When POTS Is Like a Rollercoaster Ride That Never Stops

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.

Find this story helpful? Share it with someone you care about.

Related to Postural Orthostatic Tachycardia Syndrome

A black and white image of a woman with a serious, unhappy expression.

I Will Always Be Sick – Even If I Look 'Fine'

I can’t tell you enough how hard it is to have someone look at you and say, “You don’t look sick.” It becomes mentally exhausting to have people look at you and tell you that you’re “fine.” I can tell you no matter how you look at me, I am not fine. When you live with [...]
woman holding a spoon

Resilient: My Chronic Illness Photo Shoot

I did a photoshoot with Samuel Guillermo to help represent my chronic illness. RESOURCES FROM STANDING UP TO POTS Managing symptoms of POTS Preparing for your doctor appointment Suicide prevention in POTS These photos represent “The Spoon Theory” by Christine Miserandino, which is how I explain my chronic illness to others. These photos represent some [...]

How My Mom is 'the Lorelai to My Rory' as I Live With POTS

Before I begin, let me explain that this isn’t the typical Mother’s Day appreciation letter. While I know there are many great mothers out there, my mom has helped me out through everything in life – and I mean everything! I’m sure many parents can relate to this if your child has any kind of [...]
Water color image of a woman with brown hair.

When I Told Myself POTS Is 'No Big Deal'

“No big deal.” These three words mock me now. They haunt me on a daily basis. Three apparitions of a life that is now dead and buried. In my past life I was an overactive overachiever. A certified group fitness instructor, personal trainer, and health coach. I often taught three or more classes a day. No big deal. [...]