There’s a kind of grief that comes with living in a body that doesn’t look sick but feels like it’s always fighting. A kind of ache in your soul when you’re trying your best to show up for the world—but your body just… won’t. When you live with something like POTS or any form of dysautonomia, you quickly learn it’s not just the physical symptoms that are hard. It’s invisibility. The explanation. The justifying. The being misunderstood.
I’ve had days where I smiled through conversations while the room tilted around me. Days where I nodded along in group settings, heart pounding, vision going black, because I didn’t want to be the “girl who’s always tired” again. There are moments I’ve walked into a store and had to turn around just minutes later because my legs were trembling. No one sees the three-hour nap I had to take after running one errand. No one sees the mental gymnastics it takes to stand upright when your nervous system is malfunctioning. And no one sees the guilt. The guilt of canceling plans again. The guilt of needing help. The guilt of simply existing in a body that demands rest in a world that glorifies hustle.
The Disconnect That Hurts So Deeply.
There’s a particular kind of pain that comes when you try to explain what’s going on inside your body and someone responds with, “But you don’t look sick.” I know they probably mean well. But it lands like a punch to the gut. Because yes, I put on mascara today. Yes, I’m wearing a cute outfit. Yes, I’m smiling. But underneath it all is a body that’s fighting for balance, a mind doing its best to hold it together, and a heart that feels heavy from being misunderstood so often. It’s hard to articulate the loneliness of it all. Of being surrounded by people who love you—but still not feeling fully seen. Of navigating conversations where you downplay your symptoms because you don’t want to come off as dramatic. Of quietly grieving the version of life you imagined before you got sick.
But You’re Not Alone in This. I want to say this loud to anyone who needs to hear it:
You are not too sensitive. You are not exaggerating. You are not lazy, weak, or broken. You are carrying something that most people will never understand—and you are carrying it with so much grace. You are not the only one who’s googled symptoms at 2 a.m., curled up in pain wondering if anyone else feels this way. You’re not the only one who has cried after a doctor’s appointment where you didn’t feel heard. You’re not the only one who’s worried that the people you love are tired of hearing about your illness.
There are so many of us out here, quietly surviving in bodies that don’t follow the rules. You’re not alone in your fear. Your frustration. Your fatigue. And you’re not alone in your hope, either.
There Is Hope In the Soft Moments!
Hope doesn’t always show up as fireworks or huge milestones. Sometimes it’s soft and small and steady. It’s when you drink water before your heart rate spikes. It’s when you make it through the day without needing to lie down. It’s when someone looks at you and says, “Take your time, I understand.” It’s when you give yourself permission to rest without guilt. Hope is your body healing in invisible ways. It’s the moment you find a community of people who get it. It’s the kindness of strangers, the comments on a blog post that say, “This made me feel seen.” It’s you reading this and knowing that even if your illness is invisible, you are not.
A Love Letter to the Ones Who Feel Unseen.
If you’re sitting in your bed today, wrapped in a blanket and wondering if you’ll ever feel “normal” again—this is for you. If you’re questioning your worth because you can’t do everything your peers are doing—this is for you. If you’ve ever felt forgotten, or too complicated to love, or like your illness defines you—this is for you.
You are not your symptoms. You are not your diagnosis. You are not a burden. You are brave for getting up each morning in a body that doesn’t always cooperate. You are strong for speaking up when doctors didn’t listen. You are soft and kind and so deeply worthy of care, of friendship, of love that doesn’t run away when things get hard. And no—people may not always understand what you’re going through. But that doesn’t make your experience any less real.
We Keep Going, Together!
I used to think I had to wait until I was “better” to start living. But healing isn’t a finish line—it’s a path, winding and unpredictable. And along that path, we get to collect people who understand us. We get to learn how to care for ourselves in new ways. We get to rewrite the definition of strength.
Some days, all we can do is just exist—and that is enough. Some days we thrive, and other days we just try. But through it all, we continue. With courage, with compassion, and with a whole lot of heart.
So keep going. Drink your electrolytes. Take the nap. Say no when you need to. And never, ever feel guilty for honoring what your body needs. Because your life still holds so much beauty, even in the pauses. And you are never, ever alone in this.
Thank You to Our Guest Blogger:
This article is written by Rylin Rossano, Host and Founder of "Take Care of Your Body by Ry" podcast, and dysautonomia warrior.
