INTRODUCTION
My name is Claire and I'm 22. I'm a senior at the University of Pittsburgh, majoring in microbiology and minoring in chemistry and applied statistics. After college I am planning to go to medical school. From the exterior, my life. looks pretty ideal--don't get me wrong I have a pretty good life--but what you can't see is that I am living every day with pain from over twenty-six concussions, postural orthostatic tachycardia syndrome, Crohn's Disease, mast cell activation syndrome/mastocytosis, rheumatoid arthritis, and frequent infections due to the fact I have Primary Immunodeficiency Disease. None of these conditions are visible but they are 100% real and impact me every day. My goal is to make people aware that not all disabilities are visible but that does not make them less valid. MY STORY Soccer was the love of my life. I lived and breathed soccer before I could walk. As a baby, my mom would only get me to eat by taking me to the park down the road from my house to watch “the big kids” play. I was so excited because in 2002, I was three and could finally play organized soccer. This was the first time I experienced the ecstasy of scoring a goal or making a perfect pass. This was also the first time I experienced heading the ball. I realized that I had potential by age six and was invited to try out for my club’s developmental academy. I was so excited the day I found out I made the team. The next spring, spring 2007, I traveled with my family to Upper Moreland, PA to play in my first tournament. I was hooked. I developed my skills but I developed my love for the game even more. I was then able to make the top travel team that same spring for my club. By the fall of 2011, I was in seventh grade and this was when we were first allowed to play for our school teams. My friends and I had been dreaming about this day since fifth grade. Unfortunately, I’d already experienced at least one concussion and suffered from daily headaches before I graduated from elementary school and by the time I was playing on my seventh grade team, I’d already had probably three concussions. I barely knew what a concussion was. I knew it was something that happened to NFL players but if I had to take a guess at which body part concussions effect, I probably would have guessed the knee or more broadly, the leg. My first concussion of seventh grade was during a soccer game in gym class. Before the game while kicking a ball around with my friend, a boy in the class tackled me. I don’t remember hitting the ground. The next thing I remember is my gym teacher’s voice. He was talking to me and then some of my classmates. When I was able to speak, I told him I was okay and just bruised my arm. I refused to go to the nurse. I had a soccer game later in the day and I couldn’t go home for what seemed so mild. We then went outside to play a game of soccer. During the game, I was slide tackled. I slammed the back of my head. When I got up, I had a pounding headache and was super nauseous. My teacher knew something was wrong and he kept asking me if I was ok. I told him that I was fine, just a bit tired. When my class was going back inside, my friend pulled me aside and asked if I was ok. I told them I thought I was going to throw up. A few minutes later, I did. I brushed it off as nothing. Again, I had a soccer game to play. Later that school year, January 2012, I was playing floor hockey in gym class. I don’t really remember how I went down or why, I think my gym teacher accidentally pushed me, and I don’t remember hitting the ground. When I came to, the world was spinning. I kept mumbling incoherent words to my friend. Another friend looked at me crooked and told me I looked like I was nauseated. I was. My teacher kept asking me what was wrong and I told him I rolled my ankle. I was not born to be an actress and this was proof of that. When my teacher suggested I go to the nurse I refused. He kept telling me to go so I tried to run away from him. That didn’t go so well and he found me at my next class and made me go. The nurse sent me home and my mom took me to the doctor. Low and behold, a concussion is not a knee or leg injury but a head injury. I now knew what parts of the body were affected and the symptoms, but not how serious and dangerous concussions could be. I was told I wasn’t allowed to take tests. My math teacher did not understand this so he made me take it anyways. When I refused, he called the principal and she made me take the test in her office. I threw up and passed out in her office (serves her right). I missed about six weeks of soccer but I finally returned when I could trick the doctors into letting me go back. I was not symptom free. In December of 2012 I was in eighth grade. I’d had more concussions since January of 2012 but had played through them. On December 3, 2012 I sat in my eighth grade history class. On December 5, 2012 I was sat up against a wall in my school. What happened on December 4, 2012? Even to this day I can’t give you a fully accurate answer because the truth is I don’t know. All I was told was that at soccer practice we had to practice indoors due to snow and I ended up falling and smashing my head into a wall and then collapsing to the ground when I got my head again. Apparently when I can to I was crying and when they asked why I started talking about mice. My speech was slurred, I was vomiting, anything that wasn’t pitch black was too bright. I saw the doctor a few days later and he diagnosed me with a concussion. He said I also exhibited signs of a bleed. There was also definite swelling in my brain. I missed three months of school and ten months of soccer. I went through months of rehab and therapies. On the days I showed up for school, I spent most of my time sitting in the nurses’ office. When I returned to soccer I wasn’t symptom free. I don’t see a point in what if’s but I do think it’s important to educate through my own mistakes. That should have ended my soccer career and if I thought about quality of life in the future, I would have stopped. I was in love with soccer. I breathed for soccer. As a 13/14 year old I never thought of what my life would look like in 6 years. It’s now 6 years and I still suffer with all my symptoms everyday. There’s so much I wish I could’ve told my younger self. I can’t go back though. Be honest about your symptoms and remember life is more than sports. I wish I learned my lesson. I couldn’t play varsity soccer my freshman year of high school but I did return to my club team later that fall. My first game back I noticed my double vision and then blindness in my left eye were affecting how I played. I learned how to cope with my faulty vision. I also always lose sight in my left eye when my heart rate goes up. Sophomore year, fall 2014, I played soccer for both my club and high school varsity. At varsity practice, we’d stand at half field and just punt the ball the whole time. If one person didn’t head the ball, we all had to run while holding a ball over our heads. I suffered at least seven concussions just that fall and then two that winter with my club. In May 2015, I was told I’d never play soccer again. That summer I went to camp as always. During a game of team handball, I was knocked out. This was the hit that pushed me over the edge. I missed my entire junior year of high school. I then had to defer and transfer. I graduated from the Shipley School in 2018. Even the fact I graduated high school is miraculous because there was a time when my family, my doctors, and I did not think I would ever be able to return to a normal classroom. I was so excited for college when I entered my freshman year at the University of Pittsburgh. But college has not been smooth for me. Early on in freshman year I was put on a medication which caused my liver, kidneys, and pancreas to fail simultaneously. As soon as I was starting to regain organ function, I began feeling really tired and was running high fevers. I just felt off. I went to student health and found out I had mononucleosis. Due to the organ failure, I had complications with mono and had an enlarged liver. When I returned to campus after Thanksgiving, I had only a week or two before finals. The Monday of finals week I was feeling really sick and was having extreme abdominal pain. I brushed it off as stress but then the next day, the pain was worse and I couldn't keep anything down. My friend dragged me to student health and they sent me to the Emergency Department because they thought I had appendicitis. The doctor in the ED told me that I just had period cramps. Fast forward to that Friday, I had a 104 fever. I took all my finals that week despite having appendicitis. A week after developing the appendicitis, I had an appendectomy. I expected that the worst was behind me in terms of my health but I was wrong. In February I had developed pneumonia and bronchitis but never seemed to get better. I was hospitalized for a week because there was a concern I had leukemia or lymphoma. Thankfully I did not have either and just had a nasty kidney infection resulting in glomerulonephritis. I still never really got better and was told that I had an eating disorder and if I ate more and went to therapy I'd feel better. I'm young and female so I fit the eating disorder box but nobody was willing to look further. In addition, freshman year I was hospitalized seven times for anaphylaxis. There was no explanation for it; I was tested for and tested negative for all allergens. The health complications continued into my sophomore year. The anaphylaxis episodes continued. And still, no answers. Finally I was diagnosed with PIDD and mastocytosis in May 2020. I was also having severe pain every time I ate (that had been going on for pretty much all of college) and I was referred to a GI. In July 2020, the GI diagnosed me with a severe and atypical form of Crohn's Disease. Not having a diagnosis made me feel as though I was crazy. Having the diagnosis just validates the fact I have felt so bad for so long. I also know what it is like to feel alienated by a disease and my message is that you are not alone. If you know someone with chronic illness/pain, reach out to them and see how they are doing. Make sure they know that you are in their corner. Having support from my friends and family has made this process so much easier and every day I feel so grateful for the people in my life. |