A common lament in support groups online is that POTS patients feel misunderstood, unable to participate in "normal" social events, or like they are having trouble connecting with others. To get a better picture of patients' challenges, the POTS Patient-Powered Survey asked patients whether POTS had hurt the following relationships.
Co-workers or classmates, 63% Friends, 73% Immediate family, 55% Extended family, 44% In-laws, 35% Spouse or romantic partner, 55%
These data are not surprising, given our findings of the social cost of POTS. It may also help explain our findings of what helps us cope, where we found that pets and online support groups got the highest ratings for helping to make patients feel better when POTS gets them down.
One of the very purposes of this website and survey was to help aggregate patient experiences so that we could better communicate them to others. Patients with other invisible illnesses report having similar challenges. There is always a difficult balance, in my experience, because telling others how awful you feel can sound like complaining, but NOT telling them makes them think you're fine. It's a fine line to walk, but worth trying, if it makes better relationships.
We have lots more findings here, or to receive occasional email updates on new findings, you can sign up on our homepage. Be well!