Five Ways You’ll Know If You’re In a POTS –Related Facebook Support Group

Online support groups are a fragile ecosystem of genuine concern and community panic.

Online support groups are a fragile ecosystem of genuine concern and community panic.

  1. If you CTRL+F the phrase “Does anyone else” it would take a full twenty minutes to get through all the statuses.
  2. You consider “S. Haley Faulkk” to be your own personal fashion designer.
  3. You have a notepad doc. of copy and paste-able replies to the new users who constantly ask, “Anyone here tried saline IV therapy?”
  4. There’s nothing on Netflix you haven’t already seen, so you settle down with a bag of salty pretzels and a Gatorade to watch the offensive comments on the “marijuana as a medical treatment” post in real time.
  5. You’re reading the new posts by the light of your cellphone on your bedroom floor—where you’ve been laying flat for the last twenty minutes unable to stand up.

I’ve been a fan of Facebook support groups for chronic illnesses, and I’m sure that’s how most of you got here in the first place! Being able to turn to people across the world that you don’t even know to give you advice on your most personal problems is a first-world wonder. And I’ve been able to connect with some pretty cool people that way!


Tomorrow will be my first real-life support group with Dr. Santa Maria. We’re inviting POTS patients from all over South Florida to come and discuss strategies for being chronically awesome. Hope I get to see some of you there!

Have you ever been to an in-person support group for chronic illness? What was your experience?




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