The Social Cost of POTS

In our POTS Patient-Powered Survey, one theme kept jumping out for attention...practically with jazz hands! It was the social cost of having POTS:

No effect, 1% Minor nuisance, 7% Moderate challenge, 17% Big challenge, 33% Huge detriment, 42%

And there was one point of near-complete consensus:

Yes, 96% No, 4%

We knew isolation was an issue, but wow - we didn't expect such a landslide. Patients reported getting regular socialization at home with family and pets, and in online support groups, but not by getting out much. Socializing at work or school was hampered by the fact that 60% of respondents were unable to work or attend school.

Getting out with friends was rare for many POTSies, too:

Every day, 1% Most days, 4% Weekly, 20% Monthly, 28% Less than once per month, 47%

What keeps POTS patients from socializing more?

On a 5-point scale from "not a factor" to "huge factor," patients rated various reasons that POTS keeps them from socializing as much as they would like.

In addition to these obstacles, patients were invited to write in "other ways POTS affects your social life." 119 participants wrote the following answers, some of which are paraphrased:

  • Friends and family don't understand my illness (18)
  • Socializing can cause exhaustion or make me sick (12)
  • Unable to tolerate heat (7)
  • Anxiety (6)
  • Having to back out of plans last-minute due to symptoms leaves friends resentful (5)
  • Can't tolerate loud noises (5)
  • Can't do activities my friends like (5)
  • Wheelchair is too difficult to get around (4)
  • Can't predict how long I will last (4)
  • No energy (4)
  • Lack of motivation (4)
  • Worried I won't be able to function the next day (3)
  • Friends think I'm "faking" (3)
  • Tired of trying to explain POTS (2)
  • Friends doing physical things that I can't do (e.g., marathons, hiking, long walks, travel, dancing) (2)
  • Heart rate gets too fast (2)
  • Can't eat normally (2)
  • Socializing makes me ill after a few hours (2)
  • Can't get around, need help, feel like a burden (2)
  • Need my friends to come to me, which they got tired of quickly (2)
  • Can't do activities I used to do (2)
  • Have to leave if it's too warm or if there is too much standing (2)
  • Can't walk many places and get tired from talking too much (2)
  • Too dizzy or out of breath to speak (2)
  • Need to lie down often (2)
  • Unpredictability of how my body will react to things
  • Can't go to cinema
  • Fear of having an episode and needing an ambulance ride
  • No energy and staying up late makes me restless, sick, shaky, weak, unable to focus, with tremors, may collapse
  • Feel too ill to go out or to invite others over, because it requires cleaning house, grocery shopping, cooking, etc.
  • Don't have energy to concentrate for several hours and to drive both ways
  • Friends don't care
  • Feeling that my life is so different from my friends'
  • Embarrassed to excuse myself to the bathroom so often
  • Awkwardness of telling others I need to sit down and can't walk even a few blocks
  • Hard to find people who are understanding and have fun doing things that allow me to rest if needed
  • I fear what people will think if they see me sitting even in a short line or having to take breaks to catch my breath
  • Constant sweating means I can't wear makeup or clothes I like
  • I can never keep our plans
  • Constant anxiety about people not knowing what to do or not believing I'm disabled
  • Can't be near fluorescent lights
  • Constant visual disturbances and other symptoms make it hard
  • Always feel like I need to lay down and don't feel well
  • Mental inability to process incoming data; touch, movements, lights, sounds make me feel ill
  • Need someone to hold my hand if not in a wheelchair
  • Hard to relate to people now
  • Very insecure and depressed
  • Many ways
  • Relationships ruined by people not believing I'm sick or blaming me for being sick
  • Nausea or fear of vomiting in public
  • Can't work or attend school, so don't get to know many people (2)
  • I've lost friends because of POTS, so I don't get invited anymore
  • I'm bored and cranky, but don't have the energy to fix these things
  • I'm Debbie Downer
  • Palpitations
  • I have lost all independence
  • Faint often
  • Too hard to manage medicines, water, having places to sit - it's a lot to handle
  • I feel like my life is being sucked out of me
  • Nothing besides health to talk about
  • Sick of others' questions, advice, incredulity
  • Chronic diarrhea makes it difficult and embarrassing to socialize
  • In ER often, have to cancel plans
  • Memory loss
  • I can't keep up and don't have energy to invest in friends that don't understand
  • I CONSTANTLY yawn, which is very embarrassing in public
  • Most activities involve standing too much
  • Fear of being out and fainting or being in great pain
  • I just want to sleep ALL THE TIME
  • Worry that going out with cause a cascade of health event that will harm other parts of my life (e.g., continuing college)
  • Weight gain and hair loss
  • Never sure when an attack will happen

These responses highlight the need for more social opportunities that work better for POTS patients. We plan to ask about this in our next survey, so start brainstorming and let's all take a moment of gratitude for Netflix.

In the meantime, keep in mind that there are lots of online social groups for POTS patients. You can find online support groups through Dysautonomia International and Standing Up to POTS and by searching for "POTS" or "dysautonomia" on Facebook. There are many great groups for all POTS patients, and also ones specifically for men, women, teens, parents, EDS patients, Lyme disease patients, and many more.

You can find more survey findings here or learn more about us here. Be well!

Tags

brain fog fatigue pain socializing