Bellefonte Area School District

You can listen, here. She also writes:

When I was 10, I won the Pennsylvania state swimming championships. But that wasn’t enough for me. I wanted to be the best. I wanted to be an Olympian. But now I want to be the best for a different reason. When I tell my story, I want people to listen. I’m not the best yet, but I still have my story and I am going to tell it.

I’ve been diagnosed with Dysautonomia. In layman’s terms: anything automatic for most people from the dilation of the pupils to blood pressure and heart rate, my body struggles with regulating. It might not sound bad, but it forces people to quit jobs, homeschool and give up athletics. Some people are even hospitalized. It takes over lives, and it took over mine.

It started the winter after I won states. I was full of confidence and ready to prove myself. I came back and worked harder than ever. I started practicing twice a day with an older swimmer, and I loved it. I was standing on top of the world and yet something still managed to knock me down. I started cramping up in practices. I went to a nutritionist, yet nothing changed. Sometimes I would get headaches, and some days I would be so fatigued I could barely go to school. But I wasn’t concerned. I thought that I could deal with it. And I could, and I did. Until I couldn’t.

I was doing an easy practice -- a set I had done many times before. After finishing, I became extremely dizzy. I got out of the pool and collapsed immediately. The next thing I knew I was shaking uncontrollably. I was fully aware of what was happening, but had no ability to stop it. Everything hurt -- my head, my hands, my legs, my stomach. I was screaming in pain. And then I was loaded into an ambulance.

At the hospital, I was told I had pneumonia. I was treated with antibiotics and an inhaler, as well as being put on bed rest for a few weeks. The next day I went to school like any other day. Almost nobody had noticed that I was gone.

I got back in the pool a month later. I started training again and even though I didn’t feel great, I was determined to be great. So I worked even harder, which lead to me falling even harder. This time I stayed overnight in the hospital. I was diagnosed with myocarditis, or swelling caused by a viral infection of the heart. This diagnosis didn’t even make sense as the doctors had no evidence to base it on. Yet, I still wasn’t allowed to swim for another month.

I got back in time for district championships. I only qualified for states in one individual event and a relay.

Three days later I was in the ER again -- my mom standing at my bedside refusing to leave until they told her what was wrong with me. A week before, a doctor had refused to offer me medication for a minor flu, claiming that I was a perfectly healthy kid. After that my doctors finally did something. I was referred to a heart doctor, lung doctor, brain doctor,  and an autoimmune and musculoskeletal doctor. 

The heart doctor looked me in the eye and told me I was on drugs. I assured him I wasn’t, but he referred me for testing anyway. The lung doctor finally told me something that made sense. A breathing disorder called Vocal Cord Dysfunction. When someone with VCD breathes in, their vocal cords constrict so air catches in their throat every time they breathe in. The brain doctor finally treated me for my migraines. I had had a migraine 24/7, for six months.

My autoimmune doctor was my savior. She was the first to tell me what was really wrong with me. She diagnosed me with Postural Orthostatic Tachycardia Syndrome, or POTS. POTS is actually a cardiovascular disorder that falls under the category of Dysautonomia. It has nothing to do with the doctor’s field of specialty.

It took six months to finally get help.

For those six months, I was almost completely disabled. Yet no one in school noticed because I didn’t look sick. I would be in the hospital one night feeling miserable and then come to school the next day feeling exactly the same way. Dysautonomia is considered an invisible illness. It’s more like an invisible wall. I couldn’t compete at states that year or a zone championship I had qualified for that included seven states. I didn’t truly train for another year, and when I did, I felt awful. The same things would still happen to me. Some days I can’t even get in the pool. But every day, I keep trying.

Going through this as an 11/12-year-old, it was hard to comprehend everything. The isolation I felt was so intense. Getting anyone to listen was so hard, even my doctors were difficult to convince. I would walk around in a daze because of all of my symptoms, and I just didn’t feel connected anymore. Hanging out with my friends was so fatiguing that eventually I just stopped. Even now that I feel a lot better, it is still hard that my illness is invisible. I used to be the fastest in the pool, but with so much to deal with now, winning is a lot more complicated as I hardly ever feel well in a race. But to everyone else, I look just like a normal girl. Some handicaps are very visible, such as an amputation, but mine is invisible. Some of my friends didn’t even know I was sick until I told them a year later.

My teammates always ask me why I still swim even though it makes me feel so terrible. I don’t say this, but it is because I want to be an example. I want to show all of the girls like me that I can overcome, and so can they. We don’t have to give up what we love. We need to fight for it. We need to fight for ourselves. Because illnesses like Dysautonomia often go ignored. One out of every 100 girls will develop some form of Dysautonomia, but the average diagnosis rate is six years. It is one of the most ignored disabilities. Doctors who do know about it often think it is fake. But if I wanted to fake an illness I would choose something that people would believe. And I definitely wouldn’t have chosen to endure four ambulance rides, many medical different tests and see 10 different doctors. I also wouldn’t have chosen my daily routine of taking medicine four different times a day and drinking around 300 ounces of water, which converts to about nine liters or three-and-a-half gallons.

But someday, people with Dysautonomia won’t have to go through what I and so many others have to go through, because I am going to change it. I am going to be a biomedical engineer, and I am going to make things that help people with chronic illnesses. Everyone has a chance to do something, and I am going to take mine. Dysautonomia took – and still takes so much from me. But I am going to make it pay. And not just for me, but for everyone who has been affected. I will fight for them.