Letting the Secret Out

I often get asked why I find it so easy to tell someone new about my cystic fibrosis. The first thing I say in response is that it actually really isn’t the easiest thing in the whole world, it is just easier tell someone about it up front rather than keeping a giant secret.

When I was really young, or I would tryout for a hockey team or football team, my parents always used to tell whoever the important “adult” or the coach what I was dealing with. That way if something ever went wrong, God forbid, there could be a sense of calm and control for that person. For me, though, I took on the responsibility of telling whomever I thought necessary at a young age.

I do understand, though, why it is so hard for some patients to talk about it openly. It makes people feel very different, and I get that. I don’t care what you think, but it is human nature to stay away from someone who you think might be sick, that is just the honest truth. Just think about any time you were in grade school. There always seemed to be a kid with a runny nose and anyone, with or without CF, was always taught to keep his or her distance from that kid, I get it. Well, unfortunately, a CF patient might be in that situation more than once.

There are a few different “techniques” that I think I have mastered over the years when it comes to openly discussing a terminal (hardly) illness.

1 – When I was younger (not to say that I don’t still do this, I do but better when I was younger), and my friends were also younger, as well as the new people I was meeting, I would just talk about it very generally. There was always the question, “hey why are you coughing so much.” No little kid is going to understand the severity or the intricacies of the disease, so I always just said I had a lung issue. More than often the conversation would end there, unless I was dealing with the kid who thought he was the smartest kid on the planet, or the kid, at the other end of the spectrum, who wasn’t the sharpest pencil in the box, so to say. At that point, I would always say to myself, “well I can’t turn back now, so I might as well keep talking about CF positively.” That was the most important part; I always had to talk positively. The thought of mortality doesn’t quite hit kids until they are just about done with high school or even through college. Believe me, I still have some friends who think they are going to live forever. Unfortunately, that’s not the case. If I talked positively about CF in front of other little classmates, teammates or whatever, I never got any sympathy in return, which is exactly how I wanted it. It also made the other kids think I wasn’t that different because I wasn’t worried or stressed about myself, which was nice.

2 – As I have gotten older, there have obviously been situations when I have needed to tell someone about CF and what I have to deal with. The biggest of all moments, up to this point was when I got to college. I had heard horror stories of kids (I get that a 18 year old freshman doesn’t want to be called a kid, but that’s my way of doing things) hiding the disease for years and becoming really sick because of it. I had also heard stories of kids completely removing themselves socially from the college culture because they couldn’t deal with CF publicly. I knew I did not want to be one of those people. I wanted to be one of the guys from Animal House, so I decided to just go for it. With that being said, my roommate went to high school with me, so he knew all about CF, to an extent, so maybe that made things easier, but still it was my job to break it to all of our new friends, not his. So, I used what I call the brunt force technique. The first night of college when it was time to do my treatments there just happened a bunch of fresh new faces in our room just hanging out trying to develop new relationships, just like we were, so I set up my nebulizer and vest, and went to work. At first many of them didn’t know what to say or how to react, then finally a brave soul asked me what the hell I was doing. The key is to wait for them to ask, once someone did, I laid it all out there and told them I had CF and this is what I had to do every day. Before I could stop talking about it, most of them chimed in saying something about how they knew what CF was and maybe even had a distant friend with the disease, or something like that. Two of the kids from that night ended up living with me for the next three years, so I would say it worked out. If I am ever in a big group of people, or staying somewhere new overnight, that is really the easiest way to handle it, the props (treatments) are really the key part there.

3 – This technique is probably a little more discreet, it also uses a prop, but is better suited for a smaller group of people, or even a date (if you’re into that sort of thing). I carry my daily pills around in a pillbox. It holds my enzymes and any antibiotics I might be on or even, Advil, Tylenol, and really just all those lovely things. If I am on a date, hopefully more often than not (a guy can hope), I will (not by accident) leave my pillbox on the table for a period of time. It may not seem like a big deal, but it’s there and it definitely stands out. Then, when the meal comes, I just open it up and start taking my enzymes like I am eating candy. If the girl (let’s stick with the date scenario) doesn’t say something about me taking the pills, because we all know how nervous she is to be on a date with ME, then maybe I say something or cough like I was choking and make mention of the pills. This is a proven formula, it works every single time, I promise. It breaks the ice, she will ask why I take them, and then BOOM, there’s the open door, now I can calmly tell her about cystic fibrosis because she’s interested. Now, since I’m on a date, not only do I not have to listen to her talk about herself, but also I don’t have to pretend I am interested in her. I, on the other hand, have something completely new and unique that she wants to listen to. There you go, I got you a new girlfriend and you were able to break the ice.

4 – My last technique is really just honesty. If it ever comes up in conversation, there is no negative side to saying, “hey, I have CF.” I have done it plenty of times in casual conversation, and just like my little date technique, a conversation will carry on. It is pretty easy to tell how far in depth to actually go based on the conversation, and that certainly will be on a case-by-case basis.

I have never met anyone that was completely turned off by the fact that I have CF. Most people won’t know what to say, and that is totally okay. Some might actually know what CF is, but I normally do all the talking anyways just so there is no confusion or fear that it might be contagious. It is important, though, to always sound positive and confident. Disaster will strike if the conversation turns negative, but here’s the deal, there is no reason to not be positive about your outlook on the disease. It is a pretty deadly thing that you are dealing with and you, if you have CF, have made it this far, that is something to be very proud about. Don’t let it get you down. As far as I am concerned, I am winning the fight, failure is not an option for me, and I want the person I am introducing to the disease to know that.