In case you didn’t already know, October is international Dysautonomia Awareness Month. Yes, I am posting this article on the tail end of October this year, but I figured that late is better than never when it comes to spreading awareness about a condition that affects up to 3 million people in the U.S. (including your’s truly).
What is dysautonomia, you ask?
In simple terms, it is a condition that affects your autonomic nervous system, which is the part of your nervous system that a healthy person never has to think about. Things like digestion, vision, breathing, and blood pressure are all regulated by the autonomic nervous system.
This chart shows just how many body systems are innervated by the autonomic nervous system (which is broken up further into the sympathetic/parasympathetic systems):
One of the most common forms of dysautonomia is a specific condition called POTS, and no, it isn’t in any way related to the marijuana plant…sorry!
POTS is an acronym for “postural orthostatic tachycardia syndrome,” which is really fun to say, but not at all fun to live with.
When you have POTS, your body doesn’t have very good control over your blood pressure and heart rate. Your blood vessels basically become a bunch of slackers so when you stand up, instead of fighting against gravity to push blood upwards towards your heart, the blood goes into your feet instead.
This makes walking, standing, and even sitting upright really hard at times. Many people with POTS faint or nearly-faint multiple times a day when trying to do everyday tasks. It also makes you almost fall asleep after you eat (aka. the dreaded “food coma”) and it causes all kinds of mental issues like anxiety and brain fog.
What this all boils down to is that people with POTS do some things in public that look a little odd and may even be perceived as “rude” by oblivious bystanders.
Here are 5 ways I act differently because of POTS:
1. I Put my Feet up on EVERYTHING
As I mentioned earlier, gravity really works against you when you have POTS. When all your blood is pooled in your legs and feet, you have to kick your boots up and place them on whatever object is around in order to get the blood in your upper body where it belongs.
This means that tables, chairs, walls, the dashboards of other people’s cars, and even other people themselves quickly become foot-rests. Yes, sometimes a good Samaritan of a relative will even allow me to stick my sticky feet on them in order to elevate my legs and restore oxygen to my upper body.
Thank you, kind souls, who bear the weight of my feet without complaint. Your sacrifice has not gone unnoticed.
2. I Constantly Fidget like a Kid
A long time ago in my college anatomy and physiology class, we learned about the “skeletal muscle pump” system in the human body.
Basically, your veins don’t have an efficient way to return blood to the heart unless you are either laying down or moving your legs. Flexing your calves and thighs helps force the “old, used-up” blood in your veins back up to the heart for re-oxygenation.
When you have POTS your veins need all the help they can get to work against gravity, so you subconsciously squirm and fidget like a hyperactive toddler no matter where you are or who you’re with.
I constantly find myself moving around, flexing my legs, shifting my weight, and repositioning myself about 100 times in a 10 minute period just because I feel better when I do that.
The downside is that everyone around you assumes that either, (A) you have somewhere better to be, (B), you have a serious case of ADHD, or (C), you really have to use the bathroom.
This makes it a tad bit awkward on first dates and during job interviews, but hey, you gotta do what you gotta do to stay upright.
3. I Sit Down/Lay Down at Inappropriate Times
This is the one that generally gets me stared at and silently judged by strangers when I’m in a public setting.
There are some unspoken rules and rituals about standing and sitting that nobody is supposed to break.
For example, at a graduation ceremony, or a wedding, or a funeral, everyone is supposed to stand for a portion of it, or else you just look like a jerk.
Generally, really old people, “visibly disabled” people, and little kids get a free pass on this one, but if you’re a 20-something and you appear to be totally healthy then you get a lot of “stink-eyes” from the people around you if you stay seated during the National Anthem or while they’re lowering uncle Bob into the ground.
And that’s what’s so frustrating about having an invisible illness. Although nobody else can see it, I’m struggling to stand up for all of 3 minutes during a ceremony of some kind, but no one can tell because I appear to be just fine.
They think I’m just lazy and entitled when really, I’m trying not to faint and cause a scene.
4. I Interrupt People During Conversations
This one may sound strange to anyone who doesn’t have dysautonomia or brain fog, but I promise that I’m not just making excuses for being impatient (well, maybe I am a little bit).
When you’re brain is hungry for oxygen you can’t think very well, and when you can’t hold onto thoughts for very long you feel the need to turn those thoughts into words and get them out of your mouth immediately before you forget them.
People with ADD or ADHD definitely know what I’m talking about here.
For example, I tend to talk at roughly a billion words per minutes, barrel over the top of people, and finish people’s sentences for them even when they don’t want me to. I don’t do this to be rude and I’m always trying to hold my self back, but it’s really hard to have a normal adult conversation when you always forget what you were saying.
When I don’t get my words out ASAP I end up going “…Crap…I forgot what I was going to say, never mind,” as soon as it’s my turn to talk.
It sort of feels like all of your thoughts are cars moving at 100mph and you must run to catch them before they turn off onto another street.
To all the people whom I interrupt on a regular basis, I apologize, but my thought-cars are just moving a litter fasting than everyone else’s so hopefully I get a pass on this one.
5. I Take All my Clothes Off in Public
Ok, I don’t actually take all of my clothes off in public because, well, that would be illegal.
I do, however, tear through layers of clothing like a crazy-person in public settings because of the severe temperature dysregulation that comes with dysautonomia.
The autonomic nervous system is one of the main things in charge of your body’s internal temperature gauge and when it goes wonky, your body temperature goes wonky, too.
But unlike hypothyroidism, for example, where you’re just too cold all the time, with dysautonomia, you fluctuate between cold and hot all day long.
I have distinct memories from college where I was burning hot in class so I stripped down to nothing but a thin tank-top while my peers were wrapped in layers of sweaters and scarves.
Likewise, I will often be freezing cold when everyone else is boiling hot so I’ll pile on clothing until I finally warm up. But as soon as that happens, yep, you guessed it…then I’m too hot so I take it all off again.
This one is more annoying than anything, but it’s one of those things that I forget is a little bit socially weird, so it gets a place at the bottom of the list.
Ok, that’s everything.
Thanks for reading this post! I hope that sharing these experiences will help you to understand people with dysautonomia a little bit better. Dysautonomia isn’t really that rare, either, it is just rarely understood, so you may know someone in your life who has it!
Thanks again for reading and have a great Halloween,
Em the Silver Spoonie