Let’s Outdo Big Eyes with Big Mouths: Why I Won’t Stop Talking About IBD

Life is really complicated. And the older I get, the more complicated it becomes. I guess the universe evens things out by allowing me to give a few less f*$*s. Because if I was traversing the same route I was in my teenage years and early twenties, my brain would have blown a gasket by now. Funny how that works. But that resiliency has become an indispensable key to fighting this disease.

I was diagnosed with a chronic illness at the age of 17- for those readers that have been with me for a while now, it’s a fact they might find quite tedious. I, myself, tire of talking about it and, for the first decade of my illness I kept my diagnosis in a very closed-up, tight-knit and impenetrable box that sparsely contained just a sprinkling of close family and friends. For those of you that know me personally you know that, to this day, I rarely speak of my illness in person, even when prompted. I live it every day, talking about it just perpetuates its pervasive presence in my life. But my illness is so much bigger than me.

My illness lives with my daughter. It sleeps in the same bed as my husband. It casts a perpetual cloud over my parents. It affects my brother, my friends. But that’s just looking at my illness through my own, personal, looking glass. On a macroscopic scale, my illness affects millions of people. It eats away at their families. And when you multiply my story more than five million times, it should be speaking very loudly. But it’s not. And its reticence is not just affecting where we are today- it is dictating the future and the health of posterity.

The most powerful tool we have is the knowledge that the writing is not on the wall. The responsibility of creating a healthy future lies in the hands of those who are affected today. The future is our story to write. And I want my daughter to be writing a very different story, if only in very small part, because of the story that I tell today.

I am one of three family members that lives with this diagnosis. The thought of my children living with it has led me to great extremes to prevent that possibility, but the truth is that I can’t control whether my daughter will be diagnosed with my disease. I can only control what I do about it. And if I can inspire just one more person to speak up, perhaps they can match the $100,000+ that my family has raised toward research and patient programming. Perhaps they can let just one other patient know they are not alone. Perhaps they can save just one life, or inspire just one more person. Words are powerful, and we all have the capacity to share them.

IBD awareness week starts tomorrow. As tradition, I will be sharing a few themed blogs throughout the week. They will be aimed at spreading awareness. They will attempt to pay thanks to just a few of the countless avenues where thankfulness is long overdue. But a major theme of this year’s blogs will be about camaraderie. Living with IBD can be exceptionally isolating. And as much as we share… as much as we try to offer others a mere peep through our lens, it is simply not possible to understand what it is like to live with a debilitating chronic illness without carrying one around within you.

And, so, I hope to honor my fellow patients this week by offering a theme of solidarity. If my seemingly endless writing does nothing else, I hope it can relate a simple, yet stark plea to my IBD comrades: I hear you, I see you, I feel you. When it feels like your battle is like no one else’s, remember that it isn’t. But remember, too, that you are not alone. And that the most jagged pieces to your puzzle may be difficult, if not impossible, for “outsiders” to make sense of. But if you let them, those same pieces will become the most unique and exquisite parts of your story. If we can put just a few of our pieces together, I just know the picture will be worth a million words. And it will be a picture worth reading; a story worth telling.

Don’t let anyone convince you otherwise.

 

*** If you would like to donate to the Crohn’s and Colitis Foundation of America’s mission of discovering better treatment options and, ideally a cure, please consider donating to my cousin’s most recent mission here or attending the next event by purchasing tickets here. Thank you!

 

 

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