Lily’s Story

POTS

 It started in my junior year of high school, on a day that was supposed to be completely normal. I was sitting in class, taking a test, when out of nowhere a sharp, unbearable pain hit my stomach. Before I could even process what was happening, I passed out.

      I was rushed to the hospital. They ran tests, did an EKG, and told me everything looked “normal.” I was sent home to rest, but something wasn’t right. The pain didn’t go away it kept coming back, stronger each time. We went to a different hospital, hoping for answers, but I was told it was “just anxiety.”

     The next day, everything got worse. I couldn’t move. I couldn’t get out of bed. The pain had completely taken over my body. When we went back to the hospital, things suddenly became urgent. I was rushed into emergency surgery to remove my appendix. They said it was appendicitis.

      After surgery, I went home expecting to feel better. I thought that was the answer that everything would finally go back to normal. But it didn’t. The pain never left. That’s when the long journey really began.

     I went from doctor to doctor, specialist to specialist, test after test, searching for something anything that could explain why I still felt so sick. Eventually, I was diagnosed with celiac disease. At the time, I was eating a lot of gluten, so it made sense. I finally had an answer, and I felt hopeful. I completely cut gluten out of my diet and waited to feel like myself again. But I never did.

     Instead, I got worse. I became bedridden. Simple things like going to the store felt impossible. My body was constantly in fight-or-flight mode, like I was stuck in survival. Panic attacks started happening multiple times a day. I had to take medical leave for the rest of my junior year.

        Senior year came, and I transferred to a smaller school, hoping a fresh start would help. Even just getting out of the house each day was a battle, but slowly, I started to push through. It wasn’t easy, but I made friends. I even went on vacation. For a moment, it felt like I was getting pieces of my life back. I graduated.

      After graduation, my boyfriend of three years and I moved to another state. We got jobs. We were doing well. Life felt like it was finally moving forward again. And then, the symptoms came back. 

      I started feeling sick all over again just like before. I went back to doctors, switched providers, and kept searching for answers. That’s when I was tested for POTS and finally diagnosed.

     I’m still new to this diagnosis, still learning what it means for my body and my life. There are days when I feel like I’m improving, like I’m getting stronger. But there are also days when everything comes crashing back, and I’m reminded that this journey isn’t over yet.

     I’m still searching. Still fighting. Still learning how to live in a body that doesn’t always cooperate. But I’m here. And I’m not giving up.