Zoe, age 17, Utah
75% of people with POTS, postural orthostatic tachycardia syndrome, are misdiagnosed with a mental health condition. I am a part of that 75%. I was told it was just "anxiety", "lack of sleep", or "dehydration". I stayed awake for hours some nights angered with how difficult it is to know something is wrong with your body and mind for years and to be told, “it’s all in your head" when I had been showing immense symptoms since the summer before 8th grade. Walking to class started to feel like hiking a mountain, and I had to start taking breaks in the hall to catch my breath
After roughly three years, I was finally diagnosed with POTS back in March of 2021. The relief that soared through my body was indescribable. I first started on Google, looking up how to manage it, any cures, and stories of others with this chronic illness. I found various POTS communities on Instagram and TikTok, and it blew my mind how I related so much to these stories and references. I finally felt seen and safe.
While learning about myself, I started thinking back and pinpointing the times this illness was affecting me so extremely in the past, and I just genuinely thought it was normal. I remembered how I would fall over in my room from lightheadedness after coming up the stairs, how dancing and running had become exponentially more difficult. It all finally made sense, and I felt strong.
As an aerial dancer, postural orthostatic tachycardia syndrome can really hold me back. People with POTS are recommended to avoid intense workouts, and aerialists are working out and training as much as Olympic athletes are. It can also be dangerous due to the fact that I am usually forty or more feet in the air.
I always have water, Liquid IV, or some kind of sodium snack on hand to maintain my flare ups. You even will occasionally find me collecting a few salt packets from restaurants and keeping them in my backpack for later events.
The road has not been easy, but I now feel more confident compared to where I was before, and I am grateful for the people I continue to meet every day on this journey.