Imagine yourself breathing through a snorkel with some water trapped in the bottom of it. Every time you breathe in, it gurgles, and you try to control every inhalation so you do not choke and start coughing. This is how I explain in one sentence to someone who has never heard of cystic fibrosis (CF), what it feels like to live with the lung disease. But as a person living with CF, I ask "What is the value of public awareness of cystic fibrosis, and how is my life and the life of 70,000 others directly impacted on the daily level by public awareness efforts?" 

In 2017, I worked with others to have May declared as CF Awareness Month in both the Florida House of Representatives and Senate, along with obtaining a Gubernatorial Proclamation, and we lit up the Florida Capitol in purple lights. 

But I often wonder, what did that really accomplish? Do such actions of shaking politicians hands and sharing about CF really impact my life directly? What is the value of public awareness to those of us living with this genetic disease? 

For me the answer is in how a person with cystic fibrosis experiences response from the public about their disease and how that causes them to view themself, which can directly affect their treatment adherence, level of suffering, physically and emotionally, and ultimately their lifespan and quality of life. The challenges of CF are not just physical but are also psychological and social, which can be more difficult and abstract to deal with. 

Growing up, I was rather shy about my cystic fibrosis (CF). My parents were organizers of some of the earliest Great Strides walks in my community, and while I knew it was for CF fundraising, I did not realize that I was at the center of attention for the walk, nor did I want to be 'special' or set apart as a showpiece. I was in a sense, 'in the closet.' There is still some of this present in my adult life. You can even see in the video below from that 2017 congressional recognition a level of awkward discomfort on my face as the proclamation was read.

I have been genetically lucky in some sense that my CF has been classified as 'mild to moderate', whether it is due to my actual CF genetic mutations, or due to other genetic factors such as low inflammation response. Because of that, as I have grown up, I have carried a certain element of 'survivors guilt' in feeling as though my case of CF was not really representative of the much greater severity and struggle faced by my peers with CF. For this reason, I feel hesitant at times to 'advocate' because I do not want people I educate to think that CF is 'easy' or that looking healthy means there aren't people continuing to suffer and die from CF.

A second hesitation that I carry is the role of running an organization to help people with the same disease as me as my full time career. Professionally, I find that I put my own CF in my back pocket, because my focus and my passion is on helping others with CF to find improved quality of life through exercise. But in hindsight, I neglect at times to illustrate in public what MY life with CF really is and what that looks like. I sometimes take it for granted that the public already knows what life with CF entails, and skip right over that illustration to focus on the impact the CFLF strives to make in the community.

But recently, especially with the release of of the blockbuster movie Five Feet Apart, and with this month of May as CF Awareness Month, I have continued to challenge myself with the question of "What value is there in building public awareness of cystic fibrosis?"

Yes, sure, it is a primary opportunity for fundraising to have a month focussed on the disease. And on a political level it can at least bring a familiarity to any public officials who may have a loved one with CF, or who have a relationship built with the CF community, which hopefully would effect decision making around health care and insurance related bills.  

But as a patient, I can't say that I personally feel the effects of any of those impacts. So I challenge myself again, "What value is there in building public awareness of cystic fibrosis?"

I do not think I am the only person with CF who has experienced pity, sympathy, judgment or even possibly discrimination based on having a chronic disease that is only partially visible from the outside. When it IS visible, there have been glaring looks and even comments of 'you poor thing.' But when it is NOT visible, there seems to be little understanding of the weight, responsibility and hard work that is required to result in the disease looking invisible from the outside. My fear growing up was that if people knew I had CF they would judge me, and even worse, be afraid of what they did not understand.

This tremendous weight to carry feels discredited and de-valued when someone responds to my having CF with "Oh that's like asthma, right?" or "Yes, I knew someone with that, or was it MS?" CF is more than just two letters. It is hundreds of thousands of pills, several hours of therapy everyday, enormous anxiety and stress of battling insurances and pharmacies every year, and most importantly for me, it occupies an incredibly LARGE amount of my mental capacity to remember to do and keep up with everything needed to keep me healthy.

To have someone respond by saying, "Wow, you have cystic fibrosis? I know what that is and I commend you on the work that has gone into being here talking with me," creates a sense of pride in our disease instead of shame in hiding it.

That is why I share publicly about my cystic fibrosis. Because I AM PROUD of the enormous load that I, and 70,000 other people in the world carry, just to breathe.

So my own answer of the value that I see in public awareness is for the value of people actually living with the disease. I want every person growing up with CF to feel that this challenge in there life is a VALUE ADDED to their character and their will to survive. I want every person with CF to realize the opportunity given by this disease to appreciate every moment of every day, and to value every relationship. And I want every person with CF to BE PROUD of the work they do to live life and to be able to give back to society in some way. 

For me, the goal of public awareness is to enable people living with this often invisible disease to feel as though it does not need to remain hidden, because there is real detriment to keeping it hidden physically and psychologically.

Public awareness can carry a respect and power that fuels patients to not hide from their CF, because that can mean death. I encourage others with CF to be okay with educating, sharing and establishing pride in letting people know that CF IS NOT EASY in any capacity. I believe that awareness will command respect, which we all deserve.  

As someone wanting to support, what are you willing to do to contribute to public awareness? Social media can be a powerful tool.

Maybe write a post or share a picture of how cystic fibrosis has touched YOUR life. 

Maybe put a filter on your Facebook profile image recognizing CF Awareness Month?

Or even go as far as setting up a personal Facebook fundraiser for a cause that is closest to your heart.  

Large or small, your contribution matters and can help the life of every person with cystic fibrosis be just a little bit easier.

 

Help Others Live STROnger and LOnger! - #STROLO

 

 

Brian Callanan is currently 42-years-old, and was diagnosed with cystic fibrosis at birth.  He is the Founder and Executive Director of the CFLF, and practices an active lifestyle primarily through swimming and cycling on and off road, but also enjoys snowboarding, hiking, sailing and rock-climbing. You may email him directly at brian@cflf.org.