coping with flare,  Crohn's,  living with IBD,  patient rights,  stigma,  Ulcerative Colitis

Coming Out of My IBD Closet as a Desi Woman

Every single year the Crohn’s and Colitis Foundation chooses a local Adult Honored Hero who shares his/her story and is honored at the Take Steps Walk in the spring. And every single year I attend the New York City walk, raise awareness and funds to help find treatments and someday a cure for these awful diseases. I bring my friends and my family together along with the Foundation’s Women’s Support Group so they can see that we patients don’t suffer alone, that many folks from all walks of life have been through hell and back at a young age. And every single year, one of my closest girlfriends has tears in her eyes as she asks me why it isn’t me up on the stage being honored. Last year after the walk she asked me to look into the nomination process and the qualifications involved. And as a result of that process, I was chosen to be this year’s Adult Honored Hero in NYC.

Since then, coming out of my Honored Hero story and the speech I gave at the walk has been nothing short of an emotional whirlwind. I have been lauded and I have been judged. I have been praised and I have been shamed. I have alienated some, yes, but I have inspired others. As dichotomous as the response has been, it is all par for the course, the gut-wrenching yet humanizing course of coming out of your own closet, whatever that may be. For me, that process was specifically coming out of my inflammatory bowel disease (IBD) closet publicly, both in print and all over social media. It was nerve-wracking, it was exposing vulnerability and I felt naked in the world’s eye, and in particular the eyes of Indian-Americans. “Log kya kahenge? (What will people say?)” raced through my mind like never before. And I wondered if I’d ever be accepted again in the Indian-American community.

What is IBD?

After my story came out, I received many calls and emails from family and friends saying, “We thought you just had a small stomach ailment. How come you never told us your condition was this serious?” While I appreciated the concern, I never talked about it because (1) I am a brown woman and we are not supposed to talk about our periods let alone our bowel movements or our ostomies; (2) most Desis don’t know what IBD is, meaning I would have to explain that it is a bowel illness, which was a terrifying proposition; (3) I feared judgment, malice, and rumors being spread about me due to lack of knowledge about what it means to have a bowel condition and an ostomy; and (4) I, like everyone else, have that one (or more) Desi aunt/uncle who wants to put his/her two cents in about why I have this condition and how I can “cure” my IBD naturally.

But now that my story is out, I think it is vital for the Desi community to understand what IBD is given how quickly the disease is growing. According to the Mayo Clinic, “inflammatory bowel disease (IBD) is an umbrella term used to describe disorders that involve chronic inflammation of your digestive tract”. There are generally two types of IBD, including ulcerative colitis and Crohn’s disease. Symptoms involve the following:

  • Unremitting diarrhea
  • Fever, fatigue and lightheadedness
  • Abdominal pain and cramping
  • Blood in stool
  • Changes in appetite
  • Unintended weight loss and anemia

After 8-10 years of having IBD, it can lead to colorectal cancer, which is what ultimately killed my father and aunt. So I urge everyone who is having bowel symptoms to please visit your doctor and have your blood work and stool studies done. While most of us know of and dread the infamous colonoscopy, it is often one of best ways to determine what’s going on in your intestines if your doctor recommends it. If you’re symptomatic, don’t wait. Help yourself by getting screened.

 

Shattering the Stigma

Now that we have a basic understanding of the condition, it’s important to talk about the stigmas surrounding it for brown women. For me, it was unhinging to receive an IBD diagnosis but to have to face Indian society as a young brown woman with this condition felt downright demonizing. I have often been viewed as “the other” because I haven’t been able to maintain a fulfilling career and I haven’t been able to complete my graduate education, all things I had and was working toward prior to relentless episodes of disease and surgery.

I was afraid of being judged and having fingers pointed at me while being told that I did this to myself. I was afraid of not being able to get married or stay married given that I needed surgery and now poop in a bag. I was afraid that I would pass this on to progeny if I could even reproduce. All in all, I was afraid that I was less than the perfect Indian girl with a far from perfect biodata.

But I am none of those things. I am proud of my illness and my ostomy and of having survived despite the odds being stacked against me. To me, survival is the greatest accomplishment of all, greater than any career or educational accomplishment that our Desi population might laud. And I wouldn’t be who I am today if it weren’t for my life-altering, near-death experiences. Just because I have a chronic illness doesn’t mean I’m less of a woman or less deserving of happiness.

So I broke my silence not for the attention, not for the love or for the hate, and certainly not for the pity or for the sympathy. I did it because I was tired of living in silence and in shame. I was tired of being “the other” and being treated as less than my Desi-American peers. I was tired of not being me just to conform to the pressures of our culture and society. And perhaps more importantly, it was about time a brown woman gave voice to two of the greatest taboos in our culture: bowel disease and ostomy surgery.

After all, why should I be ashamed of surviving? Why should I be ashamed of being a brown woman with bowel disease who shits in a bag? We all use the bathroom one way or another. So why the stigma? And above all, why does our culture not reward those with chronic illness and disability for our strength and resilience rather than shaming us for being less than perfect?

Own Your Chronic Illness, Own Your Disability

All of these questions have been percolating in my mind since my life-saving ostomy surgery a decade ago. But our culture is at direct odds with who I am and what I believe in. I believe in living the fullest life possible in spite of illness and disability. And to do that, we cannot be ashamed of who we are. Our diseases don’t define us but they are a part of us and they make us whole. So, to me, owning my Crohn’s and owning my ostomy is being comfortable enough to speak up about my condition. It means finding ways to give other brown folk suffering in shame and in silence a voice and an avenue to not feel isolated anymore.

To that end, I’ve started a blog called Own Your Crohn’s to do just that: to empower folks with chronic illness and disability. I broke my silence and will continue to in order to create awareness and greater acceptance for those of us suffering behind closed doors. My dream is to one day lead a congregation of Indian-Americans who are more accepting of their chronic illnesses and disabilities.

At the end of the day, we are a community, one who can and will accept “the other” if we try. And that change can begin with our generation. We are not just a society of “Log Kya Kahenge?” We are a community of loving and accepting people, but that change must begin from within each and every one of us.

So, own your Crohn’s, own your ostomy, own everything about yourself that doesn’t fit societal norms and give it a voice. Come out of your closet and be the change you wish to see in our community.

***Originally published in The Teal Mango on June 13th, 2018: http://www.thetealmango.com/lifestyle/coming-out-of-my-ibd-closet-as-a-desi-woman/

My name is Tina and I am from the NYC area. Due to the severity of my Crohn's, multiple surgeries and extraintestinal manifestations, I have served as a case study for a number of renowned doctors and surgeons across the country. I hope that my advocacy work and the medical research done on me help current and future populations of IBD patients. In a world where the #metoo movement has erupted, I believe it is high time for patients like myself to speak up about the ravaging aspects of chronic illness and disability. The intent of this blog is to give those suffering in silence and in shame a voice that creates greater awareness and acceptance of our daily struggles. I own my chronic illnesses and disabilities and my goal is for you to as well!