Cystic fibrosis always reminded me of an overbearing parent (not that I have any ─ love you Mom and Dad!). CF was always nagging me to take care of myself, prompting me to smoke a nebulizer or pop a pill. Not only that, but it usually did this conspicuously and in front of all my friends. There would always be a telling symptom of some kind ─ wheezing, coughing, gassiness...
One such example has arisen recently with the rising trend of backyard bonfires. (Maybe it's not a trend, but just that my peers and I have reached an age where we are allowed to play with fire.) I'm not sure what it is, but for some unknown reason, people my age love fires. I've actually listened to people brag about the quality of their fires, claiming that they can set fire to things far better than anyone else. Personally, I think that fires are dangerous and impractical. Plus, when you attend a bonfire, you leave smelling like an arsonist.
The bonfire ritual is further complicated by CF. The fire's smoke will seal a CF patient's lungs like an airmail envelope. Thirty minutes after a fire is started, I invariably lose my voice from excessive coughing. People will comment, and I tell them that I smoked a cigar earlier. This inspires awe in groups of street cred-hungry teenagers. Besides, who can prove that I didn't? I smell like it, I sound like it...
Situations like this arise frequently in an adolescent CF patient's life. They're awkward for many reasons, but the biggest of which is that no one wants to bring the party down by talking about a chronic illness.
With that said, it's alright if you're not comfortable telling people that you can't roast marshmallows because your airways will close or that you can't have a drink because you're diabetic. However, you must formulate avoidance maneuvers.
The most obvious of which is to opt out of get-togethers where your health will prevent you from participating in the main event (i.e. drinking or burning a house down). However, you may be cringing at that suggestion as you read it. So my "have your cake and eat it too" advice is to compromise. If there's a fire, hang out with the indoors crowd. If there's drinking, find a red solo cup and fill it with water (no one will know the difference, believe me).
In the chronically ill community, the "you can still do everything" message is thrown around a lot. I would love to tell you that it is true. Oftentimes it is. But there will be situations where you have to think of your health. It's the frustrating reality. Sometimes you can't keep up with the crowd, show up to the party, or start a fire. Does this mean that you have to live as a friendless, lifeless recluse? Absolutely not. It just means that you have to pace yourself and stay upwind of the flames.
