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What Is POTS, Really?

Today I was diagnosed with postural orthostatic tachycardia syndrome. The number one question people ask me is: What is POTS? That’s a complex answer; here is my definition. For me, a POTS diagnosis has been a huge answer at the end of a dark tunnel, but it has also opened a Pandora’s box I didn’t even know existed. What is POTS?

POTS is the blue feet you’ve wondered about for years. It’s the racing heart rate every doctor but one tried to write off. POTS is having to withdraw from school because you can’t get out of bed and certainly can’t keep up with college courses. It’s having blood pressure that bottoms out in the hospital and has nurses in a fit because your heart rate is still too high. POTS is all of this and so much more.

POTS is your doctor looking you in the face and telling you she doesn’t know how to treat you and is “going to try” to find a doctor who can. It’s your insurance telling you that you’re maxing benefits and it’s only March. POTS is the fourth nap you’ve taken today but still you don’t have the energy a 19-year-old should have. It’s the headache that never goes away and the ever-growing pill box on the counter. POTS is the dizziness you feel when you stand up – the roller coaster you never wanted to ride. It’s a complex syndrome that has no cause and is still relatively new. POTS has no cure. POTS has no one treatment.

POTS patients don’t want your sympathy, they just want you to understand that it takes about three times as much effort to do anything than it would a normal person. This is because in POTS patients our blood is thick like molasses and settles – sometimes walking can feel like running a marathon. Be understanding, we may need a minute to adjust or to rest; please don’t rush us. Most importantly, please ask us questions. I know with my family I would prefer they ask me over Google because I’m more accurate with my personal symptoms. Thank you for understanding!

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Thinkstock photo via Gala2205.