_{By Megan Tate | July 17, 2023}

My journey with Systemic lupus erythematosus began back in 2013. My symptoms painted the picture of a common viral infection known as Mono. I was experiencing symptoms such as fatigue, swollen lymph nodes in my neck, fever, swollen spleen and a skin rash. I had an opportunity to spend the day with female astronauts at Kennedy Space Center. This was an exciting opportunity as it was a once in a lifetime opportunity. As I was getting ready to leave, I ended up passing out. My mom took me to the pediatrician instead of going to Kennedy Space Center.

My pediatrician was planning to treat Mono but wanted to confirm this viral infection with a blood test. A few hours after I got my blood work, the results came back negative for Mono. My white blood counts and platelets were extremely low. The pediatrician instructed my mom and I to go straight to the nearest children’s hospital. This would lead to a direct admission to the pediatric oncology floor.

First Hospitalization

My mom did her best to keep me calm and downplay the floor I was being admitted to. As a 14 year old, I did not know what the word oncology meant. I remember the moment I searched for the definition of oncology right after being admitted to the oncology floor. I looked at my mom and asked “do I have cancer?”. This was a tough moment for my mom and I as we waited for answers from doctors in different specialties. I was discharged from the hospital on Sunday. That day was spent with my neighborhood friends watching movies and not doing any physical activity. My platelets were so low that I could start internally bleeding from the smallest bump. 

I went to bed that night and woke up in the middle of the night with a 102 degree fever. My dad took me back to the children’s hospital. We spent the night in the emergency department before being readmitted to the hematology/oncology floor I was just discharged from. This was a difficult time for my family. Not only was I admitted in the hospital with no answers but I also have an older brother who was in high school at the time. My parents took turns staying in the hospital with me. They discharged me five days later without providing new answers. I followed up with the hematologist and had more blood drawn than you can imagine.

2 Years Later

The next few years were filled with countless consultations from different specialists ranging from orthopedic doctors to rheumatologists to multiple hematologists. Throughout my 4 years of high school, I was a cheerleader. I had to get blood drawn every other week to make sure my blood counts were in a safe enough range to participate in the stunts and tumbling. It was difficult as a teenager when I would have to sit out of cheerleading as if I had an injury but without the appearance of an injury. It was challenging to have to explain to teammates why I had to sit out of games and practices. As my friends learned more about my illness it got easier as my friends and teammates started to have a better understanding of what I was going through.

I had diagnostic tests including a bone marrow biopsy and a lymph node biopsy. Throughout the years of experiencing symptoms before receiving a diagnosis I had trips to emergency departments to manage my symptoms. I also had times where I had to go on steroids to treat symptoms. There were good days and bad days. I received accommodations from my school district. I was able to rotate which classes I would attend without being punished for missing school. The joint pain and fatigue made it difficult to make it through the school day. I still managed to graduate high school with a 4.0 GPA and 32 college credit hours. 

4 Years Later

Two weeks before I turned 18, I went to a rheumatologist who diagnosed me with Systemic lupus erythematosus. After this diagnosis, I felt relieved, validated and fearful at the same time. There was a feeling of relief that I could finally receive treatment specific to Lupus instead of just managing symptoms. I felt validated as I finally felt like someone believed the symptoms I was experiencing were real. There was fear for the way my life would look with the confirmation of having a chronic illness.

I learned the most important lesson through my Lupus journey: to continue advocating for yourself particularly when feeling unheard. I was lucky to have my parents advocate for me and take me to doctors to help me find answers.