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Empowered by the Diagnosis

Lizzy, age 14, California

Initially, my POTS diagnosis came as a shock.  However, upon reflection, the signs and symptoms may have always been there. 

I hadn’t been feeling well since 2020. I was fatigued and achy all the time. My stomach often hurt and I suffered from nausea. As is common with so many POTS patients, my doctors blew me off at first, labeling me as having anxiety and stress, saying it is totally normal for someone in middle school. “COVID is making everyone crazy,” they said. 

My parents advocated for me and got me in to the right doctors. In Spring of 2021, I was diagnosed with juvenile arthritis. I felt relieved! It was not all in my head.  I thought the mystery was solved. But I was wrong.

In June 2021, I received the COVID vaccine. The next day, I felt short of breath and my pulse was constantly racing, way over the normal rate of 100. No matter what I did, even putting my face in ice water, I couldn’t bring down my pulse. Off to the ER I went. I spent two days in the hospital undergoing test after test to see why I could not shake the tachycardia.  

Baffled, the hospital had me consult with a pediatric cardiologist who specialized in electrophysiology. Finally, I was told I had POTS, which was “annoying, but not life threatening.” Once again, I felt a sense of relief that I was going to be okay! When the doctor explained exactly what POTS is to me, I wondered if I always had it or if the vaccine triggered it. For sure I was not feeling well in the past, but was that from the juvenile arthritis or POTS? I will never know. 

Like many POTS patients, some days are good, some days are bad. I struggle at times with the fatigue, pounding heart, shortness of breath, dizziness and nausea. I have learned to listen to my body and slow down when I need to. I try not to over-schedule myself to allow myself down time if needed. I feel empowered knowing my symptoms are real. 

I hope to let other kids with POTS know they are not alone. Their daily struggles are real. Knowledge is power. 

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