Dillan

My name is Dillan, I am 17 years old living with PoTS. While there is no way for me to confirm it, there is no doubt in my mind that I got PoTS from Covid-19 in May 2022.

I went to a close friend’s middle school graduation and this was the first time I had decided to not wear a mask out. Before this I was very particular with always wearing masks, because I was terrified of getting covid again. The graduation was in a stuffy room full of hundreds of people and shortly after this event I got covid. This was the worst strain of it I had developed; I lost my sense of taste and smell, had a high fever, and was sick for two weeks. Even after I had recovered it took even longer to regain my senses and I felt exhausted. I had long covid.

        After I had thought I recovered, I started feeling more exhausted, lightheaded, and eventually I could barely leave my bed. Over the next couple months and then years, I got worse and worse. By tenth grade, 2024, I was going to school around three times a week if I was lucky. I had countless doctor’s appointments where they would tell me over and over that nothing was wrong with me. I knew that wasn’t true though because the way I felt wasn’t normal. My symptoms made my anxiety worse when it came to going to school, and the anxiety made my symptoms worse. It was an endless cycle. At this point my symptoms were frequent light-headedness only relieved by laying flat on the ground, heart rate usually over 150 bpm, shortness of breath, heart palpitations, blurred vision, debilitating exhaustion, shakiness, muscle weakness, heat and exercise intolerance, and more.

        I became severely depressed because I couldn’t do the things I loved or see anyone anymore. I was very athletic growing up and I had grown to be completely out of shape because of this “mysterious illness”. By the time I was in tenth grade, I started looking for answers myself and I knew I had PoTS way before I was diagnosed with it. I even had a cardiologist visit in January 2024 where the doctor told me that there was no way I had PoTS, without even testing me.

        In June 2024, I was getting different tests done at National Jewish Hospital throughout the week for breathing issues, which is where they finally diagnosed me with PoTS. Even though that wasn’t the purpose of the visit, it turned out that my breathing issues derived from my PoTS.

        Getting the diagnosis didn’t “fix” me or automatically make me better. It’s February 2026 and I STILL have terrible days where I can’t do anything. Even my good days aren’t as great as they were before my illness. But I am slowly getting better. I’m on the medication, Midodrine, which I have found to be helpful, and my heart rate rarely surpasses 130 anymore for no reason. I struggle with chronic fatigue, joint pain, light-headedness, bladder and gastrointestinal issues, and more. All of this is linked to PoTS because against common conception, PoTS can affect the whole body because it messes up the automatic system. I am doing better but I am still struggling so much so I hope with every part of me that I continue getting better.

        PoTS is a lot more common than people think and it is important to me to spread information and awareness about it so other people with PoTS don’t have to struggle as much as I did getting a diagnosis. Also, I want people to take it more seriously because it is a chronic illness and can absolutely be disabling. I am luckier than others because I don’t faint and I can walk most of the time, but I am planning on getting some type of mobility aid to improve my quality of life. I hope that everyone with PoTS will be able to live a life worth living and they will be able to manage it well. PoTS is difficult but we got this!
<3 Dillan