Everyday challenges with POTS

Many POTS patients report being fatigued or challenged by daily living, but what exactly is so tough? To help us get a better picture, we used the POTS Patient-Powered Survey to have 426 POTS patients rate the following activities on a four-point scale from "no problem at all" to "a huge challenge" because of POTS. Below are the results.

(Note: n=426, except for "Caring for children", where n=184 because all others answered "not applicable.")

What stands out is how challenging some everyday tasks can be. Small tasks that others barely notice (or even enjoy, like showering or cooking) are often major challenges for POTS patients. The fact that going out socially is so challenging fits with our findings of the social cost of POTS.

The toughest activities for POTSies appear to be those that involve leaving the home. This is certainly true for me, because at home I have every detail engineered to help me function. For example, I'm writing this from my massage-table-desk, with my thermostat set to my exact picky preference. I suspect that many POTSies, like me, have cobbled together numerous solutions that aren't always portable. Leaving home might also just mean spending more time upright.

These findings also highlight the enormous value that friends or family give when they help out with everyday tasks. They may not realize what a substantial gift they give when they pick up groceries or run a few errands.

We have lots more findings here, or to receive occasional email updates on new findings, you can sign up on our homepage. Be well!