Anonymously Brave: Poo is Taboo
This week my story was featured on the Today Show’s website and Facebook page. The week before last, Susan James called me for an interview. At the time, I didn’t think much of it… I’ve been interviewed before, but most of those interviews were for smaller, lesser-known websites. Never anything so well-known as the Today Show.
When everything was posted on Monday evening, I was excited! Cool! Awareness at its finest! I was pleased with the way Susan portrayed the disease (for the most part) and thrilled that ulcerative colitis was getting a big spotlight on a national level. My friend pointed out the fact that my story joined the ranks of those on the Today Show’s Facebook page. Naturally, I shared it, too…
Brave…? If you only knew…
Many people congratulated me on the awareness work. Others lauded my bravery. Some called me a “hero” or said I was “inspirational.” As the likes, reactions and shares continued, I began cringing with each one. For over two years now, I hid behind the ninja mask… making the occasional appearance in a selfie on Instagram or at a few IBD events. But now my story, the details of my disease and my face were all put in the spotlight. There is no turning back from this point.
Strangers and people I don’t know that well were commenting and liking the post. If they didn’t before, they now knew the horror and shame that comes with my disease. The very nature of the disease is not easy to discuss–even with doctors. And so, I keep cringing. Now they know a very personal side of me that I only share with my friends who also share my disease. Yes, it’s true, I blog about it every day… but most of those people never venture over to my blog. Most of them did not know the nitty, gritty details.
The truth is…
The raw truth is… I’m not a hero. I’m not brave. Am I helping others? Maybe. But I am still a coward. Embarrassed and ashamed of the way the disease ravages my body. Am I doing well now? I am… thankfully. But not everyone can say that. And despite the fact that I am doing well, I still struggle. Not having a colon is far from ideal… but I’m healthier now than when I had a diseased, evil colon. I love my J-Pouch. It gave me my life back.
My husband traveled for work this week and along the way, he met up with his family. Over dinner, they discussed the Today Show feature. As he told me about it, I found myself ashamed and embarrassed once again. Despite the fact that they all probably know most of what I went through by now… I still wanted to bury it and pretend it didn’t happen. Why? I guess the details are STILL taboo. And again, most days I hide behind my precious ninja. She is the face of my disease. I don’t want to be unmasked. I want her to speak for me… she’s the reason I fully opened up about my disease. She’s a beacon of hope not only for me, but to many others as well.
I will not be silenced!
All the feelings of shame have, again, made me realize the importance of speaking out. I have to keep talking about this. I have to continue my efforts to raise awareness… if I’m still scared of speaking out, then I know there are thousands (possibly tens of thousands) more who feel the same. The more I talk about it, the braver others will be. The more voices we have speaking out, the better our chances of one day having a cure. And so, I will press on… I will not allow my shame to silence me.
