“You can’t tell anyone.”
I wish I had a dollar for how many times I told my family that after I was first diagnosed. All I knew about ulcerative colitis before my diagnosis was that it was a “poop disease.” I had no idea what it really was, and I definitely didn’t want people thinking I had a poop disease. I asked my family to lie for me, I asked them to hide my disease, and I asked them to bottle up their own feelings about my diagnosis.
When I was first diagnosed, I didn’t tell a soul—not even my own family. I was so mortified and the last thing I wanted was people thinking about me with pity, or even worse, thinking about my diseased butt. I mean, can you imagine? I couldn’t. So I didn’t tell anyone until I landed myself in the hospital and it was there from my sterile hospital bed that I told my parents about my new diagnosis. Needless to say they were sad and angry about my diagnosis, but more importantly, sad and angry with me for keeping it from them.
I would love to think that my experience was completely my own and that no one else felt the same shame and embarrassment that I did upon diagnosis, but I know that is far from the truth. The stigma and misconceptions that accompany IBD and ostomies is overwhelming to say the least. In the beginning, I was humiliated and embarrassed just at the thought of people talking about me pooping, but most of that stemmed from a lack of education on my part. I only knew one person at that point who had colitis and I was ignorant about what having IBD really meant. I didn’t understand that this was a real health concern, not just a butt disease.
Unfortunately in today’s society, there are many things that we just don’t talk about. Poop is one of those things. In fact, it’s often joked that “girls don’t poop.” So when you’re a girl like me who not only poops, but poops 20+ times a day, there is a lot of shame that goes along with it. Then you add pooping your pants as an adult to the mix and I felt subhuman. I felt alone because I had no one I could talk to. So like many others, I turned to the Internet. I found people I could connect with, but I also found horror stories of medications and surgeries.
Confronting the Truth
I wasn’t ready for any of that yet. I was still trying to figure out how I could lie about my hospital stays to close friends and family. I didn’t want visitors when I stayed in the hospital because all I could think about was other people thinking about me pooping. I don’t know why I was so focused on that but I was. And this is how it continued for months until I had my first surgery. I had a complication to Asacol, which resulted in a pericarditis, which is excess fluid around the heart. I had to have surgery to drain that fluid so I didn’t go into heart failure. It was then, after that surgery, that I realized this was much more that a pooping disease. This was something very serious that I was battling.
I later went on to have five more surgeries and realized that I could no longer hide my diagnosis and force my family to hide their feelings. By making them lie for me, I wasn’t giving them their right to grieve or seek support. Once I knew I was going to lose my colon, I knew that this was bigger than shame about poop. This was a battle for my life and it was serious. I often say that if I had a disease of the arm that it wouldn’t have been a big deal to tell people. But because my disease just so happened to be located in my digestive tract, I was overwhelmed with shame and embarrassment.
New Outlook and Acceptance
The reality is that no one put that shame on me; I put it on myself. Once I opened up about my disease to the world, I found immense support and encouragement from the same friends and family that I had alienated. I realized that I didn’t even give them a chance to support me by shutting them out. This is not a disease that you can handle on your own for many reasons, and that is what I was trying to do.
Since my epiphany about the seriousness of this disease and my choice to open up, my life has changed so much. Once I stopped being embarrassed, I realized I could turn the shame around and be empowered by helping other people and connecting with them. I look back at that first hospital bed and I want to kick myself for being so naïve and unwilling to give others a chance to support me. By opening up about my life and my story, I have been able to work on fighting against the stigma of living with IBD and showing the world that those who live with IBD and ostomies are just regular people that happen to have a disease.
Now that same fear that I once had about people thinking about my butt has almost come to define who I am as an advocate. I now love to talk about my butt disease and the way that it has changed my life in the most wonderful way.
Published On: May 14, 2014