Lyme Stories - Charity

It wasn’t until being forced to see a doctor after an ambulance ride that I started to see myself as sick. Before that, I guess I was just too stubborn to admit I needed help. I don’t remember having a tick, but I remember starting to have symptoms around the age of 14. I should have paid more attention to those symptoms and gone to see a doctor, but instead, I kept pushing my body and having fun. I joined the basketball team my freshman year and the track team my sophomore year but ended up having to quit both halfway through the seasons because my body couldn’t keep up. Even then, I refused to believe anything was wrong with my health. Instead, I attributed having to leave the teams to being weak and a quitter. I had seen family members struggle with their health, and I didn’t want that to be me.

It wasn’t until my junior year of high school that I started to pay attention. I seemed to miss more school than I attended, and I left inside an ambulance on multiple occasions. Where before I could convince myself that my poor health was really just a lack of strength, now it was clear that something was wrong. I saw a different doctor or had a new test done every single week, but nothing provided any answers.

By my senior year of high school, we had slowed the search for a diagnosis because, honestly, we had run out of ideas. By November, I was too sick to attend school any longer, so I did it from home. It was hard to be away from school and my friends when I didn’t even know the reason why. I had been seeing a new doctor at the time who was the only health professional I ever saw who I genuinely did not like, which is annoying now because I owe a lot to him haha. I had a nurse friend who suggested I get tested for POTS, which is a heart syndrome, and I asked him about it. He said that he didn’t know what POTS was, but that I should just forget that and get tested for lyme disease instead because his brother is a lyme doctor. He was so arrogant and rude about it that I almost didn’t get tested just to spite him. And besides, I had seen dozens of amazing doctors who never mentioned anything about lyme disease, so why should the most unlikable one be right?

Luckily, I put my pride aside and ended up getting tested for both lyme and POTS. I truly did not believe I had lyme disease, but I got tested anyway because I had been getting tested for everything. I remember telling my mom that I couldn’t wait for the lyme test to come back negative so that doctor would be brought down a few notches (real mature, I know).

A few weeks later on December 11th of 2013, I received a diagnosis of the heart syndrome called POTS and had kind of forgotten I had been tested for lyme. I remember feeling so happy that I finally found something wrong, and I felt nothing but hope for the future. Later that night, the phone rang with the results of the lyme test. My mom answered the phone, fully expecting the familiar news that everything came back normal, especially since I had already found a diagnosis. I knew just by the look on her face that I had lyme disease. It wasn’t until later that I learned the heart syndrome was caused by the lyme spirochetes and knowing about both was a blessing. But at the time, finding two illnesses on the same day didn’t feel like a blessing. Instead, I felt overwhelmed and afraid for what this all meant for my future.

When I think back, I am amazed by my resilience and strength. I think if I knew how long my health journey would become, I would have given up on that day in 2013. But hope is what has kept me going. Hope that a New Year, a new treatment, or a new doctor will bring me health. I’ve had weeks where I feel completely healed, and I’ve had months where I’m not sure I will ever be able to walk up stairs again. I wish I could say the times of healing have been more constant than the times spent in rock bottom, but that hasn’t been the case. In both situations, however, I’ve tried to cling to hope while still enjoying today, no matter how crappy it may seem. Because although I haven’t accepted that I will be chronically ill forever, I have accepted that there will always be something hard. If it isn’t lyme disease, it will be something else that I wish I could change or make go away. So I try to find the good—the little joys that make each breath worth it. I’m not perfect at this, and I sometimes fail to see anything positive at all. But I’m trying—and that has made all the difference.