Inside the Life of Someone With POTS

It’s Dysautonomia Awareness Month in October, and I thought I’d write a little piece on just how terrifying dysautonomia can be.

Imagine you’re just sitting there. Everything is good, and then you stand up. Your brain starts whirring, you can feel your heart pumping faster than it ever should and your vision goes black. Down you go.

Or, you’re walking along, having barely made it through the heart rate rise when you stood, and then it hits you — heart rate increases, and you go through the same thing. Again.

Those with postural orthostatic tachycardia syndrome (POTS, a form of dysautonomia) are forced to go through this process tens, maybe even hundreds of times a day every time we stand, walk or even just sit up out of bed. It becomes almost embarrassing, fainting so many times in public places, and can really cause some trouble when you faint alone — you wake to people thinking you are drunk or drugged up, and when you try to explain, “I have POTS,” of course no one understands.

I hadn’t heard of POTS or dysautonomia until I was diagnosed with it, and I think that says a lot. Prior to my diagnosis, my symptoms were labeled as anxiety — and as I had previously been diagnosed with anxiety, doctors didn’t look at me twice. People thought it was all in my head, and I even started to believe that! But it isn’t. To all of you out there who struggle with dysautonomia — you’re not crazy. Not one bit. Your symptoms are real, they are valid, they exist.

People with POTS often have other illnesses — such as fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Ehlers-Danlos syndrome or irritable bowel syndrome (IBS), and these illnesses come with their own difficulties. A day in the life of a POTSie often goes a little like this:

Wake up, become overcome with pain the second you wake, try to disappear into your mattress for a bit longer. Decide to get up, and this can go one of two ways for me — one, I could just roll out of bed and lie on the floor for a bit. Or two (the more sensible way), I could sit on the side of the bed for a few minutes, and then slowly stand. Jumping out of bed is never the way to go.

Stumble into your clothes, and limp down to the kitchen (people with comorbidities such as fibromyalgia are often quite stiff and sore in the morning). Find a breakfast that doesn’t upset your tummy (again, the comorbidities really get you), and scarf that down without feeling too nauseous. Then, make your way to school or work (driving with dysautonomia is really something else), or just lie on the couch waking up a bit more. A lot of people with POTS struggle to do anything, and that — although it is sad — is OK, too. A lot of people with chronic illness feel they have to be inspirational, or live up to expectations, or do everything everyone else does, and appear “normal.” You don’t. You are fighting so many battles, which take up more of your energy than anyone could imagine. Sometimes lying on the couch is all we can do, and that is OK. Everyone is at a different stage in their fight. There’s no way you should or could be expected to be at the same point as someone who got a head start on you.

By the end of the day, someone with POTS is well and truly exhausted despite their multiple naps — the fatigue is overpowering. Not much strength remains, and it often takes every last bit of my energy to stay awake at the dinner table. Then it’s off to bed for a night of disturbed and unrestful sleep — thanks, insomnia.

I feel as though the fight against POTS would be so much easier if people simply knew about it — if they knew what it entailed, what it felt like, or even just its name! It does get exhausting and lonely when people have no idea what you’re talking about when you discuss why you’re sick, when doctors think you just told them you had a made-up illness and when people think you’re fine because you have a smile on your face and you haven’t fainted in a little while.

A while ago I had an echocardiogram (ultrasound of my heart) and woah. What an experience. It was so surreal to see my heart in real time. This body and heart have been through so much sickness and trauma, and to see my heart beating so strongly and powerfully (and perhaps incredibly fast) made me feel strong and powerful.  I’m constantly feeling broken because of my disabilities (dysautonomia, POTS, fibromyalgia, Hashimoto’s thyroiditis, vertigo and chronic migraines), but today I realized that maybe I’m just bent – I still work all right, I’m getting by, and I saw proof of that on that day.

I’m definitely not broken.

POTS is hard, it’s tough, and it hurts us — sometimes even leaves scars. But after all, scar tissue is stronger than regular tissue. Realize the strength this gives you, and utilize it to do everything you dream of. Don’t hold yourself back because of your illness — you are capable of anything you want, but perhaps not everything. Prioritize, focus on your dreams, and believe in yourself. After all, it isn’t the time it takes you to get somewhere that counts, but what you achieve in the end, and the things you experience along the way.

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