Living With POTS: An Honest Companion

For most people, standing up is nothing, a movement so automatic it never registers. For someone with POTS, it can be the hardest part of the day: a racing heart, dizziness, a grey swimming feeling, the sense that the body simply cannot keep up with the act of being upright. And because they look perfectly well, the struggle is easy for others to miss.

This is a companion piece for people living with POTS and those trying to understand it. It is not medical advice. It is an honest account of what the condition is actually like and what people have found helpful, drawn from many who live with it.

What POTS actually is

POTS stands for postural orthostatic tachycardia syndrome, which is a precise way of describing a frustrating experience: when a person stands up, their heart rate climbs excessively, and they may feel dizzy, lightheaded, shaky, or exhausted. It is a form of dysautonomia, a problem with the automatic nervous system that quietly runs things like heart rate and blood flow. Symptoms can include palpitations, fatigue, brain fog, headaches, nausea, and fainting or near-fainting, and they often worsen with heat, standing for a long time, or after meals. It disproportionately affects younger women, and it is more common than many clinicians once assumed.

The long road to a name, and the long-COVID link

People with POTS often describe being told it was anxiety, or being passed from specialist to specialist, before getting an answer, sometimes after a simple test of heart rate and blood pressure on standing. Awareness has grown in recent years partly because POTS-like symptoms have turned up in some people after viral illness, including COVID. That overlap is something our companion piece on long COVID explores, and many readers recognise the shared territory of post-viral exhaustion and a body that no longer behaves predictably.

What people find helps

There is no single switch that turns POTS off, but many people find a combination that genuinely improves daily life. A surprising amount centres on the basics done deliberately: increasing fluids and, for many, salt intake under medical guidance, wearing compression garments, and rising slowly. Carefully graded exercise, often starting with recumbent or seated forms and building gradually, helps many people over time, though pushing too hard too soon can backfire. Some people are prescribed medications that help with heart rate or blood volume, decided with a clinician. The recurring lesson is that progress tends to be slow and non-linear, and that a knowledgeable doctor and patience matter more than any quick fix. None of this is a prescription for you; it is the territory others have explored with their own clinicians.

The invisible weight

What outsiders rarely grasp is the unpredictability and the fatigue, and the strain of looking healthy while feeling unwell. People describe planning their days around how long they can be upright, the frustration of being doubted, and the toll on work, study, and relationships. That experience is one our piece on living with an invisible illness speaks to directly, and the deep fatigue echoes what many describe in fibromyalgia. Finding others who understand, and clinicians who take it seriously, is something contributors return to again and again.

If it would help to hear from others who know it from the inside, our anthology Standing Up to POTS: POTS Living Stories gathers fifty first-person accounts of living with the condition. You can also explore more in our Chronic & Invisible Illnesses collection.

This article is a companion, not medical advice. It reflects experiences people commonly describe; everyone is different. For diagnosis and treatment, including any change to fluids, salt, or medication, please speak with a qualified clinician who knows your history.