The POTS Elevator Speech

I've found having a 60 second "elevator speech" about POTS can come in very helpful. I start by asking how much people know about the nervous system. Rarely does anyone know what it does other than that it involves nerves, but in the rare case that you're talking to a doctor you can skip a few steps and that way you don't sound like you're talking down to someone who knows about it already. Then I give a brief explanation of what the nervous system does focusing on the autonomic side. "Ok, so the nervous system basically controls everything your body does, the autonomic nervous system controls everything you don't think about. Thats what's broken with me, I have to think about all those things and control them myself with my treatments. Things like heart rate, blood pressure, digestion, temp regulation, immune system, and more. All that stuff doesn't work right when you have POTS." Usually this is met with faces of confusion and/or surprise. Then I explain some basics of how that effects me. "So when my heart rate is low I get chest pains, when my bp is low I pass out (a lot), when I eat I need to make sure I drink enough because the food doesn't always leave my stomach on its own." Here people usually ask how I control it all, so I explain some basics of my treatment plan. "I drink as much liquid and take in as much salt as possible. I take a handful of pills in morning and at night which control symptoms and help my heart rate and blood pressure. I avoid standing for long periods of time, can't push my body very much, and need to get at least 10 hours of sleep in order to avoid a flair up of symptoms."

I never know when I'm saying too much or too little, but I usually take cues from how much people are responding and what questions they ask. I personally would rather over explain than have people not understand what is wrong and think I'm just lazy or making things up. I hope this helps you out when you are explaining your condition to friends, that can be difficult and awkward for both sides of the conversation, so having some basic idea of how you want to explain it can help a lot in the long run.