Girl’s Got Guts

Tina Aswani Omprakash exudes gratitude. After 20 surgeries, hundreds of medical procedures and imaging studies, the 35-year-old New York City-based Crohn’s and IBD advocate uses the Urdu word shukr (thanks) to describe the profoundness of her state of gratitude. 

“I am so grateful on so many levels that I have survived,” she told me in our FaceTime interview for Folks. “Surviving does not mean success; death does not mean failure to me. But what it does mean to me is that modern medicine, modern surgery, has made it possible for me to survive.”

Omprakash was all too familiar with Crohn’s and IBD by the time she was diagnosed at age 22. “I would have gone down the same road as my father, my aunt, and my great aunt had modern medicine and surgery not existed,” she said. “I am so grateful to my ostomy for giving me life again. It really did save my life and make me feel whole again.”

After her illness forced her to leave her career in investment banking, Omprakash dedicated herself to advocating on behalf of people with Crohn’s and IBD. She blogs and offers resources on her website ownyourcrohns.com. I spoke to her to learn more about her journey.

First of all, what made you decide to get into blogging about your Crohn’s disease?

It’s actually something that has been on my mind since 2014. I didn’t actually start blogging until March 2018, and I’ll tell you why. I had had a number of surgeries already, probably about 20. I would see a lot of patients and doctors on Twitter, and wished I had the guts to speak up and share my experience because it could be so valuable. I talked to my husband about it. He was like, I’m not ready for something like that and what is family is going to think of this, or what is our culture going to think of this? It’s so taboo. We can consider it down the line.

What really did it is in 2016, when I started doing a lot of volunteer work. Those were monthly support groups that the Crohn’s & Colitis Foundation held but many of us women from the Women’s Support Group did get together a lot on the side. We found solace in being able talk through a lot of topics that were very intimate. At some point, when I became co-facilitator of the Women’s Support Group, many started asking for my story. Sharing was so nerve-wracking because it was very personal and intimate. I was trying to dodge the whole blog route, but eventually it was just one of those things that I knew was my calling. 

You were describing how personal and intimate it is to share these kind of private things about your health and your body. Where is the boundary for us when we’re sharing our story, being honest and frank in a way that is helpful for other people while still protecting our privacy?

I’ll be honest with you. I really struggled with that question. What I’ve done is I’ve guarded certain areas of my life. So even though my most personal medical stuff is out there to some degree, I feel comfortable that my everyday life isn’t out there—whether it’s meeting up with friends of mine or non-IBD-related things I’m doing, unless they have some kind of message that I think needs to be stated on my blog or on my social media. That’s one of the things I’ve guarded a lot. 

Another thing I’ve guarded a lot until only recently is my marriage. The only reason I’ve exposed it a little bit in the last couple of months is because I’ve been hearing from a lot of patients who ask, how do you have a relationship? How do you make an inter-abled relationship? I did shed light on that. One of the things that I do is that even though I talk about the nitty-gritty, I’ll talk about it from one angle and won’t go into every little thing that happened so that I feel safer and less exposed.

How do you draw the line between “this is about something I have” and “this is not who I am”?

TAO: As a society we don’t really talk about poop or going to the bathroom. So to talk about inflammatory bowel disease, a lifelong condition that involves poop and serious intestinal issues? Are you kidding? What is wrong with you?! And if you add a fistula to the mix? Add an ostomy bag to the mix? It was hard to come out with my story because I have all of these and each layer of complexity causes that much more stigma in my culture.

It’s very easy to lose yourself in a “sick identity”… But it takes a certain amount of strength to say “no, I am a person in spite of my illness.”

As far as my identity goes, and trying to separate it from all of this, I think in the beginning it was really a struggle. It’s very easy to lose yourself in a “sick identity.” It’s very easy to feel sorry for yourself. It’s very easy to think, “Why me?” But it takes a certain amount of strength to say “no, I am a person in spite of my illness.” I have interests, and sitting down and really thinking about what those interests and passions are and pursuing them.

I sense a deeply spiritual dimension to your journey as well. There’s the gratitude that you describe in the Urdu word “shukr.” I wonder if you could speak to this deeper dimension of living with serious illness?

Overall, I think I’ve gained such perspective on life and from the spirituality I’ve gained from having illness. And there are so many people I’ve met—mature, kind empathic, passionate people—that I don’t think I would have met otherwise. I’m really grateful for doctors and their care; that gratitude is all encompassing, really.

Some of our deepest wounds, whether they’re physical or emotional, are where we have our greatest learnings or greatest wisdom. They really turn us into the diamonds that we’re supposed to be. 

Some of our deepest wounds… are where we have our greatest learnings or greatest wisdom. They really turn us into the diamonds we’re supposed to be.

One thing I’m interested in hearing your thoughts on is humor. I’ve been thinking about this because my 84-year-old mom was in the hospital recently with a septic UTI, and we had to wear gowns and gloves. I would joke about “Mom’s cooties” as a way of trying to lighten the mood. It’s about referring directly to what’s going on but in a way that makes it lighter, easier to bear.

However you can infuse humor into your relationships, and also in your relationship with your disease, is very important. My husband and I often joke about it. I know in the beginning he struggled with joking about it because he was afraid of offending me. I’m at a point where it doesn’t offend me as much. If I don’t know you, it’s different. But when I’m with friends with IBD, or close friends in general, and we’re joking about this stuff, I actually find it kind of a relief. I think humor provides relief, a catharsis of our emotions, because it’s really, really hard to cope with.

I’ll give you an example. A group of friends of mine and I were going to a retreat called “Girls with Guts.” There’s a non-profit called “Girls with Guts” for women who have inflammatory bowel disease, ostomies, J-pouches, whatever related to IBD. We were driving to Pennsylvania, to the Poconos, and we got stuck in traffic right outside of a town and a sign that said “Buttsville.” Of course we’re sitting there laughing, we’re posting it all over social media. Traffic’s already horrific enough to deal with, then you have a bathroom problem and you have to go to the bathroom, and there’s Buttsville right in front of you!

There’s the hilarity of chronic illness, but it’s also important to maintain sensitivity. It’s really important to use humor to help people cope.

The fact that we can sit there, laugh and be present in the moment together, helps us feel accepted and part of a community.  That’s what is important about humor: flipping the stigma on its head. There’s the hilarity of chronic illness, but it’s also important to maintain sensitivity. It’s really important to use humor to help people cope. Humor fosters positivity. If he can get through this and laugh about it, so can I. I think it’s a source of strength.