Is Being Transparent About Chronic Illness Inappropriate?

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by Nicole Kohr |

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In honor of the release of “Tick, Tick… Boom!” I wanted to mention one of my favorite composers, Jonathan Larson, and one of my favorite Broadway shows, “Rent,” which he wrote when he was a young, struggling artist and chronic illness patient. The story, which follows a group of New York City artists who have financial burdens, touched my heart as early as age 7.

Some might argue that “Rent” isn’t appropriate for anyone younger than 16. However, when you’re born and raised with a chronic illness like cystic fibrosis, you’re trained to accept and talk about inappropriate topics, such as body parts and bodily functions. I’m discovering that there is a lot about me that is inappropriate.

Body parts and bodily functions

My best friend and I met in kindergarten. She’d teach me things that she learned from her older sister, and I’d teach her about grown-up topics. Like magic — and body parts.

One afternoon in kindergarten, I explained to her what certain body parts are used for. She was taken aback. Apparently, I was “naughty” because I used anatomical phrases such as rectal issues. I was supposed to have used an alternative word, such as “who ha.”

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I shrugged it off, assuming my best friend was weird, but I have received similar reactions over the years. Take mucus, for example.

If a nurse walked in, I would say, “Would you mind taking a look at my mucus? The new color may indicate infection.” The nurse would grab a sample cup and wouldn’t bat an eye. On the other hand, if you say that in the middle of your kindergarten field trip, you land in timeout. I made six enemies that day — and two best friends.

Apparently, medical jargon is a specialty topic that should only be discussed in a medical setting. I find that unfair. My entire life is a medical setting, so I have to avoid talking about most of my life because my chronic illness makes others uncomfortable? Using straightforward, anatomically correct language should not be taboo. Frequent flyers like myself are exposed to this language from a young age, so defaulting to words like “who ha” seems sophomoric.

Chronic-illness inappropriate

I was always excited when my mom let me wear my messy hair and pajamas in public. To this day, I try to sneak out of my house without a bra. You know why? Getting dressed is exhausting.

Just before my bilateral lung transplant in June 2019, taking a shower was my kryptonite. If my mom asked me what my plans were for the day, and I said shower, she and my husband would prep the master bedroom with three days worth of activities I could do while bedridden.

I understand the importance of getting dressed. It gives you a boost of energy and confidence. Books are judged by the cover, so your appearance becomes someone’s first opinion of you. Yada yada. Doing hair and makeup, along with choosing an outfit, require spoons — a term that means amounts of energy —  that I don’t always have.

I’ve never liked getting dressed, but one thing that’s new for me is that I’m more willing to speak up and complain. I have always been a meek and cooperative patient. I never made a fuss. I empathized with the staff and all of their hard work, and felt it was in poor taste to make their jobs harder. Plus, I knew I’d work with them again, so I wanted to maintain a good reputation.

But as I’ve aged, I’ve learned how many times my mom had to fight and advocate for my care. Easing into adulthood meant that I naturally took on more of that advocacy, and that has meant sometimes being a little less tolerant and a little less patient.

I recently sent an email that read, “As this is my sixth time emailing within a two-week period, in addition to the several voice messages that I’ve left, I ask that you please respond to me within the next 48 hours. Your delay is putting my health at risk, and as an immune-suppressed transplant patient, I am not willing to jeopardize my care due to a lack of communication.”

I never, ever saw myself sending that kind of email. High school me would have considered it inappropriate. There came a time, however, when I realized my new lungs were more important than avoiding a conflict.

Anyone who has read any of my columns knows that I’ve been on a journey of transparency since my transplant in 2019. While many people are encouraged to answer the question, “How are you?” with an abstract response, I tell them the truth about life with a chronic illness. It’s inappropriate to some, but a gateway to a lasting relationship with others. The right people will care about my story.

Arguably, “La Vie Boheme” is the most inappropriate song in “Rent.” To me, it’s the most impactful. Taboo sayings urge people to listen and advocate. So, in the words of Jonathan Larson, here’s to “Emotion, devotion, to causing a commotion/ Creation, vacation/ Mucho [who ha] …” You know the rest.

Check back every Thursday to read more of my story.

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.

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