Dear Doc, it was not anxiety
It’s another day at school. In class, I watch the clock, waiting for the bell. When it rings, I jump up but suddenly feel dizzy; everything slows down, my heart races; then—nothing. I wake up on the floor, my classmates staring. My heart is normal again, but I’m embarrassed. The pity in their eyes stings. I stand up, face red from embarrassment, and slowly walk to the bathroom. Staring in the mirror, I feel frustrated with how my life has spiraled out of control since my PoTS diagnosis.
Living with Postural Orthostatic Tachycardia Syndrome is a constant battle. I could sit here and bore you with medical terms, but I want to show you the experience with PoTS as an individual. Each day brings challenges that wear on the body and mind. Standing up after sitting often triggers dizziness, making simple tasks— waking up or meeting friends—daunting. These symptoms affect self-images; making everyday activities; drills, requiring careful consideration of fatigue, hydration, and how long you can stand without dizziness.
One symptom of PoTS is syncope; fainting, which affects 30-60% of those with the condition. These sudden episodes leave individuals feeling vulnerable and anxious daily. Waking up confused and alone after fainting can be terrifying, especially when no one stops to check if you’re okay or even breathing. This unpredictability and instability creates emotional strain, with isolation and fear.
Despite the numerous cases, PoTS remains under-researched. According to the Mayo Clinic, cases increased from 1.42 to 20.3 per 1,000,000 people, since COVID-19; 14.3-fold rise, with diagnosis wait times now exceeding 2 years.
Many doctors are unfamiliar with PoTS, leading patients to multiple specialists before receiving a diagnosis. A study of 4,800 PoTS patients found that most were diagnosed only a year or more after their first visit, the average diagnostic delay is nearly five years. I was often told my struggles were in my head, seeking attention, dramatic, theatrical, and that my issues were anxiety. This IS medical malpractice. After being turned away by numerous doctors, the Mayo Clinic finally diagnosed me and helped me find the medication I take today. Their professionalism and kindness brought me to tears, I finally had a name for my struggles and a path toward healing.
Attention ALL medical professionals: PoTS is a serious condition that greatly affects patients’ lives. Remember your Hippocratic Oath, which emphasizes patients well-being and prevention of harm. As healthcare providers, your duty is to assist and protect those in need.
My personal experience with PoTS has been transformative and challenging. I urge all physicians to approach patients who are affected by PoTS with diligence and empathy. It is imperative to remain committed, actively listen to their concerns, and utilize your medical expertise to seek appropriate solutions. This is an emerging health issue, and there is an urgent need to explore effective strategies to address it, as well as to enhance our understanding of the disease. Help, don’t hurt.