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Finding Your Inner Advocate

Kelsey, age 27, North Dakota

July 19th, 2021 is a date seared into my brain. The date where medical providers acknowledged my symptoms were real. The date a diagnosis was given and treatment options were presented. The date where I realized the importance of self-advocacy, especially as it pertains to health. 

The road up to July 19th was tumultuous at best, as my symptoms were dismissed and attributed to my other pre-existing conditions. This is the first time in my life I experienced medical gaslighting, or denial of patient illness. A narrative experienced by many POTSies.

After three providers dismissed my concerns, I decided enough was enough. After arriving for a medical appointment unable to walk while also experiencing a high heart rate and chest pain, my primary provider came to the realization that this situation was serious. I was sent to the emergency room, where the provider educated me on the point of the emergency room - for emergencies only. This discussion made my blood boil, but I found my inner advocate and decided I was not leaving without answers. After several hours and multiple conversations, I was admitted. The story does not stop there, I would have two additional providers tell me my symptoms were psychosomatic. On day three of hospitalization, I had three providers that chose to believe me and help me. I underwent the Tilt Table Test to confirm my diagnosis of POTS. 

I am beyond grateful for the few providers that actually helped me. Although, don’t be fooled, I am grateful for the providers that challenged me to find my inner advocate. They are the reason I received a diagnosis in months compared to years. I was forced to find my voice, to demand answers. 

My POTS story is one I would never trade, as I learned a lot about myself as well as the medical community. It has also led me to a community of POTS patients, who empathize and sympathize with my experience. By sharing my story, I hope to influence POTSies to advocate for themselves. Never let anyone dismiss you and your concerns. Your symptoms are so incredibly real.

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