POTS is Just as Common as…
In my attempt to demonstrate how relevant and prevalent POTS (Postural Orthostatic Tachycardia Syndrome) is, I put together an infographic that I hope you’ll share. It is about time to know about POTS. POTS is just as common, if not much more common than many other well-known debilitating conditions including: Asperger Syndrome, Lupus, Rheumatoid Arthritis, Crohn’s Disease, Ulcerative Colitis, Type I Diabetes, Chronic Fatigue Syndrome (ME/CFS), Parkinson’s Disease, Sickle Cell Anemia, Cystic Fibrosis, Amyotrophic Lateral Sclerosis (ALS)/Lou Gehrig’s Disease, and many others.
POTS is literally 100 times more common than ALS. Yet most people haven’t heard of POTS, and dismayingly, many nurses and medical professionals haven’t yet either. ALS had a tremendously successful campaign called “The Ice Bucket Challenge,” which was featured on The Ellen Degeneres Show, and other prime time TV. Former President George Bush, and major celebrities including Chris Pratt, Taylor Swift, and Tom Cruise participated in the challenge to raise awareness for the disease. It was a wonderful campaign, and if the public can care to know about ALS, then I’m certain the public is ready to know about POTS.
Giving People Context
I try to mention my condition as often as the opportunity presents itself to spread awareness. I’ve gotten frustrated sensing that many feel POTS isn’t worth knowing about, because it must be rare and uncommon since they haven’t heard of it before. How is knowing about this condition going to be useful to them? If they think it’s rare they’ll probably dismiss it as unneeded trivia, and move along with their day. To make POTS memorable, people need context and an easy way to understand it.
Why Should Others Know About POTS?
It’s important for others to know about, because it could happen to them or someone they know or love. The fundamental goal is for more people to be able to identify it, so people suffering from POTS can get a diagnosis much more quickly than the average 5-6 years it currently takes. A diagnosis means treatment and help.
How to Describe POTS
A real challenge is trying to describe POTS quickly and concisely. I have yet to perfect this POTS “elevator pitch.” What keywords should I use to convey the gravity of the condition? What I’ve found best is to say something like…
“I have POTS. It’s not rare. It’s an autoimmune condition that’s sort of like the “new Chronic Fatigue Syndrome.” It’s not well known yet, but it’s debilitating, and often misdiagnosed as anxiety.
And now I’m adding…
“It’s just as common as Type I Diabetes or Chronic Fatigue, and 1 in 100 teenagers develop it. Adults come down with it too, if you know someone struggling with vague symptoms… it could be POTS.”
So technically it’s not completely proven that POTS is autoimmune, but the science is stacking up for that conclusion. The benefit is that when communicating “autoimmune condition,” people seem to understand right away that I’m dealing with a serious condition. Trying to define POTS by the diagnostic criteria of elevated heart rate is very misleading, because it’s one of the least problematic symptoms. I’ve had more than one person respond with something like, “Well isn’t that good for you? It’s like you’re jogging all the time!” POTS is a systemic disorder of the autonomic nervous system, and though not fatal, it is profoundly disabling at its worst.
If you have a great way to explain POTS, please share it!