Stand Up POTSies - You DO look sick!

Spoons = Energy.

So I was discussing the whole "invisible disability" and "but you don't look sick" labels/movements with someone the other day, and it made me think about the whole issue in terms of POTS.  I'm on board with supporting the Spoonie movement, as it explains how us POTSies and Dysautonomia folks have to delegate what to spend energy on, and is a great analogy to send to friends and family about our condition.  But I feel labeling our condition as invisible is not accurate.

Many people with POTS and dysautonomia are young, and do not have apparent or obvious deformities. This does not equal not looking sick, or being invisible.   



When laying and/or sitting down, most POTSies are feeling their best.  I'm not saying they feel great.  They still have symptoms, but most try to hide it.  Many people suffering from POTS have GI (stomach and digestion) issues, neurological issues, and  just plain wacky unexplained health issues as well.  Many are skinny, pale, and gaunt looking.  Many have other conditions such as EDS, Sjogrens, MCAD, Lyme, and a whole host of other diseases.  Many have to use wheelchairs or walkers, or other devices to aid in movement and needing to take breaks from being upright.  And if you really want to see a POTSy look sick, just ask them to stand.

When someone with POTS stands, their heart pounds, their face usually turns white, and they may start to shake. You can see blood pooling in the limbs of many, often termed, "POTS feet". Others have blood pooling in their abdomen, which is harder to see. But you can tell when someone feels faint.  You can tell when someone is dizzy - they look spaced out, or are gripping and holding on to anything to stay upright.  And most symptomatic POTSies feel dizzy and faint every time they stand.

POTS legs!  Blood pooling, causing the heart to beat faster.

People with POTS often have the quality of life of someone with COPD or Congestive Heart Failure.  But we try to hide the fact that we are sick.  It's embarrassing, a pain the butt to explain, and hard for others to understand.  So we hide it (I used to!).  We don't want our jobs endangered or to be judged - and we are a group of tough, fighting, overcoming patients - so we push through.  Just because someone works, doesn't mean they aren't sick.  It means they are fighting to eat, pay bills, and manage symptoms to continue living their lives.


But in order to get the word out and spread awareness, we have to fight for people to understand, and allow ourselves to look sick!  I'm not saying pass out for people on command, but it's ok to admit that you feel crappy and let that show once in a while. It's ok to look as sick as you feel.  And if a doctor gives you any lip about not looking sick, being young and healthy, or just having anxiety - DEMAND they hook you up to a heart rate/blood pressure machine and STAND UP.  If you have POTS, they will see that something is wrong.

POST Post Adendum :)
***Seems I've ticked a few people off with this post :)  I've gotten quite a few emails this morning.  Good!  Gets people thinking, and I enjoy the respectful debate .  POTSies are SICK, and try to hide it - people with MS sometimes aren't visibly sick, but all they have to say is "I have MS" and everyone understands. Even on a good day.  There are many functional people with MS, and it is not apparent - but the public and doctors know that it is disabling.  There are a half to a third the amount of people with MS in the US compared to POTS!  This was my point.  The public and doctors need to know what POTS is, so if you get funny looks, or comments - all you have to say is, "I HAVE POTS!" and they understand.

---Claire