What It Means to Live With an Invisible Illness Like POTS

Sometimes I spend hours trying to think of ways to explain to people what it is like to live with an invisible illness, specifically POTS, but then I stop myself and wonder why I’d even try and explain it because on the outside I am always going to look “normal,” which makes it easy to forget. That’s the thing about living with an invisible illness though – people forget. It’s not their fault and I don’t blame them for it, but they do. They forget.

***

POTS stands for postural orthostatic tachycardia syndrome. Try pronouncing that one out loud. Trying to pronounce postural orthostatic tachycardia syndrome is kind of what it feels like to try to explain what it is or how it affects those who have it to those who have never heard of it before. Hell, I couldn’t explain it to myself or doctors for almost four years and most days I still struggle with it.

Have you ever experienced one of those times where you stood up and said, “Whoa…I just stood up way too fast,” because you got a head rush and suddenly lightheaded? Living with POTS is feeling like this every time you stand up.

Or have you ever done the stair-master at the gym for 20 minutes and gotten off out of breath, your heart rate spiking up, and you needed to take a break? When you live with POTS, this is what it feels like every time you walk up one flight of stairs.

It feels like taking the elevator up one floor and having people stare at you silently (or even sometimes not silently) and judging you for being “lazy.”

Living with POTS consists of weird habits, like drowning your food in salt because the doctor says it might help you feel a little bit better. Or carrying around your 32 oz. water bottle everywhere you go. And when I say everywhere, I mean everywhere, even to the bathroom at work (gross). Or standing up and waiting 15 seconds before actually walking anywhere because you need to make sure your body isn’t going to stop working before you start moving.

It consists of canceling plans last minute because your body gave up on you out of what seems like nowhere and having to make up an excuse because “I just don’t feel well” doesn’t feel like it’s cutting it anymore.

It consists of leaving a conversation midway through to “use the restroom,” when in reality you just need to sit down because you can feel your legs starting to shake, the weight of bricks on your chest and your heart rate spiking up to 130 BPM (and that’s on a good day). Mix this with one of your biggest fears – passing out, especially in public – and you have the making for one anxious recipe.

It consists of seeing a flight of stairs and having to stop and think about how you are going to feel before, during and after you climb those two flights, which to you feel like a mountain.

It consists of having to plan around what your body might be able to handle, but even that will likely end up being too much.

It consists of seeing pictures of friends traveling, hiking or even just taking a long walk on a nice day and wondering when you will be able to enjoy life’s simple pleasures again.

It means that a good day is when you can grocery shop, clean your room and meal prep (while standing up!) – all after work!

It consists of going to doctor after doctor, specialist after specialist and being told, “Here’s what we can try…” but it may or may not – and probably won’t – help you feel better.

It means that, despite the amount of time you spend lying down, “relaxing” is something your body rarely does. Mostly because of horrible anxiety about everything going on with your body, but also because that’s just not how your autonomic nervous system works.

It means not being able to explain to people why your body is able to do something one day but not on another day because one of the only methods, even in the medical world, for explaining this is that some days you get less “spoons” than others. (Disclaimer: the “spoon theory” is actually a great way to explain to people what it’s like to live with a chronic illness to those who are looking for a way.)

It means having no idea how you or your body is going to feel any minute of any day.

It means trying to do everything in your power and using every last ounce of energy to appear “normal” to the rest of the world while on the inside you feel like your body is shutting down.

That is what it feels like to be living with an invisible illness, at least to me.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by gabri_prato