What You Can’t See: The Hidden Struggles of Living with POTS
Postural orthostatic tachycardia syndrome (POTS) is an invisible illness. To the outside world, someone with POTS might appear perfectly fine—standing in line at the grocery store, sitting quietly at a desk, chatting at a social gathering—but what’s happening inside their body tells a very different story.
That person standing in line may look calm, but their blood is pooling in their legs, leaving too little circulating to their heart and brain. You can’t see the lightheadedness or fatigue building with every passing minute.
Your colleague, employee, or classmate may appear focused—but you can’t see the brain fog they’re battling, trying to push through as their brain struggles with limited blood flow.
At a social gathering, your friend or loved one might look like they’re simply standing and smiling—but you can’t see the rapid heart rate or the immense effort it may take just to hold a conversation.
Behind closed doors, many people with POTS are spending hours each day focused on hydration, salt intake, and medication management. It can feel like a full-time job just to stabilize their symptoms. You won’t see the slowed digestion that brings intense abdominal pain, nausea, or unpredictable gastrointestinal (GI) symptoms. And you likely won’t notice how much they are bracing themselves for the energy crash that might come tomorrow from today’s activities.
When symptoms do show—when someone needs to sit or lie down, cancel plans, use a mobility aid, or pause mid-sentence—they’re not exaggerating. They are simply doing what they need to survive.
POTS affects everyone differently. Some people are able to work or study with modifications; others are housebound or even bedridden. Symptoms can vary drastically day to day. POTS is a condition that defies predictability and thrives in invisibility.
This blog post only scratches the surface of what POTS can look like. The truth is, so much of it is unseen—but it is deeply real. And for many, it is devastating.
If someone tells you they have POTS, believe them. Support them. And know that what you can’t see is often what they’re working hardest to manage.
Want more tips?
Subscribe to Dr. Gould’s Neurenity Notes Newsletter—a free, supportive newsletter filled with ideas and strategies for navigating life with POTS and other forms of dysautonomia, delivered to your inbox on a regular basis.
Download the Mini POTS Toolkit—a free guide created by Dr. Gould that breaks down frequently overlooked POTS symptom triggers and tools for managing them with confidence.
Disclaimer: This blog post is for informational purposes only and shall not be construed as behavioral health or medical advice. It is not intended or implied to supplement or replace treatment, advice, and/or diagnosis from your own qualified healthcare provider.