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When a Doctor Assumed I Didn't Have IBD Because I'm Asian American

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Susan Sontag once wrote, “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.” To be chronically ill is a (quite literally) never-ending battle, one that always seems to pull me back into darkness just when I feel as though I’ve made it out. I often feel that my body is an accomplice to its own pain. However, I have found immense strength in reflecting on my story, on the very roots that inform who I am.

In June 2020, in the midst of the worldwide COVID-19 pandemic, I was diagnosed with Crohn’s disease, a form of inflammatory bowel disease. Countless months of hospitalizations, surgeries, and treatments, learning about my new autoimmune condition shifted the very foundations of my life as I knew it. It was only after grueling weeks of trial-and-error diagnoses by doctors that I finally learned about this chronic illness, an invisible disease. Truth be told, the news was a shock to my family, but not for the reasons you may think.

In my mother tongue, there is no widely accepted translation for “Crohn’s disease.” As it turns out, my Asian American identity is one reason why it took so long for me to receive my diagnosis — my gastroenterologist hadn’t previously thought to test for a condition that was thought to be more common in Caucasians. And thus, my innate passion for exploring the intersection between disability and Asian American identity was born.

As a Korean American woman with inflammatory bowel disease, I experience disability through the lens of multiple marginalized identities. Personally speaking, I came face-to-face with the inevitable intersectionality of advocacy while fighting against anti-Asian hate. In the wake of 2020, the United States began to witness an alarming surge in anti-Asian racism that quickly escalated to nationwide violence and hate crimes. As a chronically ill patient, I knew exactly how it felt for an entire community to be marginalized, vulnerable, and at-risk, making it all the more urgent for me and my fellow student leaders to speak up against these acts of hate.

From its inception, AADI has been entirely youth-driven, rooted in the spirit of intersectionality. Founded in July 2021, this organization has been the ultimate culmination of my dual identities, clashing and overlapping with one another in discordant harmony. Truth be told, it’s taken me a long time to embrace these two identities, both steeped in winding histories of societal racism and ableism. In fact, it was only while founding AADI that I truly began to take up space as a disabled Asian American woman.

As I write this, I’ll be frank when I tell you that I still grapple with my own disability every day. As a chronically ill patient, I have yet to reach full remission, meaning that my body still undergoes painful flares and complications every day. Nevertheless, working with this all-star team has been such a blessing, a hidden lesson in strength and conviction. Leading the Asian Americans With Disabilities Initiative (AADI) has taught me that my story as a disabled Asian American resonates with others. But more importantly, I hope that AADI will prove you’re not alone in your journey.

Thank you for being here, but more importantly, thank you for being a part of this community with me. Through AADI, I intend to champion intersectionality in any and all avenues of advocacy, proving that it is indeed possible to care about both disability and Asian American issues. As the saying goes, nothing about us without us.

Getty image by Prostock Studio.

Originally published: November 2, 2021
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