Originally Published in The Mighty on October 2nd, 2019: https://themighty.com/2019/10/suffering-the-silence-chronic-illness-photo-series/
“I was diagnosed 13.5 years ago but I feel like for a long time I kept it quiet. It’s so deeply stigmatized in American culture. Crohn’s being a bowel disease makes it very difficult to talk about. It has to do with something that nobody talks about. It’s so debilitating. A lot of times it’s mistaken for an eating disorder because our weight can be all over the place so nobody wants to ask us what’s going on because they’re ashamed to. We want to be asked how we’re feeling.
Since I became an advocate, more and more people are asking. People are understanding the different nuances, the different surgeries, because I talk about it all the time. I never realized how many people have this condition until I started talking about it. I have a lot of people all over Asia reaching out because I look like them. Just having someone who dresses like you, presents like you — makes a difference. They look to me for the Indian aspects, the Pakistani aspects, the Middle Eastern aspects of this disease. There’s a lot of cultural issues that go into it — how do we talk about this disease and all of its nuances if even our friends don’t get it and we are afraid of being made fun of for our bathroom issues? You’re not supposed to have kids because you have disabilities. People just assume that just because you have a disabled identity, there’s no sexuality. There’s no marriage ability to a person, you don’t lead a normal life. You do, you do. People ask, ‘How can you still get married?’ Be honest from the beginning, talk about it. If they don’t accept you, they’re not the right person for you. It is possible and it does empower people to see that.
I also have an ostomy bag and that adds a whole other layer of silence to all of it. Having a fistula, I’ve had several of them. I put out articles on that — my experience, the psychosocial aspect, the impacts on our marriage. These are really taboo subjects but people have to talk about it. We suffer in silence but I think you’re allowed to have an identity of suffering and of disability and be allowed to commiserate with other people and support other people and empower them at the same time. I think there’s beauty in imperfection and I think that needs to be highlighted.”
