By Tina Aswani-Omprakash, MPH
Looking back 20 years ago… When I first graduated college and started working, I had no idea what my life was going to look like. I was full of excitement but I did have a fear in the back of my mind that I may already have inflammatory bowel disease (IBD) in my early 20s like my father did. I also was in a race against time telling myself to “live it up” and build a prosperous career because if Daddy only lived until 39, maybe that would be my fate too.
But on some level, I had no idea how bad this disease could get. That I could have so many surgeries and beg God to take me, yet still continue to suffer on this worldly plane in some kind of limbo…between life and death.
Yes, that’s what it felt like – from 24 when I had my first surgery to 32 when I had surgery #20, I felt like I was living life in limbo.
It was only 2+ years later that I started my blog, “Own Your Crohn’s,” because I felt life surge again within me. I felt like I could take the reins of my life back from this awful disease given how hard I advocated for myself to have surgery and finally go into a clinical trial.
And in my own self-empowerment, I wanted others to feel empowered to advocate for themselves too. I didn’t want others to be afraid of “Western medicine” if that’s what would give them life again. What I didn’t know in 2018 when I started my blog was that my disease journey and all of its cultural nuances would open the proverbial floodgates on cultural sensitivity in GI care. And what I didn’t know back then was that my blog would not only turn me into a patient leader but also into a nonprofit leader. I’ve had the pride and joy to co-found and now lead a beautiful organization, SAIA, which focuses on “intercultural advocacy” and promoting cultural competency in healthcare.
Yet, the haze of that limbo still surrounds me. I remember telling myself, “Tina, it’s going to be really hard to rebuild yourself and your career if and when you come out of this alive.” It has been really hard. I’m not gonna sit here and lie. I’ve never been served anything in my life on a silver platter. I’ve worked my butt off to learn everything I possibly can about IBD and advocate so hard for life so I can survive and thrive in spite of all the cards being stacked against me. Nevertheless, I stand here tall keeping my eyes on the prize: pursuing my meaning and purpose so that no one suffers in shame and in silence the way my Daddy and I suffered… to help countless people and their families globally and to lead an organization like SAIA to new heights.
I think it was Mahatma Gandhi who said, “be the change you wish to see in this world.” I never knew what opening the floodgates through my blog would mean, all I knew was that someone had to speak up about the deep cultural challenges and be the change we wished to see in this world.
So, as I celebrate 20 years of IBD, all I can keep doing is owning my Crohn’s. All I can do is keep advocating for all cultures and communities who struggle to have a voice especially with immensely stigmatized conditions like IBD and other chronic GI ailments. That’s all I know and that is what I have survived for…to see this to fruition.
As I look forward at the next 20 years, may our future be filled with deep remission and growing leadership and advocacy for all cultures and communities!
