Dealing With Awkward CF Situations

Although having cystic fibrosis can lead to awkward situations, dealing with it with humor and grace has helped me put them in perspective.

| 5 min read
Mara-Cray
Mara Cray
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I have a pretty firm grasp on the meaning of the word "awkward." In an unfortunate flirting attempt, I started to ask a guy how he was doing but instead said, “hewyerder.” I once tried to blow out the candles on my brother's birthday cake and whacked my head on the very solid table. I boarded the wrong school bus going home -- not when I was little, but on the first day of high school. I tried to get into the wrong car before my driving test.

Clearly, I can speak with authority on this topic.

My personality can be described as primarily awkward, and that's before you factor in my cystic fibrosis. I don't know if there is such a thing as a glamorous illness. But if there was, CF wouldn't be it. There are digestive symptoms, coughing fits, projectile mucus -- all of which can be highly conspicuous.

To handle these things, I think people with CF have to redefine the word “grace.” To a normal person, it means exuding poise at all times. With CF, this is not always possible. Your life is filled with clumsy and unattractive things (you should have heard the coughing fit I woke up to this morning: über feminine). So instead of learning “grace,” we must learn “grace under fire.” You'll learn that if you don't feel like drawing attention to a coughing fit, you can step into a bathroom stall and become the Anonymous Hacker.

You'll learn that you don't have to explain your disease when you don't want to and most importantly that most people aren't even aware of it until you tell them.

Of course, some of the most difficult situations to deal with are when people do notice that you're sick, and they become verbal about it. I had a professor this past year who would let out an astonished “Ooo!” every time I coughed. I've had countless people comment on my sweaty palms, an odd but prevalent symptom of CF. This is to say nothing of the situations that are profoundly upsetting. Once, my grandfather asked me flat-out how long people with cystic fibrosis live, like I was a goldfish he was thinking of buying so long as I wouldn't float to the top of the bowl too soon.

It took a bit for me to understand that although my grandfather was a decent person, he did not have the capacity to understand chronic illness. This became clear when I discovered how he described me to his friends. I knew that every grandchild was reduced to a singular trait: my brother the veterinarian, my cousin the softball player. However, I hadn't known mine until I introduced myself to one of my grandfather's friends. I said that I was Mara, Chuck's granddaughter. Recognition flashed in his eyes, and he muttered, “Oh, right. You're the one with the problems.” Woah. I have had people say bizarre things about my illness, but this one took the cake.

As strange as it sounds, I found it hysterical. I laughed and shook his extended hand and confirmed that, “Yessir, that's me!” I eagerly told my family about the encounter and it will forever live on as our favorite joke. The moral to the story is that choosing to laugh can be the best coping mechanism.

Of course, that's not to say that feeling awkward about your CF isn't normal. Don't feel pressure to normalize your disease right away, and don't be ashamed that you feel embarrassed by it. Some circular wisdom: Don't feel insecure about your insecurity, it will only make you more insecure. Let yourself feel awkward while you come to terms with your CF. Just know that like any other coming of age story, you will get more comfortable with yourself as you go.

I used to feel like everyone noticed when I was coughing or having stomach pains, or even when I was hitting a rough patch and just looked like hell. The truth though is that most of that was in my head. And for the times when it wasn't -- when someone decided to say something rude -- I learned to be amused, in the same way you are when a kid says something impolite. Even though you're “the one with the problems,” some people are severely lacking in empathy which is much worse. In the cases of both the child and the rude person, you simply understand more than they do.

I have found that for every rude person, there are two friends who stand in my corner. I'm extremely lucky to have a group of loyal, understanding people in my life who don't judge me by my disease. What's more, they appreciate my ability to take it on with a sense of humor. For people with CF, finding out who our friends are is one of the hardest struggles.

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It's also the most rewarding.

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Mara-Cray

Mara has been living with CF for 24 years. She recently earned her master's degree in public relations and hopes to continue her work in health communications. In her spare time, she loves reading, baking, and spoiling her dog, Zoe.

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