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Finding the Light within the Dark

Lindsey, age 22, California

The biggest thing anyone wants is answers. The thing that would explain all the madness. Why me? Why now? What is happening and why won’t it go away?

Unfortunately, not everyone gets the answers they deserve and if they do it might not be right. Therefore, I’m here to share my story so no one else has to live with uncertainty like I did for so long. I have lived with POTS for 8 years now and it was no easy feat being diagnosed. I had an array of symptoms like fast heart rate, dizziness, lightheadedness, and vision going blurry.

Every physician I went to told me “You’re fine. It’s just stress and anxiety from school and life. All your lab work is normal there’s no need for more testing”. This continuous pattern of doubt was very discouraging. How is it that the people meant to heal you are against you? Why wouldn’t they listen? To this day I still don’t have an answer to those questions, but those situations made me want to push more.

Therefore, as soon as I turned 18 years old I took things into my own hands. I found a cardiologist who listened and cared! However, COVID-19 struck, and the tilt table test I was meant to get was postponed. “What luck!” I thought. It wasn’t until 2023 that I was able to finally be diagnosed with POTS. I was so relieved to finally have an answer, but little did I know my journey was just beginning.

The two biggest obstacles about POTS are 1. Being diagnosed and 2. Creating a plan of care. Although I have my answer, my cardiologist has no idea how to address it. So once again it I had to be an advocate for my own health and find a local POTS specialist who I have yet to see. The only peace of mind I have is knowing that I’m not alone. This particular doctor has a 5-month waiting period as he has dedicated his career to the sub-specialty of POTS. Once I get more answers I will report back as I hope to help others suffering in silence.

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