Approaching an Unpredictable Life with Practicality

Editor’s Note: In his first post for Cystic Fibrosis News Today, Gunnar Esiason writes about his experiences in managing CF entirely on his own for the first time when he went away to college in 2009. Gunnar’s column explores the uncertainty that surrounds those with cystic fibrosis as they fight to live their lives to the fullest in spite of the restrictions the disease can sometimes place on people in their everyday lives.

Cystic fibrosis is anything but consistent. Every day is different with highs and lows that don’t seem to follow any sort of pattern, and unique obstacles that come without any rhyme or reason.

No two cases of CF are the same; it’s not a cookie cutter disease, but there are effective ways that all of us stricken with it can use to overcome many of the challenges thrown our way.

I’m 25 with cystic fibrosis, so I like to think I’ve gotten this far with a little hard work and some major help from my support system, but ultimately, I know that I have had so much success in dealing with any number of issues stemming from CF because I refuse to hide behind the disease.

There is no reason for any of us with cystic fibrosis to hide from it or feel ashamed because of it. Whether we like it or not, CF is a part of our identity. It certainly doesn’t have to be the whole picture of our personalities. It sure as hell isn’t mine, but it is there, and in many ways it shapes how we live our lives.

As I have gotten older and the disease has progressed, I have learned to make health-conscious decisions and judgments that take into consideration my best interests.

Here’s an example.

I knew I wanted to go away for college. I wanted to get out of the house and not only prove to myself that I could live on my own, but also take care of my health. I don’t think I realized quite what I had gotten myself into when I arrived at Boston College in August 2009, but I immediately found myself faced with a question: Do I tell my peers living around me that I have cystic fibrosis?

Well, the easy answer was yes, because in the age of information anything anyone wanted to know about me was only a Google search away. In many ways my life has very much been in the public eye, from the time I was on the cover of Sports Illustrated in 1993 with my dad (former NFL quarterback Boomer Esiason), to the times both ESPN and HBO featured my family in stories about our fight against cystic fibrosis.

As an 18-year-old, though, I wasn’t looking at things with that kind of simplicity. I’m not sure I realized I would be faced with what I thought was a paramount social decision, but there I was, on my own for the first time, faced with a question that would ultimately dictate how much of my personality would be interpreted. I could have either hidden my cystic fibrosis from everyone and begun a web of elaborate secrets and lies or just come clean. I chose the latter.

My first night at Boston College, with 10 strangers in my room, I started doing my treatments with the Vest and all of the usual nebs. It wasn’t exactly what I had in mind for my first night away at school. I thought college was going to be like the movie “Animal House”

from moment one. I was wrong.

It was awkward for a good 30 seconds (which felt like the longest 30 seconds of my life) after I strapped on my Vest and turned on the nebulizer, but finally a brave soul asked what I was doing. I said that I have cystic fibrosis, and this is what I have to do every single day.

One by one the guys in my room started asking questions, all of which I answered as plainly as I could, and to my surprise, and probably a little bit of relief, one of my new friends even said that he knew someone with cystic fibrosis. It felt like an enormous burden had just been lifted from my shoulders.

To this day I can confidently say that most of the guys in my room that night have turned out to be some of my best friends.

I still credit that moment as one of the most eye-opening experiences I have ever had in my life, and because of it, I always advocate for people with cystic fibrosis to share their stories.

Beyond that, I think there are two reasons why people with CF shouldn’t be afraid to open up.

First, it helps build trust. The basis of every relationship, whether it be between two friends, a significant other, a parent, sibling or whomever, is trust. Trust starts where lies and secrets end. Now that doesn’t mean I walk around midtown Manhattan with a billboard on my forehead that says “I HAVE CYSTIC FIBROSIS,” because that would be ridiculous.

The way I see it is that if someone is going to play a significant role in my life, or at least have somewhat of a consistent role in my life, then I need to develop a sense of trust and honesty with that person. If that other person can’t see eye to eye with me over my disease, then why should he or she be in my life to begin with? I’d rather know how someone would react to knowing that I have CF than simply guess.

My second reason is awareness. In many ways, awareness and education surrounding not only cystic fibrosis, but all rare diseases, are just as important as monetary contributions to research and charities supporting CF, or whatever the disease may be. Cystic fibrosis is rare. Less than .01 percent of the American population suffers from cystic fibrosis. It is our duty as people with CF to educate the world and drive people to support our cause. There is no better story to use than our own.

So that’s my secret. In the face of an enemy that is constantly changing, I use the very thing I am fighting to build an effective support system to overcome anything thrown my way.

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.