Teenagers' social lives with POTS

The high social cost of POTS was perhaps the most pervasive finding from the POTS Patient-Powered Survey, where we looked at patients of all ages. For example, in this finding we examined POTS-related barriers to socializing and here we examined how POTS affects relationships.

In order to see how adolescents and college-age POTS patients were faring socially, we decided to look at data from only those POTS patients who were ages 13-22 at the time of completing the survey. There were 124 such respondents (8 males, 116 females; 112 from the US, 4 from Great Britain, 3 from Canada, 2 from Ireland, 1 each from Australia, Denmark & Finland.)

Just as in our all-ages data, there was one point of overwhelming agreement:

Yes, 117 No, 6

Next, we asked how often patients socialized with peers in several different ways. Below are the percentages of 13- to 22-year-old POTS patients who gave each response.

Every day, 51% Most days, 33% Weekly, 10% Monthly, 4% Less than once per month, 2%

Every day, 23% Most days, 32% Weekly, 21% Monthly, 10% Less than once per month, 14%

Every day, 1% Most days, 6% Weekly, 32% Monthly, 27% Less than once per month, 34%

Patients reported getting more regular socialization at home with family and pets, and in online support groups, but not as much by getting out with friends. Socializing at school or a job was probably hampered by the fact that 64% of respondents reported that - because of POTS - attending school/work full-time was "a huge challenge" and another 22% rated it "difficult."

No problem at all, 2% A little tough, 13% Difficult, 22% A huge challenge, 64%

Getting out with friends was also rated challenging by many, as seen below:

No problem at all, 3% A little tough, 21% Difficult, 38% A huge challenge, 37%

Given that 75% of teens and young adults rated going out with friends as "difficult" or "a huge challenge," we wondered what specifically made it so. We asked patients to rate several possible barriers to socializing.

On a 5-point scale from "not a factor" to "huge factor," patients rated various reasons that POTS kept them from socializing as much as they would like. The following table shows percentages of patients who rated the below factors as "huge" or interfering "quite a bit":

Low energy, 87% Brain fog, 49% Unable to stand, 47% Physical pain, 48% Fear of fainting in public, 43% Unable to shower or groom properly, 31% Fear of needing bathroom too often, 18%

We also invited respondents to write in any other factors that prevented them from socializing more. Below are the 27 responses written in (some paraphrased):

  • Anxiety due to adrenaline rushes
  • Anxiety feeling, eating issues, tiredness
  • Hard to find people who are understanding and have fun doing things that I can do
  • Can't be near fluorescent lights
  • Can't do the activities that my friends want to do
  • Constant anxiety about people not knowing what to do or not believing I'm actually disabled
  • Fear of having an episode and needing an ambulance
  • Friends don't understand
  • Friends who don't care or want to understand
  • Friends are resentful when I have to back out at the last minute due to symptoms
  • Having to explain to people what's wrong
  • Not being able to do activities with peple like hiking or swimming
  • Heat intolerance (beach, parks, exercising)
  • I can't walk many places. I get tired from talking too much.
  • I faint if I try to stand more than 30 seconds, so I have to use a wheelchair, which is hard to get into car and other places
  • I can't work a normal job, so I know less people
  • I just want to sleep ALL THE TIME
  • In ER often, have to cancel plans
  • Many ways
  • My constant visual disturbances and other symptoms make it hard
  • Needing wheelchair
  • Can't do the things I used to do
  • No motivation
  • Nothing besides health to talk about
  • Physical limitations, i.e., not being able to go on hikes
  • Tired and brain fog
  • Pay the price for overdoing it

Given these factors, perhaps it's not surprising that 13- to 22-year-old patients reported that POTS had negatively affected some relationships. Below are percentages of patients who responded "yes", when asked:

Romantic partners, 38% Extended family, 43%
Immediate family, 52% Co-workers or classmates, 72% Friends, 81%

In light of these findings, the answers to our final question about POTS's overall impact on social life were not surprising:

No effect, 2% Minor nuisance, 7% Moderate challenge, 26% Big challenge, 30% Huge detriment, 34%

Given these findings, it's time for us to start thinking of more POTS-friendly ways to socialize and have fun. So let's get our creative juices flowing and start brainstorming.

Resources for teens and young adults:

Luckily, there are some good people working to help make sure that young POTS patients get support, socialization and expert help, when needed. An organization called Standing Up to POTS lists all kinds of great information for teens, young adults and their families. They have great resources for things like:

A silver lining?

These findings may contain several silver linings:

  1. Now that we are aware of the social impact of POTS, we can take more action to address it. Standing Up to POTS is a relatively new organization, but is making swift progress, and already plans to use these findings to help teens and young adults.
  2. Teens and young adults can feel confident that they are not alone in feeling that POTS has added social challenges.
  3. Teens and young adult POTS patients can feel emboldened to reach out to one another online, knowing that many others share the same experiences and perceptions, and long for more social interaction.
  4. POTS patients can lose any guilt and stop blaming themselves for social challenges, knowing these challenges are just part of the POTS package.
  5. POTS patients can feel good knowing that while non-POTSies may not always understand them, they have a large cohort of fellow patients who understand completely, and who have lots in common with them.
  6. Families and friends who are willing to read this report can gain better understanding of their POTSies.
  7. Families and patients can start discussing and managing the social challenges just like any other symptoms of POTS.
  8. Awareness of social challenges enables patients to take advantage of the "underdog effect," as described in Malcolm Gladwell's book, David and Goliath. He explains that when a challenge inspires us to give conscious effort and deliberate management to a problem, we often succeed much better than all the non-challenged people, who got away with just "winging-it." His book has lots of inspiring examples.

In other words, there are many reasons for optimism.

Now, for the lighter side, here are some findings about what helps POTS patients feel better and cope. To browse other findings, click here, or you can learn more about us here.

Be well!


Social teens