A few weekends ago I had the honor of attending the 5th annual HealtheVoices conference in Dallas, Texas. This sponsored event serves to bring together patient advocates with different conditions to grow our advocacy platforms.
As the days grew closer to my attending the conference, I became increasingly nervous albeit excited to be amongst so many famous patient advocates.
A Little Heart Can Do Big Things
I had no idea how “little” Tina’s inflammatory bowel disease (IBD) advocacy could even stack up next to all these amazing, game-changing advocates. Imposter syndrome—a psychological term that describes someone who doubts their accomplishments—was rearing its ugly head.
Interestingly enough, this year’s theme was a little heart can do big things. It took me a short while to realize that little Tina has already been doing big things in IBD advocacy. I may have begun my advocacy work in the last 13 months, but I am nevertheless passionate about taking my experiences as a patient and bringing them to life by sharing them with others. And not just for their education, but also to bring about real change in the ways that others experience disease and treatment. That’s what my little heart is trying to accomplish.
Breaking Free from an Invisible Illness
Woven into our experiences with illness are so many individualistic aspects that shape the way our journeys unfold. These can be anything from upbringing to culture and ethnicity to sexual orientation or age of disease onset among many others. For me, my upbringing, culture, and ethnicity played into the many aspects of my care. I wouldn’t do my journey justice if I didn’t bring my heart forward to share those facets of my experiences to effect change.
As a woman of South Asian heritage living with IBD and a myriad of other conditions, I felt ashamed not only to talk about my health but also to even appear remotely sick. For a solid 12 years, I embraced the invisibility of my illnesses. Why? Because I didn’t want to stand out like a sore thumb. I didn’t want to be known as the woman with poop problems who wears an ostomy bag and undergoes surgery after surgery. All because I felt like I had failed myself and couldn’t provide any useful value in society as a sick individual.
You see, Crohn’s disease not only ravaged my body with more than 20 surgeries and fistulae eating away at my intestines. In my early 20s, Crohn’s derailed my career on Wall Street, my sense of self and many of my friendships while threatening my family life, including my marriage. I couldn’t partake in the merriment of weddings or holidays by eating spicy, ethnic foods nor could I drink and forget my troubles at any of these events. I was often reminded that women in South Asia, and really, all over the world stayed single or ended up divorced if they couldn’t be good wives.
And the last thing I wanted to do was expose any more vulnerability to the world. Or so I thought. So I continued suffering in silence, in shame and in misery, dreaming about the day when women like me wouldn’t be told that their husbands deserved able-bodied partners who worked, cooked, cleaned, and reared children, rather than surviving for a living.
For the last 5 years, I’ve dreamed of changing this paradigm by giving a voice to the intersectionality of my illness experience. Yes, I’m chronically ill. Yes, I’m brown. And yes, I’m a woman. All of these experiences factor into my journey and have not been discussed openly with me when I was at my lowest points with disease and disability. And I don’t want that to be the case for others who barrel down a path similar to mine.
Striving to Give the Voiceless a Voice
My heart has been doing big things and is not an imposter. I want to continue to do big things by effecting change for all types of minorities (racial, ethnic, sexual and others) to speak our truths. In my heart, I do not want minorities to suffer in shame and silence anymore.
And more than anything else, I want justice for everyone living with chronic illnesses and disabilities; we too are human beings who are deserving of love. We may not be productive in the traditional sense but we can effect change little by little by sharing our stories of survival.
Come join this little heart by owning your Crohn’s, owning your chronic illnesses and disabilities, to create a world full of love and acceptance for each and every one of us.
Disclaimer: Janssen Global Services paid for my travel expenses for the HealtheVoices conference. Any content I create and opinions are my own and are not reflective of those held by Janssen.
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