Let’s Talk About POTS.
I was diagnosed with POTS in April 2019. For those of you who don’t know, POTS stands for Postural Orthostatic Tachycardia Syndrome (to be fair, I didn’t know that either until a couple of months ago). You can check out my favorite video that gives an amazing explanation of what POTS is here, but that’s also kind of what this post is about. This is about what POTS means to me and why it is important for me to talk about it.
When someone asks, this is how I generally describe what POTS is. POTS is an autonomic nervous system dysfunction. Because of that, when I stand up, blood pools in my legs and my body is unable to pull the blood back up to my brain, causing my heart to beat abnormally fast to try to compensate. When that doesn’t work, I pass out. That dysfunction also means that my body is unable to maintain normal blood flow to all my autonomic nervous system functions (like controlling respiration, digestion, heart rate, blood pressure, etc.) which essentially means few of those systems in my body are really able to function properly.
I don’t actually know how long I have had POTS or how long it has taken me to get diagnosed because most of my life has been full of seemingly random symptoms that no doctor could quite diagnose or pinpoint. In fact, for many people with POTS, it takes years for them to be properly diagnosed. It was only after I was passing out once every other month and wound up in the ER for a resting heart rate of 143 bpm (which is more than double what it should be) that I went to a cardiologist. He was the one who finally figured it out.
This is where I want to emphasize that just because I now know that I have POTS, that doesn’t change anything about what I was feeling and was capable of before my diagnosis. I still had all the same symptoms, and yet I was still able to work a full-time job while studying for (and earning!) my M.B.A. and going kickboxing on the weekends. Just because I now know that I have POTS, that doesn’t mean that I am not still able to do all those things. *Please note*, many people with POTS aren’t that lucky, so trust and know that I take none of it for granted. But POTS, just like many other invisible illnesses, impacts everyone it touches differently. My story is by no means everyone else’s story.
But this is how POTS has touched me and what POTS means to me (at least so far).
It means sometimes feeling embarrassed. After my diagnosis, doctors kept asking me, “didn’t you feel your heart racing?” So, I told them the honest truth: “I just thought that was normal. ” A couple of months ago I asked my fiancé if he also hears a loud rushing in his ears every time he stands up. He said rarely. In retrospect, it feels silly to admit that I always just thought that was normal too. I thought the headrush and the dizziness I felt when standing up was normal. Turns out, I was experiencing every day what most only experience every couple of months. I have passed out (or near passed out) in public multiple times, which is something that happens to others maybe once or twice in their lifetime. It’s more than embarrassing when everyone rushes to you to make sure you’re ok, you respond “it’s fine, it happens all the time”, and then 10 minutes later you’re walking around like nothing happened.
POTS means feeling like you’re going crazy. I had chronic GI issues that no doctor could explain. I felt like people thought I was just making it up because all the tests I had done led to dead ends. There were moments when I actually started to think it was all just in my head. To this day, when I’m feeling nauseous, people tell me to “just stop thinking about it and it will go away”. If only it were that easy. I started forgetting to put things in my religiously calendar-blocked calendar, and I didn’t understand why all of a sudden I was slipping. Turns out, this is something frequently referred to in the POTS world as “brain fog”.
It means struggling with whether or not I should be honest about having POTS. This is a huge one for me. I am one of the lucky few that can still live a relatively (emphasis on the relatively) normal life. I can still work, exercise, dance, function like a “normal” person, so why even admit that I have POTS if many days I act like I don’t? With every post I make about anxiety and POTS, I question thousands of times over whether or not I should put it online for the world to read, for fear that a potential employer, a potential client, will see it and think less of me and my capabilities. If a client asks “how are you?” do I tell them the truth? If I say that I feel nauseous and exhausted, will that undermine what I am actually capable of accomplishing that day? If I say I have POTS will that eliminate the possibility of working with someone? If I tell my loved ones every day how I am feeling, is that being honest or is that just complaining? If I act “normal”, push through the symptoms, say “I’m fine”, will anyone actually believe me when I say I have POTS? The next time someone tells me “you’ve lost so much weight! You look amazing!” do I tell them I wasn’t trying to?
It means being torn. It means having to choose between passing out at my wedding or being bloated in my wedding dress from all the salt I have to consume. It means having to choose between not wearing compression socks or overheating in 85-degrees with compression socks on.
It means I can’t enjoy food or drink anymore. Now, food is just a means by which copious amounts of salt are shoveled into my body. Water is just something I have to drink as often as I breathe. It means drinking so much water that you don’t have a purse big enough to fit all your water bottles. It means that you have to excuse yourself to go to the bathroom six times in one wedding (true story). Also, alcohol? Pretty much out of the question.
It means seeing a lot of different doctors. POTS isn’t just a “one pill cures all” kind of thing. In fact, POTS doesn’t have a cure at all. (Click here to donate to the POTS Research Fund to get us closer to finding one.)
There’s more, so much more, but I don’t want this to turn into a laundry list of symptoms or struggles just so people assume that I can’t do something just as well as, if not better than, the next person. I just want to spread awareness. I want to answer the questions I now get regularly. I want to break any stigma I can about invisible illness because I am now finding out just how many there really are.
Just because someone doesn’t look like they have an illness (mental illness counts too!), doesn’t mean that they don’t have one. Just because someone is suffering from (or as I prefer to say, fighting from) an illness, doesn’t mean they can’t work hard, sustain a full-time job and crush it, live a (semi) normal life, or be successful. Just because I want to talk about the invisible things no one sees, doesn’t mean that people will now be able to see them (which is both a blessing and a curse). Just because I have POTS, doesn’t mean I want to, or need to, be treated like a china doll. So please, don’t judge a book by its cover, and try not to judge it by its first page either. Everyone has their story, but you’ll never fully understand what it is until you read it from start to finish. And boy oh boy, I am far from finished.