Content warning: this article mentions illness, hospitalization, medical gaslighting, graphic descriptions, bullying, body image and self-image issues.
I was a very energetic and successful child growing up. From bouncing back and forth between gymnastics and dance to getting straight A’s and perfect attendance. I was happy and content with my life…
Oct. 31, 2015, is when all of that started to change, but it’s not where my story begins…
It all started towards the end of the school year in fourth grade. My elementary school at the time had decided to follow in the footsteps of the high school and allowed us to have spirit days. From crazy hair to pajama day, I was excited about it all, but I knew that my most favorite day was going to be “dress up like a character” day. Everything was perfect– I had spent the whole night before looking for black cat ears I owned and drawing a small picture of Tweety so I could be Sylvester the Cat from Looney Tunes. Throughout the day, everything was going well, until it was closer to the end of the school day. We had reached the science unit of the day where we were learning about anatomy and bone structures. Our teacher guided us through different movements to see how our bodies moved and what bones were connected when doing certain actions. Then all of a sudden, my vision became spotted, my ears started to ring, and I became overheated. This was something I had never felt before and I knew something was wrong… In that moment, I wanted to walk to the water fountain that was in our classroom, or even sit down, but I feared that I would disturb the class or get in trouble, so I said nothing. A few moments later, I woke up to all my classmates and teacher hovering over me. It was a rather confusing thing, but it only took me a few seconds to remember what had happened. Luckily, my mom was subbing in the school, and they called her to the classroom, and I went home early that day.
As the months went on, my body slowly became weaker. I would start sleeping more often, get dizzy, and couldn’t keep up with my cousin when my family went on vacation that summer. My mom, knowing my background and personality, scheduled an appointment with a doctor who then claimed it to be growing pains.
Oct. 31, 2015, yet another day that was to be filled with fun enjoyment and dressing up, turning into something terrible. It was a Saturday morning, and I woke up excited to go trick or treating that evening. But something was off– a “rash” covering my body head to toe. I immediately showed my mom, and we thought it was perhaps an allergic reaction to my costume, as I wore it the night before, or maybe it was hives. When it came around to time for trick or treating, I wore long sleeves underneath my costume for three reasons that night: One, it was super chilly, and my mom wanted me to. Two, I would not give up wearing my costume even if it was an allergic reaction, wearing long sleeves to avoid contact with the fabric. And three, I was insecure about how the “rash” made me look. A few days later, my mom scheduled an appointment with my pediatrician who then diagnosed me with a disease called Hand, Foot, and Mouth disease. Which I now know was wrongfully diagnosed. I was also later diagnosed with Hemolytic Anemia, which is when your body produces antibodies with the immune system, and they destroy red blood cells. So, basically, my body was attacking itself. Great…
Eventually, December came along, and I was excited to celebrate the holidays– or was I? The rash came back, but something was different– some qualities of it were the same… Raised, hot to the touch and painful; but now after a few days or even hours, they would flatten and bruise. My mom was more concerned than she had ever been and contacted my doctor who cancelled the appointment and claimed that we were wasting his time out of frustration of the unknown. So then, I saw my rheumatologist, who prescribed my Prednisone, also known as steroids. Everything was going smoothly. The rashes were going away, no longer bruising, and I was gaining more energy. After 24 hours of tapering off steroids and finishing my dose, everything reappeared once more, ten times worse than what it had been. Once again, my mom and I had to wait several days to be seen by doctors. I had appointments to see my rheumatologist and even get a skin biopsy. The night before my appointments, I slept in my mom’s bedroom. If waking up next to her with bruises on my face wasn’t enough, my swollen purple tongue, blood red underneath certainly was. Missing my biopsy wouldn’t have been a good option, so we went to my appointment and once it was done, my mom instantly rushed me to the hospital. I couldn’t eat, I was put on a liquid diet when hospitalized. I couldn’t talk, I would have to communicate using paper and pen or by texting. After two months of being in the hospital, being treated like an animal in a cage, I watched medical students’ lives flash before their eyes when they walked into my room to observe. The hospital thought they could no longer investigate me and transferred me to a hospital in Seattle.
Being transferred by ambulance to Seattle in a four-hour drive in the winter wouldn’t be considered a fun journey. But I strongly believe that my experience being hospitalized in Seattle as a whole wasn’t fun either. Back home, I at least knew that a good majority of my team cared about me and who I was as a person. I became close with my doctors who understood, made crafts with my child life specialist, and explored the hospital in a red wagon that my nurses would pull me in. Not in Seattle– My other biopsy that I had gotten a few weeks earlier was still in the healing process. However, my nurses did not go out of their way to properly take care of it and took the stitches out too early. (I have had at least three biopsies done and the skin on this sight looks different than the others. I am still insecure about this sometimes to this day.) Finally, a month was over, and I was stable enough to go home after tests and tests.
Throughout all these events, one can imagine how much school I had missed. Most of my classmates were incredibly kind and supportive and would make me cards that my teacher would deliver when she would visit the hospital to lecture me on what we learned that week. Returning back to school was one of the hardest things. Oftentimes, some classmates would tell me how my presence back in the classroom would throw off the vibe and they made fun of me by the I looked.
Unkind words that were directed towards me went on for about three years, whether it was said to my face or behind my back. People made fun of the way my face looked due to how many prescriptions I was taking, and how puffy my cheeks were like a chipmunk… How dead and unhealthy my hair was (thanks, meds.) Several thought or joked I was with child when I went from wearing extra small to small size clothes to 2xl. It wasn’t just words that would hurt me, but also actions. Knowing that I had a weakened immune system, people who I often considered friends would go to school sick and cough on me while taunting me. “What? Are you gonna get sick or something? I doubt it.” I would be in the hospital days later, struggling to keep my vitals stable.
It was hard for me to connect with people and make new friends my age. And even if I had made friends, I felt as if they pitied me and were uncomfortable, embarrassed even to be my friend. Like I was some charity case… I hated the way people would tell me, “You’re so strong.” “Things happen for a reason.” If I was so strong, why could I no longer do the things that made me happy? If everything happens for a reason, why did it be me that it had to happen to? My world shifted in an instant and it felt like the rug was being yanked underneath me. I didn’t know who I was or what my future was going to be, and I hated myself and what had become of me. Being known as “the sick girl” was rough– I was embarrassed when I would see advertisements of a fundraiser for me plastered around the town, and I never knew what to say when I would get my own stories on news stations or in papers. Sometimes, all I wanted and all I could think about was the person I used to be… I once was a happy and fun person to be around. I was unnoticed and eyes were never on me, but that changed so quickly. All the frustrations and confusion I experienced made me irritable and I lost my “nice girl” reputation by taking my anger out on those who did not deserve it despite how I was feeling.
I felt as if I was going crazy and no one could understand… That’s why I was angry. Appointment after appointment of doctors telling me to exercise more or that it was all in my head. I was often compared to “the sicker” and sometimes thought that I was never valid enough or that some doctors didn’t care about how I was feeling. Even if they did care, I was not a Caitlin, but the “mystery girl” in the doctor’s offices and hospitals. It was a dehumanizing and humiliating experience for me and haunted me for months. “I’ve been their patient for so long and seen them so many times, but they don’t even know my name?” Eventually, I built up the courage and demanded to be called by my first name– because my “mystery” wasn’t who I was, it was just something that I was unfortunately going through, which is how my mom would back up the awkward conversation.
To this day, it is still unknown what caused my body to go haywire in the first place. As of right now, I am in remission. Thanks to a few rounds of Chemotherapy and Rituxan, I haven’t had a rash flare-up in years. But the thing I struggle with the most now is fainting (I’ve been diagnosed with Postural Orthostatic Tachycardia Syndrome “Pots”) and Hemolytic Anemia, which I get IV iron for when needed, easy bruising, and chronic fatigue. I still go to appointments to this day, but not as much anymore.
There are lots of wonderful things I have been privileged to have because of my medical issues, like receiving a Make-A-Wish, having my own fundraiser for me to go to the undiagnosed clinic at Standford University, and creating memories with my medical team that made me feel safe and important. This whole journey is the reason I am so close with my mom. (When she’s driving you to appointments, holding your hand when you get blood drawn, or you’re crying on her shoulder for eight years– well, it kind of happens.) There are lots of things that I used to wonder how my life would be any different without my medical issues that started when I was only ten years old. What if I told my teacher that I was feeling unwell? Did my Halloween costume really affect me and the rash that no doctor could officially diagnose? I don’t know. But I do know this: In spite of everything that I have been through, my illnesses do not define me or who I can be… and that is something that I am glad I have finally come to terms with after all these years.