My POTS Diagnosis Story
I have a very weird medical chart, but if I had to pick the most exhausting symptom to explain to a stranger, it’s the fact that my body is actively allergic to standing up.
Seriously. My body hates gravity.
Most people take standing up for granted. You roll out of bed, you stand at the sink to brush your teeth, you walk to the mailbox. Your brain and your heart have a nice, quiet convo, your blood vessels constrict, and your blood pressure stays exactly where it belongs so you don’t pass out.
My body missed that memo entirely. And the roots of this gravity battle go all the way back to 2015. Granted, I wasn’t officially diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) until 2025.
The Kitchen Bar Incident (Sunny’s Pregnancy)
When I was pregnant with my youngest daughter, Sunny, my cardiovascular system completely revolted. I started having severe, terrifying episodes of tachycardia — where my heart would race like I was sprinting a marathon while I was just sitting perfectly still — accompanied by sudden presyncope and fainting spells.
By 27 weeks, my cardiologist was in a total panic. He wanted to deliver the baby immediately because he was genuinely concerned I wouldn’t survive the remainder of the pregnancy. I refused. I told him I would put myself on strict, full bed rest instead. He wasn’t happy about it, but I stayed down, and we made it through.
But staying down is easier said than done when your brain drops a “nesting” bomb on you. With both of my girls, my pregnancy nesting was no joke. When I was pregnant with my oldest, Tempest, I was literally dragging bookcases to another room by myself. I got creative — I laid them down on a blanket and dragged the blanket. That’s better, right? Haha. My husband was absolutely not pleased, but “I’ll get to it later” just didn’t cut it for my brain. It HAD to be done right that second.
So when the nesting instinct hit while I was stuck on bed rest with Sunny, I tried to be smart about it. I figured out a loophole to satisfy the urge while keeping my feet off the floor. I sat on a stool at the kitchen bar and had my husband bring me everything out of the pantry, item by item. The plan was simple: I would sit completely still and sort the items, and he would be my physical body, putting them back exactly where I told him to.
I wasn’t standing. I wasn’t lifting. But just the minor physical exertion of sorting cans from the left side of my body to the right side sent my heart rate screaming past 150 BPM.
I was absolutely crushed. And I was livid. WTF? I was sitting, dammit!
The 66/32 Crash
That pregnancy was the official turning point where my heart permanently forgot how to handle basic physics. After Sunny was born, the tachycardia never went away. That was the beginning of the endless testing, the bone-deep fatigue, and the gaslighting from doctors who tested my thyroid a million times, shrugged, and told me to lose weight.
I spent years navigating life with this broken internal barometer. But not that long ago, my body decided to show me exactly who is boss. It was a normal Tuesday. I had a doctor’s appointment. Then I drove to the school pickup line to get my girls. And finally, I came home and put away the groceries. Just standard, everyday mom duties.
But because I have Post-Exertional Malaise (PEM) caused by POTS, my body’s accounting department doesn’t negotiate. By that evening, the overexertion caught up to me, and my system completely bottomed out. My blood pressure crashed down to a terrifying 66/32.
I could barely move an inch or force my throat to form words. My husband wanted to take me to the Emergency Room, but I absolutely refused. I knew exactly what would happen. I would force my exhausted body through the agonizing sensory nightmare of an ER waiting room, only for a doctor to tell me I was “just dehydrated” and send me home. So, I stayed put, chugged electrolytes, and stayed completely horizontal.
“Have You Tried Exercise?”
A few years after I had Sunny, I stumbled across POTS online and the clouds parted. I was sure that was it. But when I brought it up, doctors gave me a collective “nope” and told me I just needed to lose weight and exercise. I eventually gave up and stopped pushing — until the TikTok algorithm started serving me videos of people with POTS. Seeing my exact life reflected back at me gave me my second wind. I fought for it for years.
When I finally got a referral to a specialist for a tilt table test, the experience was a total circus. They never even gave me instructions to stop taking my extra salt before the test. I tried to guess on my own and stopped a few days prior, but it wasn’t nearly enough time to clear my system and show a true baseline.
During the test, I literally passed out. You would think fainting while strapped to a tilting table would be a slam-dunk diagnosis, right? Wrong. The specialist told me the test was “inconclusive” because I passed out during the second part of the test, but not the first.
When I went to my follow-up appointment and laid out the whole 66/32 crash for my cardiologist, he looked at me, completely unbothered, and repeated the old line: You just need to exercise more. Telling someone whose blood pressure crashes to double-digits from putting away groceries to “just exercise more” is like handing a bankrupt person a massive bill and telling them to just spend more money to fix it.
Honestly, I’m not even 100% sure if POTS is actually in my chart right now because the paperwork side of chronic illness is a disaster. But it doesn’t matter, several doctors have said that’s likely it. My autonomic nervous system is broken.
If you are chronically ill, you quickly learn that validation doesn’t come from a white lab coat. It comes from learning your own body’s math, respecting your limits, and refusing to let a doctor gaslight you into pushing past a boundary your heart cannot afford to cross.
Have you ever had a medical professional completely miss the point of what your body was telling them? Let’s talk about it in the comments.
Keep going, folks, and remember, whatever you can do today is enough.
