Juliet’s Journey With POTS: Advocacy and Hope

At the time that I am writing this, I have been on three medications in the last three months that are supposed to at least do something to control the symptoms and the pain, and every one of them has come with strange side effects and anxiety until I cry that I cannot possibly take this medicine anymore. That is why I want to share my story, because I want people to know that I think persistence will pay off.

My journey with POTS most likely started with a case of COVID in the summer of 2022, and even though I was asymptomatic, this most likely left me with my POTS and other chronic illnesses. At first, I genuinely had no idea what was wrong with me, and that left me feeling scared and alone, like I had to convince people that I was truly sick because, to the outside world, I still looked like the same person that I had been before.

The first year that I was sick, I struggled in school a lot because I was constantly distracted, wondering why I was dizzy and nauseous, and my schoolwork ended up taking a back seat to chasing my constantly changing symptoms.

It took me two and a half years from the onset of symptoms to my diagnosis in a cold doctor’s office in Baltimore, and in that time, it felt like my world was spinning constantly. It was hard for me to imagine what life would look like with a diagnosis that would never go away, especially one that seemed like it had limited research and treatment. I dreamed of POTS being an easy thing to fix, where I could just take a medicine and I would feel better, but the new symptoms kept coming and my world kept changing.

I realized that if there wasn’t medication to manage POTS, I would have to use my hopes and dreams to manage it sometimes. I want to be a Broadway actress when I grow up, and at first I thought that POTS would take that dream from me, but then I realized that it would only take my dream if I let it.

I danced even when my symptoms felt unbearable, and over time I figured out small things that I could do to help my symptoms. I found my favorite way of lying on the floor with my feet up after a dance class and the best electrolytes to drink after I belted out a song at an audition and was gasping for breath. I found that if I included POTS management in my dreams, and in turn in my daily life, it felt just a little bit more manageable every day.

Six months after my diagnosis, I realized that my journey would not have been possible without some of the things that I had to figure out for myself, like which resources were the most helpful and what to say to actually catch a doctor’s attention. I knew that I wanted to work on spreading these resources and my advice so the next person who got a POTS diagnosis would not be as scared as I had been, because they would know that people were on their side.

I compiled my favorite resources and my best advice into a cute blue brochure, and after quite a lot of editing and many failed printouts, the first time I held that brochure in my hand felt like the greatest moment in the world because I was going to be able to make somebody else’s diagnosis a little bit easier.

Here is some of the text from my brochure:

Will you have a moment where your friend or some extended family member stares at you and says, “What’s wrong with you again?” Probably the answer is yes, and you are going to use that as a moment to practice explaining the outline of your illness. You do not have to tell every random second cousin everything about your illness, but I have found a lot of support and a lot of joy in being able to talk to my family and friends.

It will seem hard at first because you will feel like you are explaining over and over, but eventually I found that the more people who understand, the more people you have in your corner going forward.

At the start of your journey, the best question, or at least so I found, is going to be, “What am I going to do tomorrow when I get out of bed?” not, “What is my wedding in five years going to look like for me?” Every day is going to be a journey, and one of the first things that I learned is just to go day by day. Today I am going to go to the grocery store. You got this!

You are doing amazing if you got out of bed today, and you are doing amazing even if you just thought about getting out of bed today. The smallest things are going to start to matter and start to give you joy as you go along on this journey.

Yesterday I had this amazing piece of coffee cake and I did not feel sick after, and honestly, those are the wins that matter sometimes because there is not a treatment for dysautonomia-related chronic illnesses, and so instead I chased the joy that the world would give me while I fought. Joy in things like coffee cake.

So go find your Broadway dance classes and your coffee cake. I promise there’s joy in the world after a POTS diagnosis!

Juliet