When the Invisible Becomes Visible

I tried to hide my Crohn’s disease from others for years. When I finally couldn’t hide it any longer, I found new freedom and meaning in life.

For most of my childhood and adolescence with inflammatory bowel disease (IBD), I used the invisible nature of my disability to hide my difference from my able-bodied peers. Especially during adolescence, when differences are typically not celebrated, I hid my Crohn’s disease from everyone I could.

My worst fear as a teenager with IBD

I believed if others knew that I had IBD, that I would be a social outcast. I thought I would never date or get married. I was convinced that I would repulse people. I felt as if my social survival was dependent on hiding the fact that I had IBD.

Hiding the actual Crohn’s disease was not hard. No one could (or can) see the ulceration, fatigue, fistulae, or strictures that plagued my body. It was harder, though to hide my IBD symptoms — like bowel accidents, nausea, and hours in the bathroom. So, I developed complicated routines to hide any evidence of my IBD.

I carried spare underwear in my purse to easily clean up after an accident. I avoided eating before social activities. I became an expert at the art of deception and often blamed bad food on any stomach upset that I experienced.

However, when I started requiring nasogastric (NG) feeding tubes and eventually ostomy surgery, the invisible became visible. With this change from invisible to visible, I was forced to tell others about my illness. As a result, I learned what I had been denying myself through attempting to hide my Crohn’s disease — connection, empowerment, and freedom from shame.

Being forced out of the IBD closet

I was halfway through my junior year of college when my gastroenterologist suggested we try an NG feeding tube. New evidence at the time suggested that using enteral nutrition (where you receive all of your caloric and nutritional needs via liquid formulas) for several months could help people with IBD to achieve remission. Because the formula is easier to digest than solid food, it allows the bowels to rest and heal. However, the formula was also extremely unpalatable, and I needed large amounts of it, so a feeding tube made the most sense.

The idea of it was mortifying. However, I did not have much choice in the matter. I had just suffered a GI bleed, the medication I was on was failing, and my doctor had already advised me that I may need to take off the upcoming semester to have ostomy surgery.

I was afraid that if I took off a semester from college, I would never go back. So, in an attempt to delay the ostomy surgery, I consented to the feeding tube. I left my appointment that day with it snaking over my cheek, tucked behind my ear. I looked in the mirror and felt defeated. There was no way I could hide the tubing coming out of my nose.

Arriving on campus with the feeding tube was terrifying. I had no idea how other people were going to react. I imagined that I would have to deal with insensitive or cruel comments. I convinced myself that I would be ostracized, but I also had no choice but to confront my fears.

As people asked, I explained that I had Crohn’s disease and that the feeding tube was giving my bowels a rest, ensuring adequate nutrition. It would possibly help me achieve remission. I was shocked when I found acceptance instead of social isolation.

A weight I didn’t know I was carrying was removed

Several weeks into college life with the NG tube, a friend and I played cards when he brought up the tube.

“You know what I like about you? You wear it. It doesn’t wear you.”

With that sentence, I felt relief in my core. He didn’t see me as a Crohn’s patient who was repulsive. At that moment, I realized that the tubing was not a source of shame, and I carry his words with me to this day.

As I told more and more people about my experiences with Crohn’s, I began to realize that IBD and the problems it caused were also not sources of shame. The invisibility of Crohn’s had allowed me to hide in shame, with my anxiety dictating to me a false perception of how others would react. I learned that reality is often far better than what my imagination dictates.

Not only did I begin to lose the shame I had carried over having an illness I had no part in causing, but also, as I shared more about IBD with others, I felt tremendous relief in not having to hide anymore. I developed stronger and more authentic friendships. I was able to receive support. Others shared with me about people they knew who also had IBD, and I felt less alone. With every individual I told, I gained greater confidence.

How and why I open up about Crohn’s disease today

Since that first feeding tube placement, my illness has had varying levels of visibility. Today, I have a permanent ostomy and a central line. I can choose to hide these, but also, I have found that I don’t need to.

When I was hiding and ashamed of Crohn’s, I worried about how others would perceive me if they found out. Today, with everyone in my life knowing about my illness, there is nothing to fear. It’s also much easier to be open rather than spend time and energy trying to hide a significant part of my life.

When I meet someone, I do not immediately lead with Crohn’s. However, as soon as it can naturally come up in conversation, I bring it up. I share about it on my social media channels so anyone who becomes a friend quickly learns that I have IBD. I also choose not to put much effort into hiding the visible parts of my illness. For example, I don’t try to hide my ostomy when I go to the beach.

Being forced to be open about my illness, through increased visibility, allowed me to embrace all parts of myself, including my Crohn’s disease. Not only did I start embracing who I was, but also, being open with it has allowed me to meet others with similar journeys and advocate for the larger community. Making meaning from having this illness and knowing I am not alone is so much more freeing than trying to hide.