Just as soon as he landed from India, a good friend called me, half laughing:
“Tina, I know exactly what it feels like to be you now! I’ve had diarrhea for the last three weeks after eating at Elco Market in Mumbai! What do I do?”
Another time when I was deathly ill, languishing from anemia, malnutrition and weight loss due to 20-30 bloody bowel movements a day, I remember the aunties ridiculing me. They would cackle behind my back as they proclaimed that I did this to myself.
“She must have eaten lots of junk food and drank too much in college so this is what she deserves.”
These experiences, among a plethora of others, are indicative of how ill-informed the desi population in America can be when it comes to one of the many chronic illnesses I have, inflammatory bowel disease (IBD). Given that IBD is on the rise around the world, including amongst Indian-Americans, it is important we educate ourselves.
So what is IBD? IBD is an umbrella term for Crohn’s disease and ulcerative colitis, which are lifelong autoimmune illnesses that attack the digestive tract and cause inflammation, bleeding, and ulcerations in the intestines. There is no known cure but there are now several treatments targeting various inflammatory pathways. There is no one reason as to why certain folks develop IBD, but research cites a variety of reasons, including genetics, environment, stress levels, among others. That said, diarrhea and/or a stomach bug are not IBD. They may be a part of our experience but they certainly do not cover the gamut.
IBD isn’t just a bathroom disease; it is much, much more than that. Yes, it is having 20-30 bloody bowel movements a day during flare-ups. But it is also having the wind knocked out of you so much so that it is impossible to leave your home to take even a short walk. It means anxiously hoping you make it to the loo without having an accident. It means feeding tubes that penetrate your organs to maintain your nutrition levels as your body weight sheds at astronomical speeds. It means necrotic nodules on your legs, inflammatory arthritis so intense that you can feel pain in joints you never knew existed. It means having ostomy surgery and adjusting to a new way of defecating again. It means fistulae burrowing holes from one organ to another, causing a life-threatening complication called sepsis. It means recovery from surgeries so backbreaking that you don’t know how to reassimilate into society again.
In a nutshell, having IBD has been a crippling experience, one that stripped me of my life as a young desi woman who, at one point, has had a promising biodata stamped and approved by her parents. So please tell me, where in all of this does a stomach bug or a bout of diarrhea appear to have much significance? And do I really deserve to have IBD, whether or not I ate poorly in college or drank a couple of mai tais?
The more important issue here is how can desis come to grips with what IBD is if our culture implicitly labels IBD, ostomy surgery and fistulae right up there with rape, mental illness, and disability as some of the greatest social taboos?
Frankly, no one wants to have IBD. We are so miserable dealing with a stomach bug for two days – forget about a lifelong bowel condition that prevents us from eating the spicy, chatpata Indian food we so love. The fact remains that this condition isn’t our fault. We didn’t choose to live a life fraught with bathroom trips, doctors’ visits, and dietary restrictions.
“You are not supposed to discuss that,” they whisper. “Log kya kahenge?” they implore. “This is your fault,” they chide.
Have these “log” ever done anything to help instead of ridiculing us behind our backs? It isn’t like they pay our medical bills or visit us in the hospital flare after flare, surgery after surgery. Nor do they come to our families’ aid when we are discharged. So why do these “log” have such a stronghold over our psyche? What do we owe them when all they can offer is gossip and judgment over a situation they refuse to understand?
Perhaps most importantly, why aren’t we supposed to discuss health issues? From shifty eyes to disapproving glances, why do desis act like I’ve committed a sin when I so much as mention my health? Unless we talk about illness, how can we create an awareness, acceptance, and sensitivity among our desi brethren so that these “log” matter less and we matter more?
This, among other reasons, is why I have started my own blog, “Own Your Crohn’s.” I hope to normalize the chronic illness experience because we are more than just our biodatas. We are human beings with real dreams and aspirations and we deserve to be heard, not shut down.
Now when my peers turn to me for medical advice, I educate them by saying, “I’m sure what you’re going through is awful and while I’m happy to help, please do not compare it to my bowel disease and my suffering.” It does the trick every single time.
Chronic illness is not a stigma; it is a way of life that deserves acceptance, not ridicule. So, own your Crohn’s, own your ostomy, own everything about yourself that doesn’t fit societal norms. Give it a voice.