Living with POTS Syndrome

Unless you have a chronic illness, it’s hard to even imagine living with POTS Syndrome (Postural Tachycardia Syndrome). I’ll be honest before I got diagnosed with POTS syndrome, people living with chronic illnesses was something I never really thought about. And even when you do have a chronic illness, there are so many forms of chronic illness and varying levels of severity that it’s hard to relate even then. 

And the posts or tweets I would see on social media about living with a chronic illness were always so positive. 

"There's new research," or 

"look what I've managed to do despite my illness," or 

"I'm such a huge advocate for [insert chronic illness here]". 

And don't get me wrong, I adore those types of posts and regularly share them or write something similar myself. But you never get to see the ugly side of chronic illness. The reality of living with POTS syndrome.

What is POTS syndrome? 

Before I share with you what it is like living with POTS syndrome, I better tell you what POTS is. POTS is a form of dysautonomia which affects how blood flows through the body and causes dizziness when standing. Technically, someone has POTS if their heart rate increases by 30 beats per minute or their heart rate are greater than 120 beats per minute within 10 minutes of standing up.

I only really post about living with POTS syndrome when I have good days, and people say how “well I look” or “how inspiring I am”; again, things I love, and those comments mean the world to me. But if I posted what happened most days – would I still be “inspiring” then?

Living with POTS syndrome means that on some days, I can’t stand up. It’s having to make the decision of my husband carrying me to the toilet and standing outside in case I pass out or shuffling on my bum to the bathroom and clutching the handles in my bathroom to break my fall if I pass out (it’s happened!). 

No one talks about these moments. I’m still embarrassed by these moments, but it’s my life now, and I shouldn’t be. And by the way, talking about poop in a relationship can save your life, but that is an entirely different topic!

Taking showers can be really difficult for some people living with POTS

No one talks about having to sit in a lukewarm shower because the heat makes you pass out, and so does standing up. So you sit on the shower floor, with silent tears rolling down your cheeks, praying it’ll pass soon so you feel safe enough to leave the shower.

Or laying in bed listening to your stomach growl, but knowing even if you do make it to the kitchen without any POTS symptoms, that grabbing anything more than a bag of crisps and a bottle of water is nigh on impossible without them starting.

Or catching a common cold and cough and your body shutting down completely. I’ve got a simple cough at the moment, and I’ve lost count of how many times I’ve passed out in the last few days alone.

Or laying in bed; entirely still. Anxious to move in case your POTS symptoms start. Is it really worth getting out of bed for? 

Your mind spirals until it’s just you and your thoughts alone for hours and hours.

Some parts of living with POTS syndrome are significant, and I love talking about them. I love talking about what it’s helped me achieve, the people I’ve met because of it, the sense of belonging and community, and helping raise awareness. 

But talking about how lonely living with POTS syndrome can be, how difficult it can be; how debilitating it can be are important too.

I’m coming up to my 8th year of first being diagnosed with POTS syndrome. There are no cures or “magic pills,” as I’m so often told. Yet I’m still not used to it. I don’t think I’ll ever be used to living with POTS syndrome.

There always seems to be a new symptom; or a worsening one. But positive or negative – talking about it, particularly online is therapeutic for me. This is what living with POTS syndrome means for me.

"Living with POTS Syndrome: what is it like?" is republished from No Safer Place with the kind permission of the author, Zoe Collins