What You See Isn’t Always the Whole Story
The Messy Reality Behind the Highlight Reel
Living with a chronic illness - especially one that doesn’t announce itself with a cast, a cane, or dramatic music - means people often make assumptions. They see a photo of me smiling at a dinner or if I’m lucky enough, playing a small concert and think, “Oh good! She’s better!”
Spoiler alert: I’m not. That was just a two-hour window of not-feeling-like-a-wet-dishrag, followed by three days of my body staging a full-blown protest.
What they don’t see is the crash that follows. The seizures. The days when I can’t walk or sit up. The moments when David has to carry me because my leg suddenly decides it's gone on strike. The full-body fatigue that no amount of sleep, supplements, or “positive vibes” can fix.
They don’t see the hours spent lying in a dark room, the migraines that make words feel like sandpaper in my brain, or the constant, silent battle my immune system is waging like a tragic opera where the soprano gets stabbed, poisoned, and heartbroken - but still belts out a high C before she dies. Twice!
But here’s the thing: when I do get a rare burst of energy, I want to live in it. Really live. I want to go to that gala, play that one concert, dress up and feel like a princess who temporarily forgot she has gremlins living in her nervous system. I want to surround myself with beautiful violins and talk about something other than doctors and symptoms.
Because in those fleeting moments - I feel like me again. Not “patient me,” not “can’t-get-out-of-bed me.”
Just… me.
Do I always overdo it? Oh yes. Will I crash hard afterward? Absolutely. But those moments don’t mean I’m not sick. They mean I’m still living. Still choosing joy. Still finding bits of light in all the dark corners.
Social media, of course, captures the highlight reel. The filtered frame. The pretty dress, not the ice pack tucked under the table. And the problem is, people take those snapshots and run with them. “She was out last night - she must be fine now!”
(Dearest reader, she was not fine.)
Before you make a judgment about someone based on their "one night out" or "perfect post," take a second. That might be the only moment they’ve had in weeks when their body let them feel something close to normal. Maybe they pushed through pain you’ll never see just to be there. Maybe they’ll spend the next several days recovering from what looks like a casual evening to you.
We don’t need pity. But a little awareness? A little compassion? Goes a long way.
To the ones who do see the full picture: thank you.
To the caretakers who witness the behind-the-scenes chaos and love us through it anyway - thank you.
And to David: THANK YOU for being the one who carries me when my legs check out, the one who holds my hand through the storms, and the one who never, ever asks, “Are you sure it’s not just stress?” You are my hero!
And to anyone else out there navigating life with an invisible illness: I see you. You don’t have to defend your good days or apologize for your bad ones. You’re not imagining it. You’re not exaggerating. You are doing your absolute best. And that is more than enough.
Because sometimes, what’s visible isn’t the full story.
Sometimes, what we’re handed wasn’t even in the script.
And this part?
Well… this part wasn’t in the score.