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.
10 Responses
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My daughter has suffered from this for 4 yrs. Her husband and 2 sons have suffered along with her. My grandsons football team thought he was lying when they his mother walk one day next she was in ER . She is probably crying right now reading your loving article.
This is so my life. I feel like the forgotten person and I’ve become a recluse. Let’s add insult to injury, my daughter is a nurse and she says it’s just anxiety. she used to go to doctor appointments with me, until my medical history became to complex and I was referred from one specialist to another without getting any clear diagnosis. Thank you for sharing is added sunshine to a gloomy day!
I started crying when I read this. Thank you so much.
I’m sitting in my community clubhouse unable to last more than 10 minutes outside watching my kids swim in the pool. In these moments when I’m so tired of not being able to fully participate like I once could, I get angry and sad. And feel guilty. And then I read stuff like you just wrote and it’s a kiss from God. Thank you for so accurately depicting what it feels like every single day. It made me cry.
I cry while i read, all the things you say and the sadness and the feeling of failure all the time, its so tired, and sometimes i feel so alone, even when my family are behind me. I miss how i use to be, before being sick. And i used to think that all this symptoms will dissapear, and some day my old me would return. But that doesnt happen. And i am understanding now that this is something permanent and its really hard.
thank you, for writing all that i feel. And at the same time, make me feel that its not only me. And the all the days that i think i cant resist more.
thank you so much for this.
Have been fighting with this since my 20’s, and now I’m turning 69 in a few weeks. Wonderful article! The toughest part is not knowing when and what will pop-up next, and friends and family not really understanding what is going on simply because you “look okay.” I’ve learned to put a smile on my face during the worst pain in my life. Get tired of fighting as one gets older though.
Reading this from Adelaide, South Australia, after surviving a really tough first day of a week-long workshop that is so important to me, and finding through pure chance a fellow dysautonomia pal who spotted me squatting on the floor pretending like I was okay… She made me feel so heard and seen, and we bonded over similarities, while I sat on the floor, then later held onto the lab bench, smiling away while bearing the discomfort and worsening coathanger pain through a spinning world.
I am grateful to know I am not alone.
Thank you for writing this… I did indeed read it while wrapped up in a blanket.
For the FIRST time in two years I feel seen and heard, even though I’ve never met any of you! My mysterious symptoms started after “recovering” from a brain bleed I suffered as the result of a head injury. While all the doctors provided life saving treatment, my “life” mentally, physically and emotionally was turned upside down with no explanation as to why and no real follow up treatment suggested except for the usual physical therapy and “time to heal”. I feel like I’ve lost my identity but it is impossible to explain to others or for them to understand even though they love and support me. I’m just not who I used to be and I miss ME! Reading all these things today fills me with gratitude and hope because it feels like I have a brand new family. Thanks to who have written and shared their frustrations.
Thanks for the opportunity to read about the similar experiences of others and for the much needed encouragement.
This is a wonderful article; it says so much of what I’ve been through.
When I read the part where you wrote that 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. The only difference is when I get a new symptom or a symptom gets worse, I’m on Google trying to find answers. Thank you!