Finding your feet, through your words.
How to explain POTS to those that matter most.
It can be an exhausting thing, carrying an invisible weight that the rest of the world doesn't see. When you live with POTS (Postural Orthostatic Tachycardia Syndrome), your body is playing by a set of rules that others might not understand. You might look perfectly fine on the outside, while on the inside, your heart is running a marathon just because you’re standing in line, eating a meal, or walking through a warm room.
If you’ve found yourself struggling to find the words to explain why you’re suddenly breathless or why you need to lie down after lunch, I invite you to remember: You are not being difficult. You are narrating the needs of a nervous system that is working very hard to manage its resources.
The Autopilot & The Blood Volume Gap
Sometimes, the hardest part of POTS is the medical jargon. I invite you to use the Autopilot metaphor when talking to those who don't live in your body, focusing on the idea of Resource Management.
"Imagine your body has an 'autopilot' (the autonomic nervous system) that handles everything you don't think about—like your heart rate, digestion, and temperature. For me, that autopilot has a glitch in how it moves blood around. Whenever my body needs extra blood flow—whether that's to stand up, to digest a meal, or to cool me down in the heat—the blood tends to pool in my lower legs instead of returning to my heart.
It’s like the heart is calling for a delivery of blood to perform an essential task, but the 'delivery truck' is stuck in traffic in my feet. My heart then has to beat much faster just to try and make up for what's missing. It’s not just about standing up; it’s about any time my body needs its 'fuel' to be in the right place at the right time."
Why It's More Than Just Posture
I invite you to reflect on how these different "calls for blood" might feel in your own body:
Digestion: After a meal, the body sends blood to the gut to help process food. For someone with POTS, this can leave the rest of the system running on empty, leading to intense fatigue or dizziness.
Heat Management: When we get warm, the body sends blood to the skin to cool us down. If that blood is already pooling in the legs, the heart has even less to work with, which is why summer or hot showers can feel so taxing.
Hydration: Dehydration means lower overall blood volume. When the tank is already low, the pooling in the legs becomes even more noticeable.
Finding Your Words: Scripts for Your Inner Circle
Sharing your experience is an act of vulnerability and connection. Here are some gentle ways to bridge the gap:
For Friends: The Environmental Check-in
The Script: "I’d love to go for that walk, but since it’s quite warm out, my POTS is likely to flare. My body struggles to cool itself down because it can't move blood effectively in the heat. Could we find a spot with some strong AC or a place where I can keep my feet up while we chat?"
For Family: The Post-Meal Grace
The Script: "You might notice I get really tired or 'foggy' right after we eat. My body is currently sending all its available blood to my stomach to digest, and because of my POTS, it’s struggling to keep enough blood in my brain at the same time. I might need to go lie down for twenty minutes to help my system recalibrate."
For the Workplace: The Capacity Conversation
The Script: "To stay productive, I have to manage how my body uses its blood volume. On days when I’m dehydrated or if the office is warm, my heart has to work much harder to keep me focused. Having a desk with leg elevation or being able to work from a cooler space allows me to keep that 'gravity tax' low so I can give my full attention to my tasks."
An Invitation to Reflect
As you navigate this journey, I invite you to sit with these questions:
Do I notice a pattern in when my heart feels like it's racing—perhaps after meals or on humid days?
How does it feel to acknowledge that my fatigue is a physical response to a delivery delay'in my blood flow?
What is one small way I can support my autopilot today (compression garments, extra salt, a cooler room, or a seated task)?
Resources & Support
You don't have to navigate the complexities of POTS alone.
Explore our POTS Resources Hub: Discover more tools for chronic illness advocacy and nervous system care.
Find Your New Footing: If you’d like to explore somatic techniques for managing POTS-related anxiety or navigating life with a chronic condition, I invite you to reach out to Book a Telehealth Session. Together, we can map out the scaffolding your body is asking for.
