Living with POTS Syndrome

Living with POTS Syndrome: what is it like?

Unless you have a chronic illness, it’s hard to even imagine what living with POTS  syndrome (Postural Tachycardia Syndrome) is like. 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 one, there are so many forms of chronic illness, and varying levels of severity, that it’s hard to relate even then. This is my story about living with POTS.

And the posts or tweets that I do see on chronic illness are 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 posts, and I regularly write them myself. But you never get to see the ugly side of living with a chronic illness, living with POTS. Reality.

I only really post 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, and 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.

Or 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 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 symptoms start. Is it really worth getting out of bed for? Your mind spiraling 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; helping raise awareness. But talking about how lonely it can be; how difficult it can be; how debilitating it can be – those things 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 it. There always seems to be a new symptom; or a worsening one. But positive or negative – talking about it; in particular online, is therapeutic for me. This is what living with POTS syndrome means for me.