Hearing the words “incurable” to your face is the hardest thing anyone can hear. “You’ll have to manage” well, that’s not going great either.

I’ve spent my life quitting or quietly forgetting hobbies, what difference would it make to give up more things for health?
It hits different when you’re invited places by someone and you can’t go because your health won’t allow it, so from then on, you’re not invited anywhere again.

When you finally find something you love doing, it encapsulates your every moment, then it’s ripped from you and you can’t do it again.

When everything that brings you happiness becomes torture and symptom inducing, you start to lose yourself in the loud intrusive thoughts and voices around who preach expectation.

People act like you’re not trying hard enough to deal with conditions, when in reality, you’re doing everything you can to survive in a world that’s not built for you. Systems work against you, your body also works against you on top. It is exhausting, gruelling.

The thing that gets me is that if I’m having a symptomless period of time, that automatically means I’m not disabled because I’m out there trying to make the most.

What gets me is that, people complain disabled people don’t work but when we do work, we face discrimination. We get told we should stop being lazy and get out of bed but when we’re out there doing something, we can’t be disabled at all. There’s seriously no winning at all, no matter what we do.

I would honestly love to see some people deal with trying to exist with POTS.

Not being able to sit down for long periods of time unless your legs are level with your head, not being able to stand without feeling you’re going to drop, not being able to eat certain food, sleeping upright, throwing up for hours on end, emotions leading to flares, random things leading to flares. Like, ay caramba! How dare I want some joy?!

Some will never understand the heartbreak of seeing others your age get to do all the things you love, thriving and you’re likely in bed.

To heartbreak and the twisted lessons it teaches, I’ll drink to that, oops, I can’t do that either.

It feels as though my life is full of restrictions. I miss the days I took for granted where I could actually do something. I miss not worrying.

How does one move forward? Somehow?

Editor: POTS is Postural Orthostatic Tachycardia Syndrome, described as “a chronic, debilitating disorder of the autonomic nervous system characterized by an excessive heart rate increase upon standing (tachycardia) and orthostatic intolerance.”