What I Learned After Being Diagnosed With POTS

My doctor has stopped with the surprised charade every time I explain I’ve passed out in the week since seeing her – surely it can’t be a surprise when you’ve been diagnosed with a severe cardiac dysautonomia. Scratching your head? I know I was when I first heard those words. Basically, my body goes into panic when I’m upright, and doesn’t know how to respond appropriately (seems on brand for me). My heart rate spikes, my blood pressure tanks, and I have become familiar with waking up on the floor after a fainting spell. It’s not all doom and gloom though. Who needs psychedelics when the room spins all the time?

All jokes aside, living with severe POTS has become a challenge I’m exhausted fighting. Every day brings the same carousel of intolerable symptoms: dizzy, pain, nauseous, fatigue, overwhelm. Despite this, living with POTS has taught me so much about myself, and the world around me.

October marks Dysautonomia Awareness Month, and in the spirit of raising awareness, here are some things I’ve learned after being diagnosed with severe cardiac dysautonomia.

1. The support of mobility aids for POTS totally outweighs the perceived ideas of what others might think of you.

I’d love to say that my dignity was silent at the conversation on mobility. Nope. I held out on accessing mobility aids for years because I feared what others might think or believe about me. As a young adult, the prospect of using mobility aids scared me. I was scared for my reputation, for my career, and for my life. I didn’t want to lose my friends, and I didn’t want to give others a reason to bully me. Agreeing to use a wheelchair in an almost-permanent capacity was a decision I feared, but ultimately, I’ve been able to attend university properly for the first time in a long time. My wheelchair is my saving grace, and I have not enough gratitude for it keeping me going on the days where my body isn’t strong enough to do it alone.

2. Asking for help in life with POTS / dysautonomia is no point of shame.

I have spent many, many hours in the local emergency department needing urgent rehydration. I could drink the local dam dry and still be dehydrated. That’s just one of the simple joys of POTS. Every so often, I feel like part of the furniture, I’m so familiar with the staff. But on days where my heart rate goes from 52 to 167 on standing, I need the help. So, despite every nervous, embarrassed fiber in my body, I ask for it. I ask for help. My POTS is teaching me to take challenges gracefully, and to accept help without being embarrassed or apologetic for my medical needs.

3. My life is mine to live, freely.

What I have learned, most valuably, is to be gentler with myself – to be softer in the process of learning and understanding how to navigate my life around my medical needs. I am coming to understand that life will work in whatever wonderful way it wishes to and the best I can do is allow it, simply, to just be. Someone very dear to me, told me, “LLTTF” (live life to the fullest). I have contemplated this for some time, and it finally occurred to me that living my life to the fullest means accessing the assistance I need, being free in my Disabled identity, and showing up for myself in every moment. Living freely and fully in this body, and in this life, is not anyone else’s experience to define. My disability does not undermine who I am, my intelligence, or my creativity. My disability adds to the endlessly exciting mosaic that is my life. My life.

Being diagnosed with a severe cardiac dysautonomia at 22 and becoming an almost-permanent wheelchair user was never what I had imagined for my life, but the lessons it has offered me continue to shine through in the dark moments. I am forever astounded by what my body can achieve, even in its limited capacity.

This Dysautonomia Awareness Month, I’m celebrating the miracles of my Disabled identity. What are you celebrating?