The Stigma of UC: Breaking the Silence
Last updated: May 2023
I have a secret... No one can outwardly see my struggle. From all appearances, I look normal. More importantly, I look healthy. But I know differently. I'm not like everyone else. For years, I kept my problem hush-hush. I never spoke a word about my internal pain. Who would understand anyway? I felt too embarrassed to speak up. I was even too ashamed to talk to a doctor about it.
It seemed that every time I ate, food hit my gut with the force of a sledgehammer. Intestinal pain forced me to bend forward at the waist or curl up like a ball. If I got the slightest bit agitated or anxious, I felt the urge to get to a bathroom. Take too long, and I paid for the delay with messy results.
How could I explain constant diarrhea? Why was I bleeding where I wasn't supposed to? What was the mucus exiting my body? Did other people have this problem? It all felt too shameful to be talking about.
Suffering alone with ulcerative colitis
In my youth, I struggled quietly for years. Even after the diagnosis of ulcerative colitis at age 19, I still kept quiet. Back in 1989, I had never heard of this disease, and I figured most people in my neck of the woods hadn't either. Like most sufferers, I did my best to keep it to myself.
Sadly, that secret became more challenging once I began my professional career as an educator. What was I supposed to do in the classroom? I couldn't just jet off to the restroom each time my body contracted with the emergency signal.
So, what's a person to do living with the stigma of inflammatory bowel disease? Keeping quiet often increases psychological distress, which in turn, leads to even worse symptoms and quality of life. When trying to control an IBD, perceived stigma doesn’t help.
Breaking down the IBD stigma
Through writing, I ask that everyone get their families and friends to help break the taboo of living with an IBD. We need those in our inner circles to lift up their voices to raise awareness and educate others about these hidden diseases. Workplaces especially need to be considerate and understanding of long-term health conditions like Crohn's or colitis. Just because a person looks "fine" on the outside, doesn’t mean he/she is "healthy."
In reality, most sufferers downplay their condition for fear of retribution or judgment. Through greater public knowledge, the stigma can be reduced or possibly eradicated. But that requires awareness spread throughout the masses to truly maximize public support. Everyone needs to understand that the mental and emotional health of people with an IBD is as important as their physical health.
When did I finally reveal my "secret"?
It took me living with UC for 2 decades before I finally began speaking out to those around me. Waiting until the age of 40 created its own trauma on my body. So, I say, "Speak up NOW. Don’t wait." Finally, the best approach for family and friends is to ask their loved one about symptoms.
After 30 years of living with UC, what I know to be true is that no 2 people wear IBD in the same way. Colitis and Crohn’s look different for everyone. Those living with it should trust that they are their BEST advocate and know their body BEST.
Learning to talk about UC or Crohn's helps to reduce the stigma. Also, it educates others about managing an IBD. Through the pains of my own struggles and by speaking out, I hope I have achieved raising just a little more awareness. Now, I no longer suffer in silence.
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