Invisible No More: My Journey to a POTS Diagnosis

When I was 18 years old, I went on what was supposed to be a carefree cruise vacation. But during that trip, I contracted COVID-19, and life was never the same. Afterward, I began experiencing extreme dizziness when standing, a racing heart when changing positions, and constant issues with regulating my body temperature. I was in and out of the emergency room at least once a month, desperate for relief and answers. For two years, doctor after doctor told me it was just anxiety — that it was all in my head. Eventually, I started to believe them. I took every medication they prescribed, hoping something would help, but instead, each pill made things worse.

As my health declined, I lost nearly everything — friends, relationships, my job, even the ability to drive. I felt like I was slowly watching the life I loved disappear. I was trapped in a body I no longer recognized, and I couldn’t make sense of the pain I was in. The worst part was feeling dismissed and unseen by the very people who were supposed to help. But in early 2024, something shifted. I decided I was done being gaslit. Deep down, I knew something was wrong, and I wasn’t going to stop until I had real answers.

That September, I traveled over 1,000 miles to the Mayo Clinic, desperate for clarity. After a series of intensive tests, one of the last — the autonomic dysfunction test — finally gave me the answer I’d been searching for: I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome). It wasn’t the answer I wanted. Being so young and hearing that I have something incurable was devastating. But it was also the first time I felt validated. I wasn’t crazy. I wasn’t weak. I was sick — and now I had a name for it.

Every day is still a challenge. I miss the life I had before POTS, and there are moments that feel impossibly heavy. But I’ve learned to accept myself in the now — to honor my body where it is. My biggest piece of advice to anyone questioning their health: never stop advocating for yourself. You know your body better than anyone else ever will. And to my fellow POTS warriors: you are not alone. I know it often feels like it, but we are stronger together. The more we speak up and raise awareness, the more support and hope we bring to each other and those still searching for answers.