We were curious how big an impact POTS has on patients, and to see which aspects of life are most impacted. The POTS Patient-Powered Survey asked:
Overall, how much is POTS affecting...
The answer choices were "it's not a factor", "it's a minor nuisance", "it's a moderate challenge", "it's a big challenge", and "it's a huge detriment." 397 POTS patients responded as follows:
The most striking findings were the high ratings across the board for POTS being "a big challenge" or "huge detriment." The effects for schooling/work/career and financial impact were particularly severe. This may not be surprising given our findings on work, where a majority of our respondents answered that they were unable to work or attend school, even part-time.
At any rate, there is no denying that while many of us might be trying to "just get over it," POTS strongly affects many parts of our lives. Our findings about everyday tasks provides more insight into why POTS is a constant challenge for many. Hopefully patients can use this data to lose the all-too-common self-blame over "allowing" POTS to affect their lives, and also to know that they are not alone in their feelings. These findings can also hopefully help inform non-patients that while POTS may be largely invisible, its effects are not.