Saturday, February 25, 2012

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.



  1. I think you're overthinking the whole POTS being labeled as invisible a bit. Yes, symptoms can become visible and apparent when you're flushed or about to faint, etc. but in the grand scheme of things, these symptoms are going on inside your body so that makes it invisible. POTS needs to be included in invisible illness awareness for quite a few reasons: someone judging you/giving dirty looks when you get out of your car that's parked in handicap when with a quick look, you look fine. Or taking an elevator up to floor 2 and the other people with you on the elevator who's going higher making snide comments that you could have taken one flight of stairs up because I look fine on the outside. It may be a decent day and I'm not taking the stairs so that my heartrate doesn't shoot up.

    I see what you're saying where there are, at times, very visible symptoms with POTS. But isn't it that way with any illness or disease? I would strongly recommend not saying labeling POTS as invisible is inaccurate.

    1. Everyone is entitled to their own opinion of course, and I respect yours. I was referring more to the doctors view of POTS, and the fact that just because someone looks fine sitting down, does not mean they are ok standing up. And MANY POTS patients look very very sick! Whether sitting, laying, or standing.

      We need to start telling people about POTS and stop being ashamed of feeling crappy and hiding it. The more we talk about it, the less bias there will be.

      Invisible illness downplays just how sick many POTSies are (IMO). What does "sick" look like? Most have other forms of dysautonomia that make them appear very ill, so they look pretty sick to me!

  2. Good post! I understand why some people think of POTS as an Invisible Illness. I take a different approach. Instead of associating my illness with invisibleness - I do the opposite. I want to make POTS as visible as possible.

    To those people who give me dirty looks for using that handicapped spot even though I am young, I actually take the time to talk to them about POTS. They may be really nice people who are just concerned about someone stealing a handicapped parking spot - which stupid healthy people do all the time! If you think about it, they are just doing this out of concerned for the disabled, which is nice of them. Most of the time, if I say to these people that I have a neurological disease called Postural Orthostatic Tachycardia Syndrome (POTS) that makes me pass out when I stand up and it makes it really hard for me to walk, they want to know more. They stop giving me the dirty looks and ask if they can hold the door for me. Most people are not heartless jerks. We just need to educate them in a friendly way that is easy for them to understand.

    Afterall, how many of YOU, before you were sick, would have given someone a dirty look for "stealing" a handicapped parking spot if a muscle bound tough guy with a crew cut and a tight Ed Hardy shirt got out of a red sports car with club music blasting. You would have probably assumed this tool was just being lazy and trying to get a close spot to pick u his lotto tickets and beer. But maybe that guy had POTS or maybe he had something worse. We have all judged a book by it's cover at one time or another.

    So let's all do our part and take the time to educate those around us. And of course there will be people who don't "get it," but those people won't be moved to "get it" when they hear us complaining about life with an invisible illness either.

    POTS is will only remain invisible so long as we let it stay that way.

  3. Great points POTSgrrl! We need to start speaking up, and letting people know that we are not OK, and that there are A LOT of us.

  4. Hi! I don't have POTS but I have Idiopathic Anaphylaxis. I react to chemicals and smells and salicylates and medicines and food... WOW! That is like EVERYTHING! But people ASK me whether am I truly sick as I do NOT look sick!

    Just to share with you what I went through:

    This was what happened to me 3 years ago:

    Take care,