Two continents, four countries, 3 US states, and 34 doctors. These numbers represent the lengths I went to, searching for someone willing to take me seriously as a chronically ill young woman. You see, in September of 2021, my freshman year, I became very sick very fast. Among other things, I was fatigued, nauseous, and of most concern, passing out up to 6 times daily. Years later, we discovered that I had undergone a rare tumor-associated stroke, and it was too late to treat due to misogynistic medical neglect.
After months of diagnostic testing, accumulated dead ends, time spent in Jakarta, Dubai, across the USA, and Singapore. My digestive system, menstrual cycle, hormones, and heart were not working correctly. I had to drop out of school, separate from my family, and essentially lose every part of myself.
All that being said, this essay is not about estrogen levels and low blood pressure – this is about how I navigated the healthcare space. The problem with my stroke is that it is so complex, so intersystematic, that there is no simple blood test to say yes, this is what's wrong with you. It's subjective. It requires lots of data and a committed doctor to figure it out.
I was instead met with overworked doctors whose concerns were often aloof from my case. With the lack of a clear-cut route to clarity and my being an "emotional teenage girl," doctors repeatedly questioned and dismissed my symptoms, saying I was anxious, dehydrated, or grappling with the raging hysteria of female adolescence. In other words, they brushed off my pain under the pretense of age and reproductive organs.
At this point, no one was taking me seriously. While I had the support of my family and friends, I needed answers and medication that worked. While I never doubted the realness of my symptoms – doctors' repeated apathetic responses brought me to a place lacking hope, fueled by my distrust of medical authority. I became more and more anxious in anticipation of appointments. Anxiety I couldn't risk showing, in the likely chance that doctors would use it as a scapegoat to pin my symptoms on, something that fit my emotional character.
But I'm done with that. After 18 months of this hellscape, I found a doctor who cared and rescued me. He diagnosed me with pituitary apoplexy, which has affected only 22 adolescents since 1980. While the lack of urgency in treatment has rendered my symptoms irreversible, I have made it my life's mission to take this away from my life's center.
During the school year of 2022-2023, while making time for the countless IV sessions, appointments, and trips to Singapore, I still managed to receive a 4.0, a five on all my AP exams that year, spearheaded committees on student government and was an active member in 9 clubs.
Every day I feel the effects of my illness. Every day I grapple with the notion that if someone had cared sooner, my life would be different and less painful. But instead of letting the pain, emotional and physical weigh me down, I use it as an excuse to push myself forward. It lights the flame in my literally broken heart and makes intelligence, not tumors, the focal point of my brain. Yes, I'm angry, and yes, I'm sick, but more than that, I'm motivated.