What POTS-friendly activities give you enjoyment and make you feel better emotionally? This question is frequently posted online, often accompanied by expressions of frustration or despair, because the POTS patient feels so limited in what she can enjoy, compared to peers, who seem to be "really living." We can never have too many ideas for cheer-inducing activities, so the POTS Patient-Powered survey asked.
394 POTS patients reported whether each of the below activities either doesn't help, helps a little, helps a lot or is a life-saver! Here are the ratings:
Pets and online support groups were the big winners, with 87% of patients reporting that pets help at least a little. According to HumaneSociety.org, only 62% of American households have pets, so either some POTS patients are enjoying other people's animals or else we are unusually fond of pet ownership. I know my 3 dogs keep me laughing, never complain if it's been a while since my last shower, and love it when I lay on the floor - what perfect POTS companions!
The high ratings for online support networks might reflect the method we used to recruit respondents; online support networks.
To get more ideas, we also asked patients to write in any other activities that help, and here's what was listed:
These results seem to suggest that social interaction - with pets, family, friends, counselors, significant others, and with others who understand POTS - brings a fair bit of comfort. This fits with our findings on the social cost of POTS, which found that a whopping 96% of patients reported that POTS prevented them from socializing as much as they would like.
Feeling understood emerged as a theme, also. The high ratings for online support groups, plus the many write-in mentions of interacting specifically with others who either have POTS or understand POTS, suggests that patients appreciate feeling understood and not alone in their health struggles.