home. Sunlight streamed through the kitchen window, casting a golden glow on my mother's back as she meticulously braided my sister's hair. The gentle click-clack of the hairbrush against my sister’s strands was a comforting rhythm amidst the general sounds of a happy home.
At some point, the scene would be disrupted by a grotesque shadow flickering across the windowpane. In the dream, I whip my head around, heart pounding in my chest, only to discover monstrous figures, their forms shifting and warped like creatures from a fever dream, descending upon our house. The dream version of me is panicked at the realization; I have to warn them, to scream for them to run, to hide – anything. But when I try to speak, only a strangled gasp escapes my lips. The warning is trapped, a thick knot lodged in my throat. In the dream, I try to frantically dislodge the barrier, but it isn’t solid enough. I can’t swallow it. I can’t spit it out. I can’t rip it from my throat with my fingers. I can only panic as danger creeps closer, and I am unable to cry out.
ii.
“I was going to die, if not sooner, then later, whether or not I had ever spoken myself” - Audre Lorde
I don’t talk about it much, but I have a chronic autoinflammatory condition. I inherited it from my mother.
HS is a fickle beast. One day I can conquer a hike with my friends (I would never actually do that. I’m not outdoorsy, but there are days when it is technically possible). The next day I'm reduced to a shivering mess on the couch. These "flares," as I call them, are like unpredictable storms rolling through my body. There's no warning, just a slow creep of fatigue that morphs into the kind of excruciating pain so profound and brain fog so thick, that I can hardly string a sentence together.
I never quite feel well. Even on good days, there's always a low hum of discomfort reminding me that the shitstorm could return at any moment. This constant uncertainty takes a toll. The frustration of canceling plans, the guilt of calling in sick at work, it all builds up. There's a fear that has become my unwelcome companion – the fear of what my pain might take from me next time.
But the worst part is how much of my experience that no one sees but me. It's a sucker punch to the gut every. damn. time. someone questions why I gotta crawl into bed at 5:30 in the afternoon or suggests I just "power through" a flare-up. Like they have any clue about the invisible war raging inside me.
"But you seemed fine yesterday!" Seemed. Seemed. That "seemed" cuts deeper than folx will ever know.
Let's stop normalizing being dismissive of each other's pain. Because trust me, all the judgments, having to qualify and quantify your experience, gaslighting yourself into thinking “well damn, maybe it actually isn’t that bad…’ – it's enough to make you want to scream. But you can't, because people will judge you for that too. So instead, you swallow it down, another casualty of the war.
I tried really hard to hide the depth of my condition from everyone. Including my husband. It worked for years, a carefully constructed facade of strength, and that allowed me to maintain a sense of normalcy. Then came the trip to Africa. Côte d’Ivore, the dream family vacation we'd been planning for years. Except 48 hours after we landed, my body decided to rebel. A monstrous flare descended, the likes of which I'd never experienced. The Motherland blurred into a haze of pain and exhaustion. Simple tasks like driving down unpaved roads, or finding food became insurmountable challenges. Fear choked me – fear of infection, fear of collapsing in a foreign country, fear of choking on the knot of swallowed symptoms in front of my husband.
But the truth was unavoidable. There was no "other room" to retreat into and nurse myself back to health. I became utterly dependent on my husband, relying on him to translate with doctors, navigate unfamiliar pharmacies, and hold me together when the pain threatened to drown me. I had to let him nurse me back to health. The silence I'd clung to for so long had backfired, leaving me vulnerable and isolated at a time when I needed him most. It was a turning point. In that crucible of sickness and fear, a new kind of intimacy was forged between us – one built on vulnerability and shared struggle.
iii.
It's amazing the lengths we go to in crafting an image of ourselves – strong, independent, unburdened. We swallow anxieties, downplay limitations, and retreat into self-imposed solitude, all to avoid being seen as a "burden." And it’s not just me.
We all carry our own invisible monsters – chronic illnesses, anxieties, past traumas – and often, the silence we build around them creates a chasm that isolates us more than it protects us. The pressure to maintain a facade of strength is immense. Studies show that people with chronic pain are at least twice as likely to experience depression or anxiety compared to those without chronic pain1, and a recent study from the University of Arizona Health Sciences found that nearly 1 in 20 adults in the U.S. experiences both chronic pain and clinically significant symptoms of anxiety or depression2. This constant pressure to curate a positive image, both online and off, can contribute to feelings of inadequacy and social isolation in real life. But the silence goes beyond social media. Fearing judgment, we bottle up our struggles, further isolating ourselves.
It wasn't until I was well into my thirties that I stumbled upon the powerful words of Audre Lorde. Here I was, a whole grownup navigating the complexities of life with a chronic condition, and yet, a part of me still felt like that little girl in my recurring nightmare – voiceless and unseen. Then, I discovered "The Cancer Journals" and a wave of recognition washed over me. Lorde's unflinching honesty about her battle with cancer resonated deeply. She wrote not just about the physical struggles, but the emotional turmoil, the silencing fear – all the things I'd spent years swallowing.
My nightmare, with those shadowy monsters lurking at the edges, feels like a weird prophecy now. It wasn't just my stupid illness I kept hidden. It was all the tough-to-explain experiences woven into the fabric of my being – all the joys, the heartbreaks, the insecurities I'd tucked away for fear of burdening others.
The anxiety that choked me into silence sometimes. The student loan mountain that felt too shameful to breathe about, especially considering the fact that I never got the degree. The betrayals and traumas that sliced at me, leaving me unseen and unheard. These were the battles I fought in the dark, the fears I swallowed whole, the burdens I carried alone. I had mastered the art of talking without ever really saying anything, skating over the depths of me. Terrified to take up space and admit just how much everything freaking hurts sometimes. Even the good stuff.
But just like those monsters in my nightmare, these demons lose their power when dragged into the light. The blockage in my dream wasn't something tangible, it was the barrier of silence itself. Swallowing my voice, my fears, my pain – that's what gave the monsters their power. And the key to getting rid of them? Stop. Swallowing. Stop it all.
Think about a time you kept something bottled up – a difficult conversation, a hidden struggle, a dream you were afraid to chase. Did the silence make it easier? Or did it fester, growing heavier with each passing day?
There’s been a prompt going around the Substack Notes asking ‘who do you write for?”. The realest answer I can give to you is that I write as an act of devotion to the little girl in me who once felt unseen, and to all the folx I've ever been or will be. Because using my voice has banished more darkness, and slain more monsters than my silence ever did.
Love yall. Mean it. If you love me back, Buy Me A Book!
The National Institute of Mental Health (NIMH) states that people with chronic pain are at least twice as likely to experience depression or anxiety compared to those without chronic pain. (https://my.clevelandclinic.org/health/articles/9288-chronic-illness-and-depression)
I feel all of this, literally. There are days when I can barely get out of bed. My husband is amazing. My core group of friends are very understanding. Those that were not have been allowed to drift away, no hard feelings.
Me and this body don’t like each other, but we’ve called a truce, and I try to listen to her. But sometimes. She don’t keep her end of the bargain. Sigh.
This one hits different today as I experience a flare that actually stopped my plans for the day...*deep sigh* I am grateful for these words.