My friend Amber and I sat in our usual booth after work, the scent of coffee and fried food wrapping around us like a familiar lullaby. The overhead lights cast a warm glow over the worn tabletop, illuminating the crumbs from a meal we’d barely paid attention to as we talked. This was our ritual—our sacred, stolen hour of normalcy. We vented, we laughed, we unraveled the day’s frustrations and stitched them back together with inside jokes no one else would ever understand.
It was predictable. Comfortable. Until tonight.
I reached for my medication, a motion so automatic I barely registered it. But Amber did. Instead of continuing her story, she just watched me, her hazel eyes sharp with something unspoken. Then, after a pause, she asked, “What does it actually feel like to have MCAS?”
The question landed heavier than I expected.
She knew about my illness—she had seen the bad days, the canceled plans, the way my body turned on me without warning. But this was different. She wasn’t asking about symptoms. She wasn’t asking for facts.
She wanted to understand.
For a split second, I considered brushing it off, making a joke, deflecting the way I always did. But something in her voice, in the way she leaned in like this mattered, made me stop.
If I didn’t explain it to her, to someone who truly wanted to get it—then who would ever understand?
I glanced around the table, searching for something, anything, to make her see. That’s when I noticed the small pile of change from our meal, scattered near her hand.
I scooped up the coins and let them tumble into her palm. “Alright,” I said. “You have MCAS now. These coins? They’re your energy for the day.”
She looked down at them, confused. “Okay…?”
I leaned forward, tapping one with my fingertip. “Most people wake up with an unlimited supply of energy. They don’t think about it. But when you have MCAS, every little thing costs something. From the second you open your eyes, you’re budgeting. And just so you know, a quarter is worth the same as a penny. Doesn’t matter how big it looks. Every action spends a coin.”
Her brows knit together, but she nodded.
“Alright,” I continued. “Let’s go through your day. First—you wake up.” I plucked a coin from her hand. “You didn’t sleep well. Happens a lot when your body is constantly fighting itself. Just getting out of bed? That costs you.”
She frowned. “That’s—”
“Unfair?” I supplied. “Yeah. But that’s how it is. Now, you get ready for work.” I took another coin. “Showering takes energy. And let’s say your shampoo sets off a reaction today—because with MCAS, you never really know what’s going to trigger you. That’s another coin gone.”
I flicked it onto the table, where it spun once before settling.
She was catching on now. “Wait—what if I just skip washing my hair?”
I tilted my head. “Smart. You saved a coin. But now you might feel gross all day. And if your scalp gets irritated from product buildup, you could have a reaction tomorrow.”
She let out a sharp breath. I could see the frustration creeping in.
“Getting dressed.” Another coin. “But not just any outfit. You have to think—will this fabric irritate my skin? Will I overheat and start flushing? Will this shirt trigger hives? You don’t just grab whatever’s clean.”
She stared at the dwindling pile in her hand. “And I haven’t even left the house yet.”
I met her gaze. “Exactly.”
We kept going.
Driving to work? Another coin—because stress makes symptoms worse. Sitting through meetings? That’s another one, thanks to brain fog making every conversation feel like wading through quicksand. Lunchtime? A gamble. Skip it, and your blood sugar tanks, triggering a reaction. Eat something you didn’t cook yourself? Hope there’s nothing hidden in it that could set you off. Either way, you pay.
By the time we reached the end of her workday, only a couple of coins remained in her hand.
She curled her fingers around them like they might slip through the cracks. “So I can either go grocery shopping or see my friends. But not both.”
I nodded. “And if you push yourself and spend coins you don’t have? You’re borrowing from tomorrow. But tomorrow’s going to be even harder.”
Her breath hitched. She stared down at the few sad coins left in her palm, as if finally seeing them for what they were.
Then, suddenly, her expression twisted. Anger. No—not just anger. Fury.
“This is bullshit.” Her voice was sharp, edged with something raw. “You do this every single day?”
I exhaled, slow and steady, then reached into my pocket and pulled out a single dime—one I had kept hidden. “You learn to keep an emergency stash,” I said softly. “You plan. You get strategic. And sometimes…” I let the dime glint between my fingers before setting it down, “you just accept that you can’t do everything.”
She stared at me, and for the first time, I saw something shift in her eyes. Not pity. Not surface-level sympathy.
Understanding.
Amber let out a slow, shuddering breath. Then, without warning, she reached across the table and grabbed my hand, squeezing it so tightly I could feel her pulse against my skin.
“This isn’t fair,” she whispered. Her voice cracked. “It’s not fair, and I hate it.”
I swallowed the lump in my throat. “I know.”
Her grip didn’t loosen. If anything, it tightened.
“I wish I could give you some of my coins,” she murmured.
I blinked. Looked away. Breathed through the sharp sting in my chest.
“You just did,” I said. "As much as anyone can, anyway."
And for the first time, I knew she truly understood.
