Danielle, age 29, Arizona
At a young age, I never felt quite right. I had severe migraines, dizziness, difficulties exerting energy, and saw spots in my vision daily. I will never forget the day my sister told me that what I was experiencing was not normal. From there, my parents became concerned and I quickly began seeing doctors at age 12. I had no idea what an uphill battle I was facing, and the frustration, exhaustion and hopelessness quickly became overwhelming.
Medical doctors often told me how I was feeling - it was all in my head, nothing was wrong. Unfortunately, their test results came back normal and they weren’t sure how to help me. My parents helped me to push past there doubts and they could tell something was truly wrong. It was approximately 4 years of specialists and random doctors all over the state I lived before finally traveling out of state to Mayo Clinic. It was there that they quickly diagnosed me with POTS, visual snow syndrome and chronic migraines.
After being validated with a diagnosis, I quickly realized that I hadn’t been advocating for myself as I should have. All those doctors that told me I was perfectly healthy we’re completely wrong, and they were wrong for making me feel like I was the issue. From that point on, I promised myself I would never allow anyone to tell me how I feel. I realized that no one was living in this body or experiencing the pain and discomfort except me. POTS gave me a voice, POTS made me take control of my life.
Though I certainly wish I was healthy, POTS changed my life completely. I know now what is most important to me. I am able to prioritize things in my life and spend my energy doing things I know I will enjoy. I am a much more empathetic person and I always give people the benefit of the doubt. POTS taught me how important my voice is and how to advocate for myself. POTS taught me how to find the good in every situation and live in the moment. POTS taught me to appreciate the good days and know that the bad days will always pass. This may not be the life I had hoped for, but I am learning to make the most of the cards I’ve been dealt.