Coming Out as Chronically Ill

Growing up, my grandmother would often repeat the saying, “Denial ain’t just a river in Egypt.” Awful pun aside, I never really understood what she meant. As children, we are taught to share our feelings and to tell the truth. Always. It was only this year — when I faced my greatest health challenge yet — that I truly felt like I was now in denial.

Many of us with chronic illness are excellent pretenders. We often hide our pain and suffering in exchange for the disguise of a person without illness, something we know we’ll never be.

I’ve never been one to admit my weaknesses. Whether it was grade school struggles with math or a stomach-ache that wouldn’t go away, I’d always try to overcome my challenges without sharing them. I chose to pretend that everything was fine — that I was always okay. And this method served me well for about 16 years. I’d often miss school or cancel plans, blaming it on being tired or an essay I had to write. The truth was hard for me to swallow, let alone share with friends — I was sick. All the time.

I’ve always had health challenges. Colds that lingered, asthma, and chronic headaches were constants growing up. However, in high school I faced a reckoning that forced me to change my habits and stop denying the truth.

I was 16 when my health issues became impossible to ignore. I was facing multi-day hospital stays, frequent emergency room visits, and powerful drugs that made me puffy, irritable, and constantly tired. Sometimes, I’d try to describe how I felt to my friends, but 11th grade was filled with other concerns — namely, boys, college choices, and cliquey drama. Although they put in valiant efforts, my complex health just did not fit into my friend group’s high school chit-chat.

At 17, I decided it was time to come clean about my chronic illness. I told my friends what my body had been through and what I would continue to face for the rest of my life. They were shocked. There were statements like, “Why didn’t you tell us?” and, “We would have visited you!” But, most of all, I heard, “You don’t look sick!”

They were right.

To the observer, I looked like any other girl my age. Thanks to makeup tutorials and carefully curated outfits, I’d mastered hiding both unpleasant medication side effects and the physical implications of my illness. After I shared the realities of my illness it seemed like they treated me differently. I was no longer just their friend, teammate, or student — I was a patient in need of care, someone to be pitied. Pity was what I always feared most; so, I stopped sharing about my struggles and eventually my illness was once again invisible.

I was grateful that my illness wasn’t noticeable. At the time, it seemed logical: If I didn’t reveal what was going on inside my body and the physical struggles I faced daily, then my illness couldn’t be real. Soon, denial of my chronic illness had become my routine. I feared that illness would erase my identity as a driven and motivated young woman and replace it with the image of a sick person.

By my freshman year of college, I’d been in remission for a few months and even felt healthy enough to go out and do all the activities my peers and dorm mates enjoyed. I went on dates and joined a varsity sports team, without having to reveal that I lived with chronic illness. I continued to think that illness made me different and that, in the eyes of others, it made me weak.

But this summer, I no longer had the luxury of denial. My condition worsened and soon I required daily intravenous medication. Having a PICC (semi-permanent IV) placed seemed like my ultimate nightmare. It was August, too hot outside, and suddenly I had three tubes always hanging from my arm. I had to say goodbye to swimming, sports, and tank tops. Meeting up with friends or heading to work filled me with fear.

By this September, my junior year, I was still connected to a medical pump for several hours a day. Hiding my illness was no longer an option.

Walking onto campus with my pump and bag of medication tucked into my backpack opened a new chapter for me. I decided not to fight anymore. Slowly, I began to end my extended period of denial. Choosing to open up about my illness brought questions that I couldn’t ignore or brush off. As I explained why I had tubes hanging from my arm, I chose to accept my new reality. I soon learned that being perceived as weak was not the reaction most had to my previously invisible illness. Friends and colleagues expressed their admiration for my strength, but inside I still felt like a coward. If I was really strong, would I have needed to share my hardship and ask for help?

The truth is, I may never feel as strong as those around me claim I am, but I have learned gratitude from the health challenges I have faced. I know that my illness is with me for better or worse, but for now I choose to be better, or at least to accept myself.

Header image via Giphy

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