Today marks my 13th anniversary with Crohn’s disease. Lights, Camera, Crohn’s: An Unobstructed View, is two years old today! It’s a big day. Lots of reflection and bittersweet emotions. It’s always difficult to know how to handle an anniversary of a chronic illness diagnosis—is it a celebration? Is it a remembrance of what was? Is it all the above? For me, I like to think about how far I’ve come since July 23, 2005. How my perception of life, people and my own personal strength has grown, changed and evolved, thanks to my disease.
Since I started sharing my story in 2014 as a patient advocate, I’ve really put myself out there. I’ve been vulnerable, honest and haven’t minced my words. I’ve been fortunate to have speaking opportunities, videos, conferences and feature stories. While that is all wonderful—it also puts you in a space and a place where complete strangers—who have no idea what you’ve endured, can pass judgement and make claims about how you choose to take on your illness.
This past week—I was surprised by a comment on Facebook, written on an article by Health Central that highlighted my patient story. Like many people on social media, rather than read the article—they reply to the title or the pulled quote in the caption. The featured image from the story is one of me smiling outside my home. The comment on the article: “Crohn’s sucks. Why don’t you show what a real sick person looks like, instead of a happy smiling one???? Just saying—nothing happy about this crap.”
This really took me aback. This felt like a slap in the face. This comment hurt me. Obviously, she didn’t read the article or she would have known about all my hospitalizations, surgery, and rollercoaster of a journey. But to flat-out judge a fellow patient who lives with this debilitating disease and demean me for having a positive attitude…and smiling (God forbid!). If it weren’t for my attitude and the way I approach my Crohn’s disease, I never would have accomplished my dreams of being a television news anchor. I never would have trusted a man with my heart and gotten married. I never would have become a mother and gotten pregnant again.
If there’s anything I’ve wanted you to take away from my blog and my journey, it’s about finding the power of positivity in your experiences and seeking the good that still exists in your life, despite your disease. If you want to think woe is me and suffer all day long on the couch…that will be your life. If you choose to smile and show Crohn’s who’s boss, than no matter what obstacles and setbacks come your way you’ll tackle them and fight through flares with a knowingness that better days are ahead.
As a patient advocate—I know I can’t please everyone. I know not everything I say will resonate with you. And that’s completely fine. All I ask is that you have an open mind and understand that each person chooses to take on this terrible disease how they want to and shouldn’t be called out for it. My life is not all about hospitals, IVs, pain and suffering. Yes, this past week my injection hurt so badly I was sobbing hysterically and yes my stomach was killing me while out to dinner. But you know what, those moments passed. Rather than allow my pain to rob me of a wonderful conversation with a friend—I stayed at the restaurant. Instead of wallowing in the pain of my injection and the bruise that remains days later, I had a bowl of ice cream and gave my 16-month-old a few extra high fives.
So, to whoever decided to try and belittle me on the article about my patient journey and look down on me for smiling, please know I am a real person…and I am sick. But sick doesn’t come first when I think of who I am. It’s a part of me. It’s not all of me. That’s how it will always be, no matter what. And one thing I can promise you—now and in the future, it will never stop me from smiling.