Living with IBD as a South Asian woman
Published: April 24, 2020
IBD can affect anyone, regardless of their gender identity, age, or racial/ethnic background. And yet, when I was growing up, I didn’t feel as though that was true. In fact, in my experience, the people in the IBD community around me hardly ever looked like me. I remember meeting another South Asian person living with IBD for the very first time when I joined the National Council of College Leaders. I realized that before her, I had never met another patient of the same cultural background in my eight years of living with the disease.
My identity as a South Asian second-generation immigrant isn’t the only thing that plays into my daily life with IBD. However, while I do very much relate to other people living with IBD, regardless of their heritage, there are some aspects of my journey that are unique to my culture and lived experience as a person of color.
I was diagnosed with ulcerative colitis at age 10, in the midst of fifth grade. Following my diagnosis came a spiral of silence that sucked in not only myself but also my immediate family. It took us four years before we finally worked up the courage to tell some of our closest friends and extended family, when we shared my story online for my first IBD-related event, the Foundation’s Silicon Valley Take Steps walk in 2014. I remember the moment I clicked “publish” on my Facebook post sharing our fundraising page. It was terrifying; I was finally coming out of the metaphorical IBD closet, yet the only thing I could think was, “log kya khahenge?” (a Hindi saying that translates to “what will people say?”). In my culture, it’s inappropriate to talk about anything related to bathroom habits, especially with those outside your immediate family. This, in addition to IBD being stereotyped as just a bathroom disease, made it difficult for me to talk about the symptoms I was having.
Navigating others’ perceptions was a challenge I’ve continued to face. In my culture, food is a way of expressing love for one another. Thankfully, a lot of the cultural food that we eat in our house has been modified to fit my dietary needs. However, when we go to a family friend’s house, the food can be far too oily, greasy, or spicy for my gut to deal with. Something that tastes good might not necessarily be good for my colon or my disease. Advocating for myself and explaining to people, “I’m sorry, but I can’t eat that,” was difficult because I didn’t want to be offensive or hurtful by refusing to eat the food that they clearly made with such love and care. It was like walking a tightrope, trying to love my culture and family while also ensuring to extend that love to myself and my body.
This is why representation matters - it’s more than just a catchphrase, it’s a statement that recognizes how each person’s identities uniquely intersect to create different lived experiences. My IBD journey as a young South Asian woman is vastly different from that of an older man who is not of color, and each of us are an expert in those lived experiences. Diversity is more than just a checklist, and in lifting up the voices of underrepresented groups, we can build a more equitable and accessible world for IBD patients of all cultural backgrounds.
Amy Bugwadia is an ulcerative colitis patient from California. She is the co-chair of the Foundation's National Council of College Leaders.