The Mighty Logo

When POTS Is Like a Rollercoaster Ride That Never Stops

The most helpful emails in health
Browse our free newsletters

Chronic illnesses aren’t a gift, they aren’t something I wished for, but I’m beyond thankful for all of the opportunities they have given me. POTS (postural orthostatic tachycardia syndrome) isn’t something I wanted or something I would wish on my worst enemy. It is my worst enemy. Most days I’m not able to go out on my own without being scared something might happen, like passing out.

My life has been turned upside down since being diagnosed. I’ve been getting more and more symptoms that are non-POTS related so yes, I am at a loss. I call doctor after doctor trying to get appointments, just to get a little bit closer to an answer. I’m more than willing to drive hours to see a specialist just to get those answers. This isn’t something you can get a medication for and go on with your life. You need to try medication after medication and you may develop more illnesses or be allergic to something. It’s a rollercoaster that never stops.

Something I’ve learned is: when I have a bad day, so what? It’s all a part of my rollercoaster. I am beyond thankful for the people I have met and the experiences I’ve has so far. Here’s are a few:

I went to one POTS doctor two months after my diagnosis to see if he could help, since I didn’t have a specialist (and he was at a great hospital). But he told my mom and I that he had only just started and didn’t know much. He and his nurse told me and my mom that I just need to drink water and work out. They didn’t want to give me any medication since I was already on one for my POTS (which I told them didn’t work). After the three-and-a-half-hour appointment, my mom and I walked out of there and just gave each other “the look” that we were never coming back since we already knew what he told us and more. We had done our research.

I have also made so many friends that are going through the same thing as me, so we can relate to each other. It’s amazing! Without this, I would have never met such inspiring people.

The last experience is driving to get my service dog prospect. My mom and I both decided that I needed some independence back. We drove seven hours with our two dogs to Missouri to get my new four-month-old golden retriever puppy Harlow. It had previously rained a ton and there were a lot of road closures. We didn’t know if we were going to make it all the way there till the day we were leaving. Luckily, we got all the way there with no mishaps. It was super fun. It was a time to forget about my POTS and have fun. Even though POTS isn’t something I want, I wouldn’t trade the experiences I’ve had for the world.

If you’re wondering why I told you those stories, it’s to show that just because life can throw shitty things at you doesn’t mean your life is over. My life is obviously completely different but I wouldn’t change it because I’m learning how to fight. If you ever feel like there’s no way your life can get better, I promise it can. There’s always at least one positive out of one negative. Even though POTS isn’t curable, it is treatable. You can live life to its fullest on your good days. Just remember the rollercoaster of chronic illness never stops; you just have to fight whatever stops you in your tracks.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Ingram Publishing.

Originally published: May 22, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home