Join River for an exploration of POTS, examining what it means to live in a body that responds with intensity and the stories we tell about chronic illness. This episode offers a grounded space for navigating sensitivity, pacing, and embodied healing.
RESOURCES + LINKS MENTIONED IN THIS EPISODE:
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Disclaimer - The content of this podcast is for educational and informational purposes only, and does not constitute medical advice, diagnosis, or treatment. Always seek the advice of your qualified healthcare provider with any questions you may have regarding a medical condition. River Marshall: After Eli’s tilt-table test, my 16-year-old son looked at me and asked, "What does it mean to have POTS? Like, what is my life actually going to look like?"
And just for some context, my son and I are both autistic. He wasn’t asking me for a pamphlet, he was asking me to say the thing that everyone thinks and no one says out loud. To name what was alive in the room.
And this is literally my day job. I’m a clinical herbalist and I’ve had this conversation with people for years. It should have been a parenting moment where I really shined, and instead, I totally fumbled it. I couldn’t say it.
Because the only story I had about POTS wasn’t a pretty one, and it didn’t end well.
And in that moment, when he asked that question, I realized that I had accepted a story for myself that I would never believe for him.
I’m River Marshall, and this is Sanctuary Medicine.
Today, what it actually means to live in a body that meets the world with intensity and the story I wish I’d had ready for him.
A quick word before we begin. This podcast is for education and conversation. It isn’t medical advice, diagnosis, or treatment, and it doesn’t replace your care team. If you take medication, talk with your prescriber before you add or change anything, herbs included. Friend, your safety and health are precious to me. Bring what you learn here back to the people who know your whole story.
Here’s what I’ve learned since that day: The stories we’re handed about chronic illness and disability are ugly, and we absorb them by osmosis long before we get to decide for ourselves if they’re true.
Part of healing is noticing which story you’re already living inside.
And if you’re also living with a chronic illness, here is the one I’m writing instead. So, these are the three truths that guide my story now.
The first is that you will learn to live inside the limits of your body—the one you actually inhabit and not the one you wish you did. And it looks different than you think. It isn’t giving up, disappearing yourself, or living smaller - it’s making your life accessible to you.
This looks different for all of us and is likely going to require some creativity, but the first step is learning to live inside your body by doing an environmental audit. You’re going to have to point to the places where you’re leaking energy, where life is hard, and figure out how to reclaim it.
So, for example, I live off-grid in the forest, and you have to hike from the road into our hollow and across a stream to get to my tiny cabin. And you’d better believe I have a gazillion cute little benches along that hike—like, they’re literally every 10 to 15 feet. And some of the things that are going to make your life more accessible, they may not be as big as having—having benches every 10 feet. I firmly believe that one of the most underrated POTS accommodations is a chair with an ottoman so you can put your feet up. Also baskets. Something my POTS coach asked me to do when I was first diagnosed was to have baskets everywhere I sat down with my supplements and some water, some non-perishable snacks, and maybe something to keep me entertained like a journal or a kindle. Baskets have become, hands down, my favorite chronic illness hack.
So, while we’re talking about building an accessible life, people ask me all the time if they need a mobility aid. And the math around this is so easy. Is your life shrinking? Yes? Then you need more support. That could be a person—we’re allowed to need one another—but most likely it’s a thing. And there are so many things out there, but most of us feel like we need permission to use them, to take up that space. So here’s your permission - If there is a device that would make your life better, use it.
The other thing is that we get tangled up in the fear of being visibly disabled. I get caught on that fear sometimes, and this is what I say to myself: The life you’re dreaming of, it’s on the other side of your fear, and sometimes we have to do it afraid. So do it anyway.
So the foundation of my story about living with POTS, MCAS, hypermobility is that you have to create an accessible setting. It took me an embarrassingly long time to learn this truth.
All right, my second truth. Your boundaries are now your capacity. Be a fierce guardian of your energy. What I’m really saying here is that pacing is your new boundary. Pacing is the container that holds your life.
So, if you haven’t ever been exposed to this, um, I teach a red-yellow-green framework to all my clients, and here’s the quick and dirty version. Red are your flare days. I don’t have to introduce you to your own flare days, like, you’re already intimately acquainted, right? On red days, you’re walking out your flare plan—because you have one, and if you don’t, drop into the show notes because I have a link to my workbook on creating one. Okay, red days, easy enough.
Green are your best days, when everything is easy. Here is the best-kept secret about your green days: In your green days, you’re only using 70%percent of your capacity. You’re saving some of your energy, just like you grow a savings account, for healing and those unexpected energy expenses.
So how do you know what 70 percent is? You time yourself doing basic tasks. When you get tired, you’ve hit the end of your capacity. So, whatever 70%percent of that is, that’s what your actual energy budget is.
Yellow is the space we build in between green and red days so that you aren’t cycling through crashes, and it’s really where the magic happens. So on yellow days, you’re using all your tools, right? You’re taking extra supplements, you’re resting more, um, you’re eating foods that you know don’t nourish you.
And because these boundaries shift like quicksand, you check on them daily, without shame, right?
Okay, so here is my third truth: You need your own grimoire. A grimoire is a book of practical magic of what actually works.
And I wrote a book called The Nervous System Grimoire:- Spells for Dysautonomia, a Clinical Herbalist’s Whimsical Guide to POTS, MCAS, Hypermobility, and Living with Chronic Illness. And I wrote it to be cheeky. So much of living with chronic illness is heavy and is hard, and I wanted to invite my people to come do the deep work and play with me. But as I was writing it, I realized that we all need a safe place to retreat to. We all need a recipe book, a toolkit for staying with yourself. I literally wrote my own and then sent it out into the world as a gift from my body to yours.
And I did that because I abandoned myself so much in my twenties and in my early journey with chronic illness. I had pushed through instead of pacing; I compromised my well-being for access to spaces that made me sick. The grimoire is how I stopped and rewrote my own story around dysautonomia and disability, and I think we all need some version of that.
Okay, so the last thing—the last piece of my story—it may be the most important. You will need to not flinch, even when everyone else in the room does. Your body and your symptoms may be loud; they may even be screaming. When that happens, you need to know that flares are data, symptoms are data—they’re not failure. Don’t moralize something that is honestly neutral. And I’m saying this because there are going to be times when you realize that we attach a lot of meaning to bodies and especially to chronically ill bodies. Right? Okay.
So if Eli asked me again today, "What does it mean to live inside chronic illness?" I tell him, it means learning the shape of your own body, and I’ll be right here while you do.
Sanctuary Medicine comes to you from Feral Hollow in the Blue Ridge Mountains. If you’d like to work together, there’s a low-spoons form on the site so you never have to get on a call. But be gentle with your body, and I’ll see you next week.