Living With POTS: When Your Body Stops Doing What It’s Supposed to Do

For many people, POTS doesn’t arrive with a clear explanation or a clean diagnosis. It often shows up quietly at first—feeling lightheaded when standing, suddenly exhausted for no obvious reason, struggling to think clearly, or noticing your heart racing when you’re just trying to get through the day. And then, slowly or all at once, life starts to feel harder than it used to.

Postural Orthostatic Tachycardia Syndrome, or POTS, is a condition that affects the autonomic nervous system—the part of the body that’s supposed to run in the background, keeping things like heart rate, blood pressure, and circulation balanced without you having to think about it. When that system isn’t working properly, everyday activities can begin to feel overwhelming.

When Standing Becomes a Struggle

One of the defining features of POTS is what happens when a person stands up. Instead of the body smoothly adjusting, the heart rate jumps—sometimes dramatically. People often describe feeling dizzy, shaky, breathless, or as though they might faint. For some, it’s subtle. For others, it’s frightening and disruptive.

What makes POTS especially difficult is that the symptoms are often invisible. On the outside, someone may look fine. On the inside, their body feels like it’s constantly fighting to stay upright and alert.

More Than Just Physical Symptoms

POTS doesn’t affect just one part of the body. It can touch nearly every aspect of daily life. Fatigue can be profound, not the kind that improves with rest. Brain fog can make it hard to concentrate, remember words, or stay focused. Heat intolerance, digestive issues, headaches, and exercise intolerance are also common.

And then there’s the emotional side.

Many people with POTS describe a deep sense of frustration—grieving the energy they used to have, the routines that now feel impossible, or the version of themselves they no longer recognize. There is often fear, too: fear of symptom flares, of not being believed, of pushing too hard and paying for it later.

“It’s Probably Just Anxiety”

One of the most painful experiences for people with POTS is being dismissed. Because symptoms overlap with anxiety—racing heart, dizziness, shortness of breath—many individuals are told that stress or panic is the cause.

While anxiety can certainly coexist with POTS, it is not the root of the condition. In fact, repeatedly being told that nothing is wrong can create anxiety where there wasn’t any before. When your body keeps sending distress signals and no one has answers, self-doubt can creep in.

Being believed matters.

How POTS Often Begins

Many people with POTS can point to a moment when things changed—a viral illness, surgery, pregnancy, physical trauma, or a season of intense stress. Others don’t have a clear starting point. What they often share is the experience of going from feeling relatively normal to suddenly having to rethink how they move through the world.

POTS is most commonly diagnosed in women, particularly in adolescence and early adulthood, though it can affect anyone.

Learning to Live in a Different Rhythm

There is no single cure for POTS, but many people do find ways to manage symptoms and improve quality of life. This often involves a combination of medical treatment, lifestyle adjustments, and learning to work with the body rather than constantly fighting it.

That can mean slowing down, hydrating more intentionally, wearing compression garments, or reintroducing movement gradually. It also means learning to rest without guilt—something many people struggle with deeply.

Living with POTS often requires redefining what strength looks like. Strength becomes listening to your body. It becomes pacing instead of pushing. It becomes advocating for yourself, even when it’s uncomfortable.

The Importance of Support

POTS can feel isolating, especially when others don’t understand why simple tasks take so much effort. Support—both medical and emotional—can make a profound difference. Having providers who take symptoms seriously, friends or family who listen, and spaces where experiences are validated helps reduce the loneliness that often accompanies chronic illness.

Mental health support can also be an important part of care—not because symptoms are “in your head,” but because living in a body you can’t fully trust is emotionally exhausting.

A Gentle Invitation

If you’re living with POTS, you don’t have to navigate this alone.

Living with a chronic condition can take a toll not just on the body, but on your sense of safety, identity, and emotional well-being. Therapy can offer a space to process grief, fear, frustration, and the ongoing stress of managing an unpredictable illness—without judgment or pressure to “stay positive.”

If you’re looking for support, working with a therapist who understands chronic illness, trauma, and mind-body connection can help you feel more grounded, validated, and supported as you learn to live in this new rhythm.

If this resonates with you, I invite you to reach out to schedule a consultation or explore whether therapy might be a helpful part of your care. You deserve support that sees the whole picture—body, mind, and lived experience.