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What It's Like to Develop Anxiety Because of POTS

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This summer was perfect. I finally felt in control of my celiac disease, fibromyalgia and lupus. I was doing things I wanted to my way, and it was incredible… But then I got sick.

And after six months of evasive symptoms, I finally have an answer to the mystery that felt like even Sherlock couldn’t solve: postural orthostatic tachycardia syndrome, or more commonly, POTS. After various specialist appointments, countless blood draws and endless uncertainty, all it took was a simple test to get the answer. So here I am, almost six months after all this began with an answer it took my doctor literally a little over five minutes to stumble upon, and a week into steroids meant to help my life become normal again.

But the truth is, I don’t even know what normal is anymore.

I’ve spent so much time living a real life nightmare, that I don’t really know anymore what it feels like to not be dealing with all of this.

I have been incredibly vulnerable throughout this whole journey, but there are so many aspects of this journey I’ve kept hidden. Not only is POTS a nightmare, but the anxiety that has grown over it is unforgiving.

I spent weeks unable to eat due to the fear that I was dying. I spent months monitoring my heart rate, watching for any spikes, anything irregular. I have been so obsessed with everything involving my body that I can hardly function.

Finding out it was POTS all along was “nice,” but this has become a prison. The damage is done; the anxiety is so real.

I can’t go grocery shopping, I can’t hang out with friends, I have every hospital and urgent care mapped out everywhere I go, and to be so real right now: I can’t even shower without knowing someone is nearby.

What I’m living through right now is, quite frankly, hell on earth. It is for me, and I worry I’m making it the same way for those around me. Chronic illness is so unforgiving, so selfish, and it doesn’t care who it drags down with it. I feel like I’ve not only successfully ruined my life, but also that of those whom I care about the most.

It has been the absolute worst six months of my entire being. I would give anything to just go back to normal, but like I said before, I don’t remember what normal is. Everyone around me tells me I’m brave, I’m courageous.

But I’m not.

I live every single day with such irrational fear that I’m dying. I am so afraid that I won’t ever go back to the way I was, that this will never end. There are more doctor appointments on the horizon, more mountains to climb, and I just hate doing this. I hate dragging everyone down with me, I hate it. I’m terrified that I won’t live up to the person I could’ve been before this all started. How can I help people if I can’t even help myself?

And normally, in a post like this, here is where the author’s song would change, and they’d begin to write something positive or inspiring, but in this phase of my life, I’m not exactly convinced that I can. I can’t confidently say that I know I can beat this, that I know I’ll be able to do whatever I want to in life.

But I want to be able to do this. I want to beat this. I want to be someone everyone is proud of. I want to be the world-changer I set out to be before this started. I want to do things my way, not my illness’ way.

So, with all that being said, here’s hoping. Here’s to pushing myself to trying new things, to doing things that make me afraid. Here’s to standing up to my tachycardia, to accepting my fear, to fighting past the irrational thoughts that plague my mind. Here’s to better and brighter days.

I know there is a lot of strength in admitting you’re afraid. That acknowledging something like that is the first step to getting better. So here I am, admitting it. I’m not brave, I’m not strong, and I am so, so afraid, but I am determined to get better, so I will.

I hope. 

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Photo via OGri on Getty Images

Originally published: November 28, 2017
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