a woman leaving the house, leaving her "happy mask" behind

Putting on My "I'm Not Sick" Face

During the early years of my ulcerative colitis diagnosis, I used to go about my days wearing a mask. Not a surgical-style mask like many of us have worn throughout the pandemic.

No, my mask was a perfectly frozen one in the form of an "I'm not sick" face. It was one I applied each morning and removed in the evenings before heading to bed. In short, the "I'm not sick" face was a heavy load that left me feeling exhausted every day. Let me explain...

Learning to hide how I really feel

As a child, I was taught to hide my true feelings. "Suck it up" and "big girls don't cry" was the mantra repeated often during my childhood. I was trained to believe that no one liked "whiners" and everyone has problems. So, I learned to pretend everything was "fine" in my world – even when it wasn't. I learned to become an actor in daily living.

Even regarding physical and mental health, I had to fake it. When my UC diagnosis arrived at age 19, I continued my acting performance by wearing my perfect "everything's fine" face.

Whether my colon clamored with its painful roars, or bloody diarrhea had me on the run to the bathroom, or mucous discharge fatigued my body, I still acted like I wasn't sick. That fictional lifestyle can only last so long. And over the years, the performance lights became too blinding for this actress.

Hiding my pain and symptoms with UC

As façades go, putting on an "I'm not sick" face doesn't help anyone struggling with IBD. It weighs too much and compounds the exhaustion that is already associated with Crohn's and UC.

So, why do we do this? Why do we pretend we are "normal" when painful flares rage internally? Personally, I think upbringing and messages from the world tell everyone to "just deal with it" and "no one likes a complainer." The older I get, the more I realize how harmful those messages are to each living soul.

But no one has a handbook on how to behave along the course of a disease. Therefore, human nature causes us to default to not bothering anyone else with our problems and pain.

Feeling like a burden with UC or Crohn's

During 30 years of living with UC, I thought it best to pretend that I felt fine. Even if I spent all morning trapped on my commode, eventually I would pull myself together to get out the door and head to work. Once there, I never said a word about how miserable I felt. Why burden others? I just suffered in silence.

In social settings, I would do the same. So, I'd plaster on the fake smile and just be "one of the girls" having a good time. Even if that time included me running to the restroom over and over again, I still stayed quiet and hoped no one counted my restroom trips. That life of avoiding the truth drained me.

My symptoms are real. My pain is real.

Finally, at age 50, I had my "a-ha" moment. I realized that all my pretending was prolonging and exacerbating my colitis flares. One day, sitting in the bathroom waiting for my angry colon to settle down, I thought, "Why am I doing this to myself?" My gut told me in its ugly way that carrying the "fake it until I make it" mindset was not helping matters.

In fact, I realized that wearing the "I'm not sick" face worsened my symptoms.

At that time, I thought, "Well, here's my midlife crisis." I finally understood that discounting my true feelings was directly tied back to my upbringing. Attempting to "suck it up" invalidates a person's authentic self. It sends the message that you aren’t allowed to feel pain when pain clearly exists.

Opening up about my UC at work

On that day, I messaged my boss that I wasn't coming in to work. More importantly, I communicated bluntly to him that "my colitis isn't allowing me to get out of the bathroom."

I had never been that specific about my condition during my career. Usually I just said I was sick when I couldn't make it to work. But saying that a UC flare was holding me hostage in the bathroom felt more freeing and real.

This breakthrough shattered my façade.

Being honest about the effect of my UC on me

From that day forward, I began to speak honestly about my health. If I get invited out to a social event, and I don't feel well, I just reply in kind with, "Thanks, but my gut isn't cooperating today." Or if someone asks what it's like living with IBD, I reply with the following: "Have you ever had gut pain and diarrhea? Imagine that experience daily. That's what my life with UC is like."

Most people, I've discovered, are understanding. Even with family, I know they don't fully understand. No one does unless they've lived with perpetual digestive issues. But I don't care to tell anyone, "Naw, my colon just won't let me join you today."

No longer do I wear the "mask of normalcy" when I'm in pain. It's just not worth compounding the symptoms.

Relieving this pressure helps relieve my symptoms

And you know what? My flares don't last nearly as long as they used to when I was pretending. I no longer care what people think about my pain. And honestly, I believe the whole premise of "be brave and just ignore your pain" does more damage to us than most are willing to admit. It invalidates the truth.

In the end, I challenge each of you to shed the "I'm not sick" face. Find your own way in your own words to say, "I'm not fine. I hurt. Please give me the space to sit with my pain." Hopefully, if people truly love and respect you, they will embrace you during the painful days of Crohn's and colitis. If not, you probably don't need those people in your life.

How open are you about your IBD?

So, what words can you use to tell others how painful life is with IBD? Please share them with us. You never know when what you say might help someone else find the words for themself.

"Wearing a mask wears you out. Faking it is fatiguing. The most exhausting activity is pretending to be what you know you aren't." –R. Warren

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