Speaking as a writer: Words wield heavy power. Our written and spoken words are capable of mightiness. They can impart life-changing wisdom or inflict pain, whether intentionally or unintentionally. I feel I must be transparent about life with cystic fibrosis so that I can use my experiences to share learned wisdom and gain empathy. I also hope others can strive for understanding when discussing my life with CF.
A bit of pedantry: I view the term “sick” as a reference to transient sickness, like pneumonia or a cold. CF does not preclude me from ever feeling healthy. Exclusively using such a label is a disservice to people affected by CF. It also discounts that our lives are so often affected by acute sicknesses; bundling those issues with disease symptoms seems dismissive and inaccurate.
Secondly, and more importantly, the label stigmatizes us, reflects poorly on us, and “others” us. When people view the simple reality of having CF as “sick,” they revoke our ability to define our struggles in our own ways. It makes nearly everything we do an achievement “despite CF,” as opposed to a genuine, standalone accomplishment. I realize CF makes my life harder in a lot of ways, but every received congratulation is appended with, “That is so amazing, considering your CF!”
Last year, I ran a marathon. That’s an achievement for anyone, but I still commonly hear, “I can’t imagine how you did that. I can’t even imagine doing it and I’m healthy!” I understand people mean well, and this piece is not an indictment of that, but this column is an opportunity to educate and guide the lexicon surrounding the collective CF experience. When people say they can’t imagine doing what you did despite being “healthy,” it shows that they view you differently. It hurts to navigate the realization that they view you differently, even if they mean well.
Such phrasing can sometimes reflect a more genuine underlying belief, like a Freudian slip. I realize CF is a significant part of me and my writing, but when it’s hammered home that others view that as a major part of me, “CF” starts to feel like scarlet letters. It feels like I have a name tag: “My name is Tré, and I have CF.” I can never escape this disease, so I’ve tried taking control by being open about my experiences to guide what others learn about it.
The belief that I’m “sick,” or that others believe my entire existence is essentially a sickness, is pervasive and psychologically damaging. Some examples:
- The initial response to a cough is the embarrassing assumption of contagiousness.
- CF life expectancy is often one of the first things people learn about the disease. I got a tattoo of my late sister’s handwriting so people quickly become familiar with CF being terminal. Because of this, I feel obligated to hedge my wellness.
- Typically, people don’t know how to talk about the disease, so I feel responsible for boosting my education so I can share accurate depictions and facts.
These outwardly social aspects of life with CF become so burdensome when coupled with the mentally exhausting charge of anxiety over a tight cough or impending infection.
Maybe I’m wrong here. Maybe I’ve succumbed to a victim mentality. Maybe I’m a millennial who feels entitled.
Or maybe I’m part of a small community of individuals trying to make life as easy as possible for those with CF. Maybe I really care about compassionate human treatment. Maybe I want people to be understanding about my situation. Maybe I just want to feel like CF doesn’t separate me from everybody else other than the small population that understands this life.
My sister Alyssa and I discussed this a lot before she passed away. She hated feeling like people constantly viewed her as sick, so she strove to embrace the identity. In doing so, she inspired so many people, very obviously including me. She was the only person in the world I felt comfortable talking to when my health began quickly failing. Here’s my attempt at changing the dialogue a bit. So, please don’t label me as sick just because I have CF.
Follow along with my other writings on my humbly named site, www.trelarosa.com.
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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.