Bridging the Divide Between the Individual and the Community

When I was asked to write this column over two years ago, I was thrilled, but I wasn’t quite sure what I wanted to write about. I knew I would have some leniency to tackle different subjects, and I didn’t want to be boxed in. But I also wanted to maintain a common thread across all of my columns.

I considered what was important to me as a person with CF, in terms of how I live my life every day, and regarding what motivated me to pursue blogging in the first place.

I realized that while my passion for CF research and science was an important factor in my life, it wasn’t the only factor I cared about regarding the patient experience. Science, for all of its positives, still tends to disregard the nebulous world of individual experiences and how they come together to form a communal experience with similar characteristics.

As individuals, we are a complicated amalgam of different identities, passions, and experiences; as a community, we are bound by a shared identity of having cystic fibrosis. But even that shared identity isn’t really all that shared. Of course, every person’s experience with CF varies, but it’s even more complicated than that as we consider how to define what CF even is.

This is where science gets something right. The scientific process is mostly unconcerned with how we humans define the world, even as it tries to define the world. The scientific process is about uncovering more accurate depictions of the world around us, and then helping to improve the way we articulate what that depiction of the world looks like.

Cystic fibrosis is a disease that we have defined, and the process of defining diseases is a human construct meant to help us treat it. This is not a bad thing! It’s just a reductive way of processing the world.

CF existed before Dr. Dorothy Andersen first called it “cystic fibrosis of the pancreas” in 1938, but in naming it, humans now had something to investigate. Even the history of the mutations that caused CF, and their potential evolutionary reason for existing, are not clearly understood. But how much would it improve the lives of individuals with CF if we had a firmly understood cause for its existence?

It’s commonly stated that about 70,000 people across the world have CF. I believe that as we learn more about the disease and how genetically complicated it is, we will need to relax our diagnostic criteria to better understand those who are currently at the edges, or tragically left behind altogether, based on our current understanding. In investigating these apparent outliers to deepen and enrich our understanding of a complicated disease that can be caused by thousands of mutations, we must bridge the divide between the individual and the community.

When I started this column, and writing in general, I wanted to provide people with a perspective about what an individual’s life with CF looked like. In this world, we are expected to use every struggle as fodder for the inspiration of others or to motivate ourselves. My life as a cisgender white man with two copies of the most common mutation of CF is not an outlier, but rather part of the norm.

That isn’t to say my experience isn’t valuable or relevant, but I don’t provide that much of a unique perspective. For this reason, I’ve sought to understand the broader implications of external factors, such as how American society is considered the norm, which leads to the neglect of equally valuable experiences of individuals with CF and subcommunities across the world, and how internal factors within the U.S., such as race, gender, and socioeconomic status, affect the community within CF.

In this column, I’ve waxed poetic about science many times. I do believe science generally represents humanity at its best, but by considering the individual and the community through scientific, sociological, and compassionate lenses, we can bridge the divide between the supposed outliers, the individuals, and the broader community.

By considering how individual experiences are all valuable, and how those experiences come together into a global whole, we can ensure that everyone with CF, no matter their mutation, gender, age, race, class, or country, has a chance at a brighter future. Every day we neglect these individual experiences is a day lost toward a future in which CF no longer causes suffering for anyone. It’s incumbent on us to take it seriously, immediately.

Follow along with my other writings at my humbly named site, www.trelarosa.com, or subscribe to my newsletter “sonder, essays” at trelarosa.substack.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, and are intended to spark discussion about issues pertaining to cystic fibrosis.